tag:blogger.com,1999:blog-26469811573672726562024-02-19T00:01:44.828-07:00Amanda and the HendersonsAmandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.comBlogger253125tag:blogger.com,1999:blog-2646981157367272656.post-42017186920246932372021-06-16T23:42:00.002-06:002021-06-16T23:42:37.460-06:00Whats mine...<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiElGLWuLW0_1M4hLSalZXZgECj8b6nc4B3SCeZ6AXcBihXh5NOsadAREyPrsPq-NeYdMZrDinZWSQmr6IAaXa9f9_velO8O-c1js76-Gr9mJx5m-GkUmClAEi62Ol7qPoWchRr9HeRe5FI/s2048/64550340390__46B3E820-E5D6-4DFB-8CAF-DDE4A12D97FD.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiElGLWuLW0_1M4hLSalZXZgECj8b6nc4B3SCeZ6AXcBihXh5NOsadAREyPrsPq-NeYdMZrDinZWSQmr6IAaXa9f9_velO8O-c1js76-Gr9mJx5m-GkUmClAEi62Ol7qPoWchRr9HeRe5FI/w640-h480/64550340390__46B3E820-E5D6-4DFB-8CAF-DDE4A12D97FD.jpeg" width="640" /></a></div><br /> Writing is what I should've been doing every day for the last year and a half. <p></p><p>Writing is my escape...</p><p>my joy..</p><p>my pleasure.</p><p><span style="font-size: medium;">But.</span></p><p>It has been tainted.</p><p>Turned around and become a fuel for my anxiety. What if? What if my words are misunderstood....what if people are offended by my thoughts, what if they think Im saying something I am not.....<span style="font-size: x-large;">Again.</span></p><p><span style="font-size: x-large;">What if....</span></p><p>There have been depths of pain the past few months that I have never known. And <u>MY GOD</u>....thats saying something.</p><p>and speaking of God.....</p><p>I dont feel much like talking to Him lately. I <i>try</i> to. <span style="font-size: large;">BUT</span> tears fill the spaces where the words should be. Nothing to say, but a billion <span style="font-size: medium;"><i>WHY'S....</i></span></p><p><span style="font-size: medium;">So tonight....I write for me. </span></p><p><span style="font-size: medium;">I write....and I trust that these words are enough..LOUD </span>enough for God to hear....and raw enough for them to count...as the prayer I cannot muster.</p><p><br /></p><p>So many stories of heartache and pain have been woven into the days, hours.... minutes....seconds of the passing months. Stories....that most of which, are not mine to tell.</p><p>The vulnerability...</p><p>The pain...of those that I love....hurts me to my very core...but the details....they'll remain unspoken for now.</p><p>The story that <i><span style="font-size: x-large;">is</span></i> mine to tell...</p><p>one of the many..</p><p>Nights without sleep, for almost all of the last 12 months. </p><p>Days with crippling anxiety...panic attacks, nervousness...fear.</p><p>After suffering for what I deemed <i>long enough</i>...I decided to take all of that energy and put it somewhere new.</p><p>I started to train. developed a plan to put my worries into motion.... It started slow...with Devan and a couple of friends.. I began with a walk for a couple of days...then a walk/jog....and finally a run each day. My body felt useful...beyond being a home for nerves and pain....it was capable...of so much more. It was taking me places...it was mastering strides and breathing...enjoying recovery and growth.</p><p>I was running at least 2 miles a day...every day. I had never felt so good.</p><p>One evening while I was running along the riverside, I felt a sharp pain. Each step on my left foot sent shockwaves throughout my entire body...what was it? I wasn't sure. It came from nowhere...the onset unpredicted. I pushed through that run....and again for two more days....it must be a pulled muscle, I thought...."don't be a wuss...." By the third day of that week I could barley walk a couple of feet, my knee was swollen and I knew that something was wrong....I headed to the walk in clinic where I was told I had pulled a ligament...a week later, I was no better....</p><p>I saw a different doctor..He thought it was most likely my meniscus...surgery would probably help.</p><p> It took an entire month before an MRI revealed that I had broken my leg. My tibia... Not with a fall or a trip...but only a step. I had walked around....wrangled kids....done all the mother and wife things for a MONTH on a rather severely broken leg... after the MRI I was forced to <i>rest</i> for a month and a half....no weight baring...no walking...crutches. </p><p>Im not good at resting... It took another few weeks before it was revealed that my bones were deteriorating...who knows how long it will take before they figure out why... Appointments with specialists are in the works... </p><p>Im still stuck...finally off of crutches, but still in a full brace...unable to do much... no hiking or swimming....no running. Physical Therapy...is the most I do.</p><p>Its been so hard.</p><p>With all of the heartache that has been filling our world.... and experiencing most of it from the couch...</p><p>The physical pain,</p><p>The emotional pain..</p><p>The spiritual pain...</p><p>Its all so heavy.</p><p>It has led me to a place of silence....</p><p>fear of sharing my thoughts, my feelings...my pain.</p><p>Silence in my prayers....</p><p>I cannot pray.</p><p>I have never questioned my faith...for my entire adult life I have known the power of Jesus...</p><p>I know it still.</p><p>I have never felt far from him.</p><p>and I still feel Him near.</p><p>In fact... Jesus sits next to me.</p><p>I feel him here....His hand outstretched toward mine... his arms ready to catch me....</p><p>but my eyes do not meet His.</p><p>I do not look up.</p><p>We sit silently.....together.</p><p>He knows that I know He is here...I can feel Him and he knows it.</p><p>But I say nothing.</p><p>I can't.</p><p>This is what's mine....</p><p>This moment.</p><p>I have nothing to prove...Jesus knows it all.</p><p>So I sit here with my lips closed and my heart open.....Pouring out the pain through my fingertips as I type. The frustration of my physical limitations... the desperation of all that has happened before this moment... The realization that no amount of hospital stays could hold a candle to the difficulties of the last year...I type. </p><p>quietly....</p><p>Thank God...for all that <span style="font-size: x-large;">is</span>... without a bit of my effort... </p><p>I will write... if for no one but me....</p><p>Because this moment...is what's mine.</p>Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-90690452536162342532020-12-02T21:20:00.002-07:002020-12-02T21:30:03.201-07:00I stood.<p> "I stood up in the shower today."</p><p>That sentence might seem like too much information, or weird...strange even..</p><p>I get that. </p><p>But I said that sentence out loud to myself over 50 times on Friday. </p><p>"I stood up."</p><p>"I stood up."</p><p>"I STOOD."</p><p><br /></p><p>You see, its been many many months since that seemingly small occurrence has happened....</p><p>January. </p><p>Thats the last time.</p><p>Over 11 months ago.</p><p>Every time I have showered since then, I have done anything but stand.</p><p>I have slipped into the water and fallen to my knees...</p><p>or climbed in from the bathroom floor to the shower floor. </p><p>I have laid down like a small child.</p><p>I have sat there.</p><p>Water pouring over my whole self and falling to the tub floor, mixing there with my tears. </p><p>I have sat....silently crying...shaking.</p><p>Other days unable to stop the sound...</p><p>Crying loudly and praying that the dropping of the water around me would soften the noise.</p><p>I have been so so low.</p><p>I have prayed...</p><p>I have tried to hold myself together all day in front of my family, only to fall apart the moment that bathroom door closed....</p><p>I remember one day in particular, I sat there for far too long, the water had turned cold...my skin was purple with chill and at the end of each of the thousands of goosebumps my hair stood on end. But I could not move. I had neither the strength nor the desire to stand. I reached my foot out to turn off the tap and sat there frozen...still...sobbing...and cold. I could hear the kids running back and forth throughout the house and I knew that there would be countless messes and chaos when the door finally opened. So I just sat. Once I finally caught my breath and slowed the tears, I grabbed the towel and threw myself out of the tub. Slowly I pulled myself to my feet. I wiped my face....and I opened the door. Three of the four kids were waiting for me there...their faces relieved at the sight of mine.. Their smiles reaching deep within me...my lips curled upward and I finished out my day... Only to repeat the cycle the next.</p><p>The kids cant go to school...they're all home.</p><p>24 hours a day.....we are together..</p><p>Things are hard for them right now, just as they are for me...and most everyone.</p><p>They're faced with the stress of these uncertain times, paired with the underlying fear of their brother's wellbeing... They hold a lot of responsibility in their tiny hands...trying to keep up with their own studies...missing school....missing friends...knowing that Parklen's safety is important...but mourning what they've lost... I see it each time I look at them...each time I send them off to meet with their teacher online...When they talk about their friends, or activities they miss...and I know that I have to keep it together....for them....until I close that door...and then it's just the same...</p><p>Every... time... </p><p>Its been just the same...</p><p>The same.</p><p>Until Friday.</p><p>Not much was different...but I was able to stand up. The water was hotter up there...the warmth was comforting. I barely noticed...until I stepped out and my feet firmly hit the floor. I looked at myself in the mirror.... No tears, no need to compose myself....it was just me, standing up and looking onward... </p><p>I dont know what was different...I haven't stood again since. But I have clung onto that day. A sign of hope. </p><p>I have been working through terrible things.</p><p>Mental struggles that are so heavy that my arms feel faint.</p><p>Its taken so much time, and guidance to put a name to my grief...to formulate a plan.</p><p>I spent many many years as an advocate...a fighter...a caregiver..a strong momma and wife... </p><p>I had to.</p><p>There wasn't another choice.</p><p>I had to put a pin in all of my pain....leave it there on the board...to be dealt with later.</p><p>I had to ignore emotions in order to deal with the hand that was dealt to me...</p><p>and now....</p><p>12 years later...</p><p>I grieve.</p><p>I cry for every time I couldn't.</p><p>For every night I slept next to a dying child...</p><p>For every morning I was awoken with the sounds of a hospital..</p><p>I cry for every life altering decision I was forced to make....</p><p>for the nights alone... </p><p>I cry for the meals I ate, secretly in a bathroom..</p><p>I cry for the oppurtunies we missed...</p><p>the memories we weren't allowed to make.</p><p>For the hurt.</p><p>For the pain...</p><p>I cry for the 24 year old that couldn't...</p><p>and for the 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, and 36 year old women too...</p><p>I cry for Parky...</p><p>For the life that has caused him so much pain...</p><p>I cry for Paysen.....</p><p>and Phinlynn...</p><p>and for Phisher.</p><p>I cry for moments that felt like hell...</p><p>the memories that wake me still.</p><p>I cry for the woman inside of me that always just wanted to fit in....and for the day she realized she never could...</p><p>I cry for distance between...for the weeks alone...</p><p>For the way life could have been...</p><p>For the way it turned out to be.</p><p>I cry because, in my broken state...God meets me there...</p><p>Undeserving, unworthy....messy, and sad... He sits with me.</p><p>He gathers each tear in His hands and I feel the weight lesson a bit each time he picks one up.</p><p>He tells me I'm safe...with Him.</p><p>I cry because of the times I had to be strong. </p><p>I cry because I feel misunderstood and unseen.</p><p>I cry because of loss...of hurt.</p><p>Most importantly...I cry because I have given myself space to feel the things I dont want to feel.</p><p>I have allowed the hurt of many years to begin to seep out of the cracks...I have decided to stop mending the rips, the places that are torn and the imperfections from over a decade of hurt...I have chosen to let it out....</p><p>It hurts....every day...</p><p><br /></p><p>Theres such an important part of being someone of faith... its the realization that life isn't "all or nothing"...its "yes and".. </p><p>Its believing in the power of faith...prayer...belief.. </p><p>and allowing my hurt to exist anyway.</p><p>Its not allowing the guilt of pain diminish what I believe.</p><p>Its holding tight to who holds the future...while I deal with the past.</p><p>Its believing fully that I dont have to fight for myself, my reputation, my worth..because He fights on my behalf. </p><p>Its believing that even the cries that make no sense result in a God that hears...</p><p><br /></p><p>I will hold on tight to the fact that one day, last week...I stood on both feet and didn't cry.</p><p>The light at the end of the tunnel...</p><p>the water in the middle of the desert...</p><p>the glimmer of hope in the midst fo the darkness...</p><p><br /></p><p>I will continue to allow the feelings that are uncomfortable find their place. Life is hard. It has been for so so long...</p><p>As the days keep passing in this strange year, I realize...it might just continue that way for a while...</p><p>I have been gifted time...extra time with my kids, extra time to make memories...extra time together... </p><p><br /></p><p><br /></p><p><br /></p>Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-81012072886809039742020-08-06T12:58:00.000-06:002020-08-06T15:09:25.883-06:00TraditionsTraditions.....<br />
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<br />
<br />
<br />
I am one who holds tight to traditions.<br />
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Like white knuckle tight.</div>
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I love them</div>
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I love the certainty and the assurance that comes from the known.</div>
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In the world I have lived in for many years, often the unknown drives the car.</div>
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So any little bits of known that I can hold onto, I do.</div>
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<br /></div>
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Many years ago, when Paysen was about 3 or so..we started a tradition.</div>
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He was old enough to realize when I was leaving with Parklen to the hospital,</div>
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and old enough to know that neither of us knew how long we'd be apart.</div>
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I have visions of his face as I would pull out of town,</div>
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fear,</div>
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sadness,</div>
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tears.</div>
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<br /></div>
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So one morning, whilst loading my suitcase into the car I had an idea.</div>
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I took out a black sharpie and I drew a small heart on his wrist and then placed a copy on mine.</div>
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I held it up and said, "Now when you look at this you will know I am looking at mine too...you can remember how much I love you and miss you. It can be a small way to keep us together while we're apart."</div>
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<br /></div>
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And so the tradition carried. Each trip....a heart.</div>
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As my son grew older, he wanted it to be a bit smaller....I assume so that no one would notice at school...but still a heart.</div>
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<br /></div>
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Yesterday, as I was loading the car, Paysen asked...."What about my heart mom?" He is 13...almost 14. It took my breath for a moment. As much as I still miss him, he misses me too. So the heart was drawn...We have also added in a red square for Phinlynn and I... </div>
<div>
I stare at them while I drive, while I walk, while I wait for doctors to come into the room. </div>
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That tradition is comfort for me.</div>
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<br /></div>
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Paysen and I have another tradition.</div>
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Every Christmas Devan takes the kids to pick out gifts for me.</div>
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He provides no restrictions...no guidance.</div>
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Just a "get what you think she will love" approach.</div>
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Most years, Paysen picks out a necklace. </div>
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Not just any necklace...but always a mythical creature.</div>
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Ive received a flying pig,</div>
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a unicorn,</div>
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a magical owl.</div>
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All adorned with jewels...and sparkle.</div>
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None of these necklaces possess any characteristics that would cause me to choose them for myself. </div>
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But.</div>
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For whatever reason, when Paysen looks at these sparkling pieces of magical animals...</div>
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he sees me.</div>
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<br /></div>
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So when I leave for Denver....or anywhere really.</div>
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Or If he leaves to go somewhere.</div>
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I make sure to wear one of the necklaces.</div>
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Not only does it make me think of my son,</div>
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it also makes me laugh, </div>
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each time I catch a view of it in the mirror, or when I reach down to feel it.</div>
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I laugh,</div>
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I smile...</div>
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<br /></div>
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I find comfort in these little gifts...</div>
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These little traditions.</div>
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Both of these small examples are reminders for me.</div>
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Reminders to be thankful.</div>
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Thankful for my children,</div>
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for their personalities....</div>
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for the way that they miss me...</div>
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the way that they see me.</div>
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Thankful that they're safe while I am away.</div>
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<br /></div>
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<br /></div>
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Do you have any traditions like this?</div>
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Any small things you do that others might not even notice? </div>
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<br /></div>
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As Parklen and I are waiting for the doctor today, I am finding myself exceedingly anxious.</div>
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So much always hinges on these checkups. Especially this one.... it has been months since we've seen his doctor (thanks Covid)</div>
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<br /></div>
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What does his blood say?</div>
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What does his school year look like?</div>
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Are his infusions working?</div>
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On and On the questions go...</div>
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<br /></div>
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I find the most grounding this I can do...<i>right now</i> is focus on what is.</div>
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I know for sure that I have a family that loves me.</div>
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I know for sure that Parklen is loved.</div>
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I know for sure that today Parklen feels good.</div>
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I know for sure that weather is nice and the sun is shining.</div>
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<br /></div>
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and most importantly...</div>
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I know for absolute sure, that the holder of all answers, loves Parklen.</div>
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I know for sure that Parklen's future isn't a mystery to God.</div>
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and that gives me comfort.</div>
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<br /></div>
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So while I wait for the answers here....I hold tight to this unicorn necklace....and my faith.</div>
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Knowing that no words can be spoken in this place, to shake what I know for certain.<br />
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Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-32705832348808311312020-03-19T11:59:00.002-06:002020-03-19T11:59:33.268-06:00Right now.I have spent some time in reflection over the last few months, deep deep reflection....wading the waters of feelings and resting on the shore of faith....<br />
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Recent happenings in our world have really thrown me to the waves of uncertainty...the salty waters of anxiety and the crashing waters of fear.....<br />
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I am sure I am not alone in this. I imagine many mommas out there struggling.<br />
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Talking with a "hospital friend," the other day, although a short conversation...brought me much comfort. She said it best, this is PTSD.....this is just like what we've lived. The current demands on our country, feel a lot like taking care of a sick kiddo.....hearing the news talk about social distancing takes me swiftly back to Parklen's sickest days....<br />
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Days when we didn't allow visitors into our home, Parklen's kindergarten teacher wore a mask and gloves and scrubbed things down before she could sit with him for his schooling.....<br />
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We had a station where we all cleaned up right inside the front door....clothes stripped down from our kiddo in school and hands cleaned and stuff wiped off before stepping further into our home.<br />
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We didn't visit community events, grocery stores, playgrounds, the library or any place with a crowd....for years.<br />
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We rarely made plans because of the fear that someone would overlook a symptom and Parklen would become ill...<br />
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I lived in a state of constant vigilance....always watching....always preparing....rarely relaxing.<br />
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For. Years.<br />
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Social distancing kept Parklen alive....although sometimes...barely.<br />
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Over the last few years I have relaxed a bit in all of these areas, allowing more exposure...inviting people into our home....letting Parklen and the rest of us attempt a more normal existence.... but the fear of returning here has always been present in my mind.<br />
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So when I hear, this is all new territory....it isn't for me. Or for moms like me... Moms that have had babies with cancer, babies going through transplant....babies with immune problems.... we've lived this. It is so hard to live this way....and its even harder to rely on other people to help keep your loved ones safe.... to trust that the person next to you in the store isn't sick....that the man in front of you in the post office isn't carrying a virus...the lady pumping gas beside you isn't either....<br />
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I have had to really dig deep and remember the ways that I handled this life before....because the truth is....it has been very hard. I was struggling before this whole pandemic came about...<br />
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Struggling to stay afloat...<br />
Struggling to feel content...<br />
Struggling to remain calm.<br />
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and then this came about....<br />
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A catalyst.<br />
A boost into further despair.<br />
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Which then, leads me to extreme guilt....<br />
How can I feel this anxious fear, when I have faith in God?<br />
How can my body feel like its going to quit, my heart feel like its literally breaking and my breathing feel hard to manage......When I believe that God is in control?<br />
I can think myself deep into the depths of guilt...<br />
It takes a deliberate self talk session to remind myself,<br />
I am human,<br />
I am vulnerable....<br />
I am a full lover of Jesus....in spite of my shortcomings.<br />
<br />
and He's still here...<br />
loving me through my fears...<br />
catching my tears...<br />
hearing my prayers...<br />
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Many times each day I have to look into the mirror and say,<br />
"Right now, you are ok."<br />
"Right now, your family is ok."<br />
"Right now, you can breathe....."<br />
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<br />
Many times a day I have to go to a quiet place and cry my eyes out....<br />
because I cannot hold in the tears....<br />
It hurts too bad.<br />
<br />
I cry.<br />
And then I thank Jesus for being with me there...in my despair...<br />
I thank him for holding my tears and hearing my fears.<br />
<br />
And then I stand up and do what I can do....<br />
<br />
Our entire family is on high alert....because we all, in some way...remember. The memories force us to pay attention...to do more than asked to keep our precious Parklen safe....<br />
<br />
And our memories also remind us that the only things that truly matter, are already inside of these walls. Our family.<br />
Each other.<br />
The love and faith that we share.<br />
<br />
What an amazing opportunity we have right now in the world...to slow down.<br />
To focus on those we love,<br />
the learn more about each other.<br />
To just <i>be</i>.<br />
<br />
On a walk yesterday, I was watching the kids run before me....and it hit me, there are no restraints on this time right now. We are allowed to just be...and allow our time to be full, without worry about what's next.<br />
<br />
We have a loose schedule posted for direction if the kids are feeling lost....we have animals that still depend on us to care for them....but beyond that, it really is just us....together.<br />
<br />
This is the thought that helped me back to sleep when I awoke each time over night....<br />
"Here we are....together...."<br />
<br />
I am praying blessings on all of those I love. That you can find the flowers in the weeds and the sunshine through the clouds. That you can teach your kids much about how valuable they are...and together you can deepen your love....<br />
<br />
What we have is what we have...and where we are is where we are.... If I don't let my mind go anywhere but there...I can keep my head up...it lightens the load.... because <i>right now</i>....I am ok...we are ok...right now.<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-18754472139565841662020-01-04T15:31:00.001-07:002020-01-04T15:31:27.597-07:00Belong<br />
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<br />
<br />
<br />
<br />
Ive been replaying this past year in my mind.<br />
Like a reel of an old movie, the pictures quickly passing by.<br />
It's a mostly bad movie.<br />
Critics would give it at least one thumb down.<br />
Its certainly not going to win any awards...<br />
<br />
I have been trying to figure out what, or why...the year was so hard....<br />
and its come down to this...<br />
<br />
Belonging.<br />
<br />
I thought I did....or was trying so hard to...<br />
but I don't.<br />
<br />
I do not belong...<br />
in a specific group,<br />
in a specific place..<br />
here, or there...<br />
I just don't.<br />
<br />
This realization has left a bitter taste in my mouth and an ache deep in my gut.<br />
But its truth.<br />
<br />
If you dissect that word <i>belong</i>... you can clearly see the word <i>long... </i>Belonging...longing.<br />
I want to...belong.<br />
I crave that inclusion...<br />
but reality is often different than our desires.<br />
<br />
On a girls trip this fall there was a discussion about the first time I left my kids for a weekend away.. it was almost 2 years ago, and they were losing their minds. They cried in the front lawn, each of them... they put their hands out as we drove off and tears streamed down their cheeks....ages 11, 9, 4 and an infant. They didn't want their mom to leave... and it showed. Upon remembering that day during the conversation in that car, there were laughs and then words,<br />
"it was<i> </i>so <i>weird</i>...it wasn't <i>normal, </i>Amanda." <br />
Harmless words, right? Maybe they should've been....they were spoken by a women who I believe cares very deeply for me...they weren't intended to hurt me... but those words <i>weird, </i>and <i>normal</i> were like serrated knives..pushed deep into my heart. They did hurt, and I tried so hard to understand why...and it hit me, I am different.<br />
<br />
My kids are different...our life....is different. Those words have marinated on my mind for the last few months....is different bad? <br />
No.<br />
Different is not bad...its just not the same.<br />
<br />
We are different.<br />
My kids have lived a hard hard life....every one of them...not just Parklen.<br />
They have watched their mother drive away toward Denver too many times to count....and for Paysen and Phinlynn....they never knew how long I would be gone...when they would see their mother again. They have dealt with the pain of being separated from me for days at a time...months for Paysen...<br />
They have associated the fear of their brothers health with me driving away.<br />
They have learned to hold their breath as I have driven out of town....<br />
<br />
It's not weird.<br />
and sure...it may not be normal....for the masses...<br />
but being upset about their mom leaving...is normal for them. It couldn't be anything but...<br />
<br />
This is just one instance.<br />
There have been so many this year...<br />
and honestly...it hurts.<br />
It hurts to put a bandaid over a gaping wound that's over a decade in the making...<br />
The blood seeps out...no matter how many times I replace the bandage...its not a wound that can be masked...or covered...or forgotten.<br />
<br />
Living in Denver was hard....but being surrounded by parents that were struggling like me...felt easier. We were all fighting deep battles...not just what to make for dinner or what everyone will wear...<br />
<br />
I have seen things.<br />
Hard<br />
<span style="font-size: large;">Hard</span><br />
<span style="font-size: x-large;">Hard</span><br />
things.<br />
<br />
Over and over again.<br />
<br />
and I cannot forget those things.<br />
<br />
They were devastating.<br />
<br />
They changed how I see things...<br />
They changed how I parent...<br />
they changed how I look at pain...<br />
how I look at tears.<br />
They changed my perspective..<br />
They changed my priorities..<br />
and they changed me...<br />
<br />
The lens of my past does not allow me to see things like the people around me see them...<br />
and although I have tried so hard over the last few years...I can't anymore.<br />
Trying to fit in...is what has stolen my joy.<br />
<br />
I<br />
Am<br />
Different...<br />
<br />
and being different has shown that maybe..I just don't belong..<br />
and that's OK too.<br />
<br />
There are friends in my life that I love very much...<br />
and I know they love me...<br />
but I think I have worked very hard to be someone they <i>could</i> love...<br />
I have been afraid at times to be, or say, or do...what is me...<br />
<br />
I have gotten lax on my protection of Parklen's health...allowing the constant banter of how overprotective I am from those around me...occasionally win the fight...<br />
I have laughed along as the jokes came....allowing more sickness and germs to cross the threshold of our home..<br />
<br />
I have gotten lax on my relationship with Jesus....replacing His thoughts and time with him with other things...<br />
I have let the feelings of wanting to be included...rule my life.<br />
I have replaced my dependence on faith with the hope that I could be <i>normal...</i><br />
and I just cannot be...<br />
<br />
The year 2019 was hard...for so many reasons...There has been hardships in my family, and marriage..financial struggles...a move, rebuilding....growing...layers of hurt and billions of tears...<br />
<br />
I was thinking late last night about this past year....<br />
It really has been a doozy.<br />
Recovering from a surgery...physically and emotionally... losing relationships...changing relationships...loss of trust...miles of pain...<br />
I was remembering difficult years Ive had in the past, some because of Parklen's medical struggles, some because of financial struggles or marriage issues...<br />
<br />
Ive had years with little sleep and daily stress...<br />
I have had years with fear and helplessness...<br />
This year had all of those...combined.<br />
<br />
It was not my favorite year...<br />
It was hard...<br />
Lets be real...<br />
I hated 2019.<br />
There I said it.<br />
<br />
The guilt that comes from hating an entire year is heavy...<br />
I mean...there were plenty of small beautiful moments woven into the hurt...<br />
moments that helped me get through. So maybe it was more like an 80/20 situation....<br />
well, 90/10<br />
<br />
It was said to me a few weeks ago...<br />
"The trauma you have seen, and make no mistake...it was trauma...it has changed you to your core....you cannot undo that..."<br />
A million days on earth would never be enough to erase the days I spent fighting with Parklen....A million years wouldn't either....Because each second you watch your baby struggle the way I watched Parklen....is permanent in your mind. It cannot be erased....ever. It rewrites everything... Those moments...are written in black sharpie...permanent in my brain, on my heart...<br />
<br />
I am different.<br />
We are different.<br />
<br />
I know that its been six years since Parklen's transplant...and maybe its old news....<br />
but to me, it feels like yesterday...<br />
The nightmares that wake me, that steal my breath...<br />
the sweat soaked sheets...<br />
the panic attacks and the tears...<br />
They are the same today as they were then.<br />
No better...<br />
No different.<br />
<br />
Its no ones fault but my own....trying to pretend... working so hard to move forward...putting on the bandaid... I did that. and I'm ripping that sucker off....<br />
I'm not going to try to pretend anymore.<br />
Pretend that I understand everyone else...<br />
pretend that things that hurt me are weird...<br />
pretend that things that hurt my babies are weird...<br />
Pretend that I'm normal...<br />
<br />
Thank God for clarity and grace...<br />
Thank God for His love...that is <i>enough</i>....<br />
Thank God for reminding me that only He can fill my voids...<br />
and Thank God for 2020....The year of <i><span style="font-size: large;">not belonging</span></i>Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-39559909606740894762019-10-24T21:52:00.001-06:002019-10-24T21:52:07.519-06:00Whats lostWe spend so much of our lives trying to find something...<br />
<br />
<i>Small</i> things....<br />
<br />
Our keys,<br />
A missing shoe...<br />
The right turn,<br />
The remote control.....<br />
<br />
<i>Bigger </i>Things...<br />
<br />
Our purpose...<br />
Our spouse...<br />
Our faith...<br />
<br />
All of these are things I have searched for....some, many times...<br />
<br />
There are feelings that come with searching...<br />
Excitement,<br />
fear,<br />
frustration....<br />
Sometimes desperation....<br />
<br />
And when we find the thing....we often find relief....a sense of peace..<br />
<br />
Its hard when we lose something...am I right?!?!<br />
We've all been there?<br />
As mothers, especially....Because we aren't only in charge of the things we've lost...but a whole family worth of things fall into our responsibility....<br />
When you have multiple kids you have multiple chances to look for things...<br />
<br />
One kiddo can't find their shoe, its time to leave for school...there is running and screaming and searching and often tears..You juggle the search with trying to keep everyone else from losing something...getting the baby into his seat, the snacks into the backpack...the homework in the folder....and after looking under the couch for the 6th time...VICTORY...<br />
But even though that shoe was found...the experience of that loss has set a tone for our day... We're beginning our moments outside the house flustered...frustrated...and often late.<br />
<br />
Hardship and heartache have both followed me throughout adulthood...<br />
Big things, small things...daily struggles...life changing events...but as hard as it all has been...Ive carried something with me that never faltered...<br />
<br />
Joy.<br />
<br />
Ive always had it.<br />
In my back pocket per say....at my fingertips...in my hand...<br />
As hard as things got...the joy was there.<br />
<br />
Recently...I seem to have lost much of that one special thing that has gotten me through so many things.<br />
<br />
Ive lost a great deal of joy.<br />
<br />
Its hard to say when it happened exactly...I can't even comprehend it if I try.<br />
<br />
Maybe it was the struggle of a colicky baby....<br />
Maybe the move...<br />
Maybe the big surgery I had last year...<br />
Or the poor health leading up to that...<br />
Maybe the financial worries...<br />
Maybe its the pressure to do everything that Ive always been able to... <br />
Maybe its the uncertainty that comes with following big dreams...<br />
Maybe it was when things slowed down a bit with Parky and I wasn't under constant pressure to keep him alive...When you're under that constant stress...its life or death...you don't have time to dwell...you just <i>do </i>what you have to do...<br />
Maybe its an influx of insecurity in myself...<br />
<br />
<br />
All I know, is that lately I have found it harder and harder to find it...I keep looking under the couch...but only find crumbs.<br />
<br />
The good thing about the joy I had is that it's rooted in faith.<br />
So its not gone...I know it's still there.<br />
I know that Jesus is right here beside me on the couch as I type these words..He's encouraging me to do so...<br />
Because its a dark place to be...<br />
When we are so obviously human...in our pain and our struggle...<br />
Its dark here...<br />
When we have faith and the pressure to always be OK is out there for the world to see.<br />
When we are suppose to <i>be</i> the light...its hard to feel as though we've been dimmed a bit.<br />
It feels like a failure to struggle so hard....<br />
But it's real.<br />
It's life.<br />
The hardness of it...the rawness of it...the darkness and the ugliness of losing something so important... It's real...<br />
<br />
My kids can tell I'm struggling...no matter how hard I try a keep my mask in place...My marriage is suffering because of my darkness...our family...we're all just running around trying to keep the morning going..the other things that have to happen in life...while mom is looking for that lost shoe.<br />
<br />
Its so hard for me to type these words...<br />
I believe so very deeply in the love of Christ.<br />
I believe in His love for me...<br />
I believe that my pain can be healed by the fact that He loves me...<br />
and I also believe when the bible tells me that He holds every tear Ive cried...and that he never sleeps...<br />
Jesus is with me in the middle of the night when my tears soak my pillow and my breath is hard to catch. Jesus is with me when I force a smile as I'm walking into a meeting or picking up the kids... He's right here..<br />
He's holding my tears and braving the nights <i>with </i>me.<br />
<br />
Please be encouraged...if you're hurting.<br />
If you can't find your joy...<br />
If you feel like a phony or a fake...<br />
If you want to cry out...<br />
<br />
Jesus is there.<br />
<br />
Each day I pray...which had been so hard for me to do for a while...I pray and I watch as my prayers are answered...sometimes in small ways...<br />
But every day I see another crumb under that couch...and I am sweeping together the pile...its growing...the joy is growing...and with a faith that hasn't wavered...I believe that my full joy will be restored. I believe that the truth that I know is carrying me back to where I need to be...<br />
<br />
Because....<br />
<br />
Jesus is here.<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-66608798693574907902019-07-18T22:16:00.000-06:002019-07-18T22:26:51.967-06:00its like that...<br />
<br />
<br />
<br />
Do you remember being a kid and learning to swim? <br />
<br />
I was thinking recently about how hard this test was for me....Swimming did not come natural...at all.<br />
I remember being in my swim classes and watching as the kids around me were confident and ready....easy to teach and fast to learn... I watched as they laughed...and splashed....and <i>swam</i>...<br />
<br />
All the while, I clinched my white knuckles around the side of the pool...afraid to loosen my grip. When I would finally release my grasp, one finger at a time... I would struggle...in every way. It was terrifying.<br />
I can see my scrawny arms and legs kicking frantically and flailing about, the ebb and flow of the water coming and going toward my face.....the heavy feeling of impending doom...I just could not get it. <br />
<br />
I failed plenty of classes....and yet my mom continued to sign me up...hoping eventually I would get it.<br />
<br />
The knot that forms when you fear you will drown is unmistakable. It's a feeling all its own. To look at everyone around you, and feel as though you are not seen....don't they notice? The fun that's being had, the life that's being lived....its hard to feel like you just can't swim...<br />
<br />
I have felt like this so much lately.<br />
Alone.<br />
Struggling.<br />
Drowning.<br />
<br />
Its hard to pinpoint the wave that did me in....<br />
health,<br />
spirit,<br />
relationships....<br />
I don't know...honestly.<br />
<br />
I have spent the last few years struggling with my own health...which isn't an easy thing for me.<br />
I am used to...and good at...worrying about and advocating for my kids....Parklen especially. It comes natural for me....makes me feel as though I have a purpose... but worrying about myself comes last. Always.<br />
<br />
The physical and emotional pain I have had this last year in particular have completely changed me. In ways I cannot describe well.<br />
<br />
The change that has happened with Parklen has been different as well. His checkups aren't the same...there isn't panic or urgency that happens there.... There is just a weird sense of treading water. <br />
He is not as sick as he once was....nor is he whole.<br />
He has his struggles still....physical and emotional...and the growing and seemingly flourishing body that carries him makes it hard to know this.<br />
<br />
We wait.<br />
<br />
I find it so hard to celebrate in the waiting as of late. <br />
I can't let down my guard.<br />
Breathe.<br />
<br />
I did that before....and the pain was much more difficult when the frantic life returned...<br />
<br />
So I pretend to breathe.<br />
Let him live...<br />
<i>almost</i> let go of my worries...<br />
but inside I hold on to that breath...never fully releasing it from my lungs...knowing that at any moment that other shoe could drop. I take the brunt...let Parklen believe that things are fine...I don't want him to live in fear.... and for now, things <i>are</i> fine.... <br />
<br />
Parklen had a great school year... wonderful teachers that loved him and cared for him.<br />
I took a back seat.<br />
It was something I needed to do.....for him.<br />
<br />
During prayer one night last summer, I had a thought..."Do you want Parklen to live <i style="font-size: x-large;">longer </i>or <i style="font-size: x-large;">better? </i>and it really seemed like an obvious question....of course, I could protect him and keep him healthy...guard him and keep him home.... but is that any way to live? What would his years mean? So I decided I had to just let go of him a little bit more than I ever wanted to...<br />
He missed a lot of school....but he went a lot too. And he learned, and he grew...<br />
<br />
I was sitting in the hospital last week for a checkup with Parky....all of a sudden the walls seemed to be closing in...my chest felt heavy...the air hard to find. There wasn't any urgency or panic in the appointment itself....just routine... But the memories flooded in and that's all it took. <br />
Spending time with a family that we met during Parklen's transplant....that is now navigating the waters of their son's most recent relapse...remembering the struggle they had then, and seeing it fresh...<br />
<br />
I cried more last week than maybe the 50 before that..combined.....and Ive cried twice that this week.<br />
<br />
As a kid...my mom persisted...she drove me to lessons summer after summer...paying the money...sitting in the bleachers...until one day..... I swam.... Years later I would join the swim team...and even work as a life guard...swimming became something I loved....something I could do... but those years of struggle still remain fresh in my mind.<br />
<br />
While I struggle today...looking around at everyone....living...smiling...laughing....I know that one day....I will swim again. This struggle cannot last.... for I know the creator of the very water in which I live....The creator of heaven and earth...holds me, sees me....and most importantly...loves me... that has to be enough.. When I feel like the waves in my mind aren't understood by those that love me...or the struggle with my body has to take a back seat to the every day...I have to trust that when no one else can see....He does...it has to be enough... it <i>is </i>enough.<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-20301160013913189182018-10-29T20:36:00.005-06:002018-10-29T21:37:18.604-06:005 Years5 years.<br />
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<br />
I just cannot believe that it's true. It doesn't seem possible.<br />
5 years is such a long time...Its almost as though a few lifetimes have passed since that day.<br />
Can you remember what you were doing 5 years ago?<br />
I remember each moment....like they were yesterday.<br />
The day that Parklen received Paysen's life saving gift of marrow.<br />
<br />
Parklen has now lived as long <i>after</i> as he did <i>before</i>.<br />
Day <a href="https://amandaandthehendersons.blogspot.com/2013/10/zero.html" target="_blank">zero</a> is the center point of his existence thus far.<br />
The thing that all of his pain led him to....<br />
and the moment that has made every moment since possible.<br />
<br />
Life today isn't what I thought it might be back then.<br />
As we trudged forward toward the transplant....believing in faith that Parklen would make it to the other side.....<br />
No, life isn't exactly how I had imagined.....<br />
But the heartache that would have been without that day....cannot be measured.<br />
<br />
You kind of paint an unattainable image of how the years to come will look.<br />
When you’re faced with such an important decision.<br />
Perfection,<br />
ease.....<br />
simplicity....<br />
<br />
I can remember Parklen's doctor...who has known him nearly all his life, saying, "A few years from now, you're going to be at home and worrying about things other people worry about, Amanda"<br />
<br />
He was right.<br />
I hate that part.<br />
<br />
I hate the moments when I forget where we've been for even a minute.<br />
When I treat my worries today as though they have any weight compared to what we have carried.<br />
The mundane....<br />
The normal....<br />
I beg the Lord to keep my memories fresh....<br />
My appreciation in the front of my mind.<br />
<br />
Remembering that every day stress is what is being prayed for by someone standing where I used to be.....that's a gift I have to give myself.<br />
Remembering.<br />
<br />
Parklen was home from school today...not feeling his best...and needing to rest.<br />
Having him here helped me with my remembering.<br />
<br />
It's strange how difficult an anniversary can be. The emotions...the fullness of every moment that was that day. I snuggled that 10 year old boy today and just breathed in his very existence....he's still here.<br />
How blessed am I that that is the truth.<br />
<br />
5 years have changed our lives in many ways.....the biggest is that we fight differently for Parklen.<br />
Fight for him to live at his fullest...rather than just fighting for him to live.<br />
<br />
I don't miss the days of laying awake and praying for his next breath to arrive...<br />
I don't miss the days of crying out to God and begging for a miracle...<br />
The days of watching him drag an oxygen tube around the house or wheel his iv pole holding the only source of nutrition that he could keep down through our home....I don't miss those.<br />
Or the panic in his eyes every day.<br />
The vomit every couple of hours, the need to be carried to the bathroom more than that.<br />
I don't miss his knobby knees that buckled when he tried to stand....<br />
the 20 pills he took multiple times a day...<br />
The drawing his blood at the kitchen table,<br />
the changing of his feeding tube....<br />
I don't miss any of that.<br />
<br />
But God am I ever thankful for it all.<br />
<br />
Today I sat in the weight of where we have been. Where we have traveled.<br />
Parklen and I read things from that day and watched videos and talked about things he didn't remember.<br />
<br />
I am celebrating the gift of the last five years....I don't dare to imagine what life without Parklen would have been like.....there isn't a need to go there.<br />
Because he is here.<br />
<br />
Isn't it strange how quickly time passes and slowly all at once.<br />
What is it that they say?<br />
The days are long, the years are short....<br />
Truth.<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-58886451401315290102018-08-22T22:48:00.001-06:002018-08-22T22:48:14.732-06:00A season....Life is full of seasons...<br />
Winter, spring, summer and fall...<br />
Childhood, teenage years and adulthood...<br />
and about a million others lived within those all....<br />
<br />
I am in a season.<br />
A season that has placed me where I would rather not be.<br />
<br />
With the gift of four children, I expected some chaos...some exhaustion...<br />
I never imagined what my life has become.<br />
<br />
<br />
Exhausted.<br />
Tired.<br />
Insecure.<br />
Disorganized.<br />
<br />
I can honestly say that most moments that have happened since our latest sweetie was born, I remember close to none of them.<br />
<br />
Our baby cried. And not like a baby cries....but cried constantly. For at least 20 hours a day.....he cried. Being the mother of Parklen, I was worried. I thought for sure he was sick or something terrible was happening.... The doctor assured me.... colic.<br />
<br />
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He had colic.<br />
I don't know what you know about colic...but it was designed by the devil...to attack a mother and family while they are vulnerable... expecting the sweet sensation of a newborn baby...and instead punching them square in the nose with a heaping helping of screaming insanity. It. Is. Tough. A beautiful baby in your arms..beautiful....but the pained cries don't stop. His crying spilled over onto everyone in our house. The kids, Devan....and me. We all walked on eggshells each day just praying that it would be the last day of screaming.....<br />
<br />
On the day that marked 7 months and 1 day...our beautiful baby boy woke up and smiled... and that was the end of that.<br />
<br />
In the midst of the months of screaming...I somewhat lost my mind. I slept just over 1 hour a night...and almost zero hours during the day. I began to sink under the weight of depression. The exhaustion...the pain of a terrible birth, the feelings of failure because I could not make my baby happy. It wasn't the food, or the temperature, or clothes or the position that we held him...it was nothing that we could do...we tried everything.<br />
<br />
The wives tales..<br />
The doctors advice...<br />
Over the counter solutions..<br />
Natural ones...<br />
<br />
The inability to calm a baby..<i>your</i> baby....or soothe their tired cries...<br />
The feeling of complete and utter helplessness is not one that I am unacquainted with...Parklen has given me plenty of practice with that. But, somehow....I lost control of all things. Physical, mental...emotional...<br />
<br />
The postpartum depression began to sink its claws in deeper...<br />
causing feelings so terrible and helpless...<br />
<br />
The added pressures of being Parklen's mom,<br />
and Paysen's mom,<br />
and Phinlynn's...<br />
<br />
The extra daily things.<br />
The end of elementary school for one,<br />
the beginning for another..<br />
The Denver trips and failed surgeries...<br />
<br />
The constant worries for Parklen's future and his health...<br />
<br />
The nursing difficulties.<br />
<br />
The realization that I couldn't be much to anyone in my state....<br />
not a friend, or companion in any way...<br />
<br />
The everything.<br />
<br />
<br />
One day when my baby looked up at me and smiled, I realized how hard it was to smile back. How difficult it was to gather myself in a way to exude the joy that he brought me. Because no amount of sleeplessness and stress could erase that joy....and yet, it was hard to show...and I realized that my circumstances had swallowed me whole....or maybe not whole...but bite by bite and bit by bit.<br />
<br />
I'm working daily, through prayer and through reading the word that I know is truth....<br />
and the comfort for me comes in the whispers that say, "this is only a season."<br />
<br />
A season marked with withering leaves...<br />
and bitter cold..<br />
<br />
A season that requires the extra heavy coat of faith and the insulated gloves of friendship.<br />
Heavy boots to step in the deep... And the scarf of protection from what others think...<br />
<br />
A season that I cannot travel alone...<br />
or dare to even try.<br />
<br />
Ive spent so many difficult days in the past decade hiding and living through my own troubles...putting up a wall that would keep people from me. Letting just a fraction of my pain show to the world...it was safer there.<br />
If I attempted to do that now, I would not survive.<br />
<br />
There isn't an ounce of exaggeration in my words.<br />
The past 9 months have been the toughest of my life.<br />
<br />
But on this day, I laid my baby to bed, and as I looked down at him I felt so thankful.<br />
Because I'm here...and alive....and despite all of my shortcomings...this baby boy would choose me over anyone. God has allowed him to see the parts of his mom..... that lately.....even I can't. He's allowed my baby to love me, even when I haven't loved myself.<br />
<br />
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<br />
The struggle isn't over...I'm wading through the muddy waters of my own health right now...and having to pay attention to me, isn't something I am good at. I can keep a kid alive...I can fight with doctors and nurses and pray for my babies until my knees are numb... But taking care of myself doesn't come as easy. The other day I was praying and the thought hit me in the face..<i>.how can I trust God unconditionally with the lives of my children....believing that He loves them and cares deeply for them...trusting that His hand is always upon them... But I don't believe the same for myself?</i><br />
<br />
Of course He does.<br />
Of course He does.<br />
<br />
Living in this world....where hardships are real...and often continuous....its evident to me, I could not go on without God. Without His continuous love, and grace....without the knowledge that no matter my failures...He loves me the same.<br />
<br />
In this frigid season...I am thankful for all that is keeping me warm....The coat...the gloves, the boots and scarf... each article playing its part to help me through...until the sun within me shines again...I know its near...the thaw.<br />
The defrosting of my heartache...<br />
until then,<br />
I rest in the comfort of my savior...<br />
and that's enough..<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-32914207311409631632018-02-08T16:20:00.002-07:002018-02-08T16:20:42.763-07:00D.A.YWow. Its been a minute....<br />
<br />
Today was a long day.<br />
All days recently are long days.<br />
<br />
On this particular day, Parklen and I find ourselves in the local hospital.<br />
He is getting his usual infusion in a very unusual way.<br />
<br />
Its been a Murphy's law type of day.. and that's all I am going to say.<br />
<br />
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But as things around us are going wrong, and the list of troubles pile up one by one...<br />
This boy remains the same.<br />
<br />
He is so sweet.<br />
So kind.<br />
and so full of God's love.<br />
<br />
<br />
Being with him today has reminded me of a lot of things.<br />
<br />
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<br />
Our past.<br />
<br />
The hard days,<br />
The good days.<br />
The scary days...<br />
The moments of fear, and joy.<br />
<br />
The hope we had,<br />
the hope we have...<br />
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<br />
<br />
Parklen reminded me today of the road we've traveled.<br />
<br />
and,<br />
<br />
Parklen reminded me today of just how far grace can go....<br />
<br />
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Kindness.<br />
Smiles.<br />
<br />
They can make all of the difference.<br />
<br />
When <i><b>things</b></i> are going wrong,<br />
you can choose to let your <i><b>attitude</b></i> go right...<br />
and THAT....can make all the difference.<br />
<br />
Because sometimes, having a chair in your favorite color and resting your head on a pillow with pictures of your favorite bug...are reasons enough to choose to have a good day.<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-50939963009683795272017-10-29T12:20:00.000-06:002017-10-29T12:20:58.077-06:00+1,460It has been 1,460 days since Parklen's transplant.<br />
Four YEARS.<br />
I lose my breath when I think about that.<br />
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It has been four years since my Parklen was dying....<br />
since we prayed that God would spare his life....<br />
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<br />
Four years.<br />
<br />
That day is fresh in my mind....and I believe that it always will be.<br />
I remember the sights,<br />
the smells,<br />
the sounds<br />
and the feelings as if they were happening today...right in front of me now....<br />
<br />
That <a href="https://amandaandthehendersons.blogspot.com/2013/10/zero.html" target="_blank">day</a> is burned into my memory.<br />
Always and forever.<br />
<br />
Where have we been in the four years since that day?<br />
We've traveled many mountain highs,<br />
and gotten reacquainted with the valleys.<br />
We've watched miracles happen,<br />
and hardship return.<br />
But through it all....<br />
We have remained safely in the hands of God.<br />
The creator,<br />
Our creator...<br />
He has held tightly to us as our life ship has sailed through the waves...and rested calmly on still seas.<br />
<br />
In four years we have watched Parklen change from a dying boy, to a survivor.<br />
We have watched as his story has changed the lives of many...<br />
his story that is far from completion.<br />
<br />
Parklen has a gift with words, and a gift with perspective.<br />
He is happy to be here.<br />
Happy with opportunities that come his way.<br />
He doesn't waste his energy...<br />
<br />
He is in school for a couple of hours a day...<br />
his class voted him onto the student council, which upon learning of this....brought tears to his little eyes.<br />
He played baseball this summer,<br />
He has friends and confidence....<br />
<br />
but...<br />
<br />
He still has hard days.<br />
Quite a few, really.<br />
<br />
He struggles to make it through just a couple hours of school....<br />
He falls asleep often on our drive home...<br />
He wakes up feeling tired and run down...<br />
He never wants to miss school, but has to often.<br />
His neck shows signs of lymph nodes that grow and shrink, (reminiscent of his disease)<br />
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He travels to Denver every 4 weeks for a check up and long infusion...<br />
He takes daily meds,<br />
He has bad dreams....<br />
He tries not to remember where he used to be.<br />
<br />
His fight is not over,<br />
our fight is not over.<br />
He has won many battles...but the war goes on.<br />
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<br />
Paysen has grown so much since the day he donated his marrow.<br />
He is no longer a small freckled face boy...<br />
He is taller and more mature....<br />
But when I look at him, I still see him that way.<br />
My little hero.<br />
My brave little boy who takes on the stress of the world....<br />
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<br />
He gets more now,<br />
understands more about his brother....<br />
He is starting to comprehend the weight of the gift he provided Parklen.<br />
He worries about him in different ways now...<br />
<br />
Devan is done with school and working in his chosen career.<br />
He has a normal schedule that includes dinner with us each night and breakfast in the mornings...<br />
He is no longer burdened with the stress of achieving a masters degree...<br />
He's made it.<br />
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<br />
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Phin is no longer the tiny baby that we all hold and pass around...<br />
She is a pixie still for sure...<br />
But she has grown into a little girl that is full of life...<br />
She still remains our shining light...<br />
I think she will always be that.<br />
She came when we needed her most and she continues to brighten all of our days.<br />
<br />
Our new baby...<br />
not yet born,<br />
but changing us already.<br />
We look forward to meeting him and kissing his face..<br />
introducing him to his super siblings...<br />
helping him to find his place in our incredible story....<br />
<br />
and me,<br />
I'm not the same woman that I was four years ago.<br />
I have grown more tired.....weary.<br />
I have changed for sure.<br />
Ive grown more lonely as the time has passed.<br />
Beaten by the waves of our surrounding seas...<br />
<br />
I have, however, remained the same in my faith.<br />
Believing that God is writing an incredible story for His glory...<br />
That me, that our family...that Parklen are playing an important part in that story.<br />
That all of the pain from days passed and the pain that continues today is for <i>something</i>.<br />
For <i>His</i> something.<br />
That no matter how bad I might hurt some days...<br />
no matter how hard things might be for Parklen now and then....<br />
The struggle is worth it.<br />
It has to be.<br />
<br />
<br />
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Four years.<br />
1,460 days.<br />
35,040 hours.<br />
2,102,400 minutes.<br />
<br />
A lifetime.<br />
A moment ago.<br />
<br />
Celebrating the victories that our family has lived.<br />
The miracles,<br />
the blessings.<br />
Being thankful for who Parklen is today...<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-22751714321161444232017-08-28T20:50:00.001-06:002017-08-28T20:50:39.604-06:00Thrown in...again.There are times when I am sure I have met my limit.<br />
Recently, I am having some of those times.<br />
It seems to be thing after thing and happening after happening....<br />
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<br />
Last week was super tough.<br />
Exhausting.<br />
And although I don't like to talk much about myself...here's what happened.<br />
<br />
I had 2 days that I spent in the hospital with a kidney infection...<br />
Turns out a kidney infection is a lingering nuisance when you're pregnant...<br />
Wait a minute, let me back that up a second.....have I EVEN told you guys that I am pregnant? Its shared on my personal Facebook, but I don't think I have actually written about it.<br />
Yup. Pregnant. Number 4. Almost to the third trimester.<br />
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<br />
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<br /></div>
<br />
<br />
That started my week.<br />
Then I went home from the hospital and packed to take Parklen to <i>his</i> hospital.<br />
The kids and I loaded up and headed to Denver.<br />
I started having continuous pain in my belly over our first night there and it escalated the next morning. By the time the kids and I had made it to check into Parklen's appointments the pain was worse. I ended up having to leave my children (all THREE of them) with my friends who work at Parklen's clinic. I always talk about my <i>friends</i> who I see in Denver....they are real. Parklen's care team and the people that we have known for the last 9 years....they care deeply for us and us for them. They didn't even blink as they said, "Go take care of yourself, we've got this." I didn't even worry about whether or not they would be ok.<br />
<br />
After being monitored and watched for 3 hours I was released with a diagnosis of false labor...caused by my kidney infection and get this.....stress... STRESS?!?! What?!?!<br />
<br />
I cried a lot by this point that day, but the tears had just begun.<br />
I was scared for my baby....scared for my family. Scared about being alone.<br />
As I walked out of the hospital and walked back into Children's I was exhausted.<br />
I made my way through the clinic and found my kiddos...well taken care of, fed, happy...<br />
I enjoyed a few minutes with them before Parklen's doctor appeared.<br />
<br />
"I think its time to try and send Parklen to school again."<br />
Words that I knew were coming. But words that stopped my heart for just a moment.<br />
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<tr><td class="tr-caption" style="text-align: center;">We HAD to treat ourselves to ice-cream after the day we had....</td></tr>
</tbody></table>
<br />
I was reminded of the last time I had this conversation.<br />
I wasn't ready then.<br />
I wrote about not being ready <a href="http://amandaandthehendersons.blogspot.com/2015/08/spinning.html" target="_blank">Here</a><br />
I cried about not being ready.<br />
<br />
I had a feeling that it wasn't the right decision.<br />
And you know what?!?!<br />
I was right.<br />
It was too soon...<br />
His body wasn't ready.<br />
and I <i>knew</i> it.<br />
But away he went.<br />
and he ended up sick again....<br />
<br />
Now we start over.<br />
<br />
When people see Parklen they often say, "He looks so good." and I want to scream.<br />
I want to scream "HE LOOKS GOOD BECAUSE WE KEEP HIM SAFE."<br />
He looks good because he isn't in school, around the boogers and the germs.<br />
He looks good because I watch his every move.<br />
He looks good because he is at home.<br />
<br />
I don't feel good about sending him to school.<br />
Even though its just for half days.<br />
I don't feel good about "seeing how well he does."<br />
Or "seeing how he handles sickness."<br />
<br />
Sometimes we have to let things go.<br />
Sometimes we have to let other people make decisions because our judgment is clouded with love.<br />
I know that being at home every day is not ideal for my son.<br />
I know that he needs to have more experiences.<br />
Knowing does not make it easier.<br />
<br />
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<br /></div>
So again, here we go with my precious glass egg.<br />
My now bigger version of my tiny miracle.<br />
My super hero.<br />
My Parklen.<br />
<br />
Letting go is my least favorite thing.<br />
Letting go of Parklen is my hardest challenge.<br />
The fact that my tear ducts have nearly run dry can attest to that.<br />
<br />
So with a recommendation by two doctors now, to <i>take it easy</i> and <i>ease my stress</i>.....for the sake of this unborn baby and my sanity....I have to wonder <i>how</i>?<br />
How can I?<br />
I don't know.<br />
<br />
By prayer and submission....<br />
By faith and belief.<br />
<br />
By an understanding that, although I know that God's way is not always the easy one...that His answers are not always the ones I hope and pray for.... Parklen's story has already been written and the pages that are to come...the ones that I have yet to read are already there.<br />
As I turn each one...<br />
crisp and new in my hands...<br />
each one...<br />
day by day...<br />
I can rest fully in the fact that God is there.<br />
Already.<br />
He is in every letter...every space...every inch of every page.<br />
Because Parklen is not just my baby.<br />
He is also <i>HIS</i>.<br />
And as much as I love him...and wish to protect him,<br />
God loves him even more.<br />
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<br />
Pray for us as we go through the next few weeks. As we find our new normal....again.<br />
As Parklen is thrown back into a classroom...into public....into an uncontrolled environment.<br />
Pray for protection,<br />
for peace,<br />
for success...<br />
Pray for Parklen.<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com1tag:blogger.com,1999:blog-2646981157367272656.post-62651377463177310052017-04-03T10:28:00.002-06:002017-04-03T10:28:37.182-06:00Snorkel....I have had a week.<br />
You know the kind.<br />
<br />
My snorkel has been taking on water with each wave that hits...<br />
making it hard to breathe...<br />
And the brief moment after it fills,<br />
I panic.<br />
<br />
Trying to remember the next step...<br />
Scrambling.<br />
Until I remember...<br />
And then I force the water out....<br />
Push it with prayer...<br />
<br />
I breathe.<br />
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<br />
I felt completely numb this week in Denver.<br />
The words,<br />
The plans,<br />
The advice...<br />
It felt ice-cold to me...<br />
<br />
I feel tired.<br />
<br />
I feel frustrated.<br />
<br />
I feel defeated.<br />
<br />
Parklen is not complete.<br />
and although that is true,<br />
his illness is not at its worst.<br />
He is not as bad as he once was.<br />
Which makes things tricky.<br />
<br />
It means that....once again,<br />
his future is uncertain.<br />
It means that for now,<br />
We wait.<br />
<br />
We maintain,<br />
<br />
We tread water.<br />
<br />
Clearing the water as it comes...<br />
pushing it out so that we can breathe.<br />
<br />
The doctor talked about some future options and places we may have to go...<br />
but the <i>if</i> and the <i>when</i> are not known,<br />
<br />
We convinced him to sign off on Parklen playing baseball this summer.<br />
He said, "Yes, lets give it a try. He will probably get sick...but lets just see."<br />
So.<br />
There you have it.<br />
<br />
The depths of the way I feel are hard to explain...<br />
It makes the "how was Denver" question difficult to answer...<br />
It makes the "how is Parky" question hard too.<br />
<br />
For now,<br />
We are just going to be excited about baseball.<br />
Excited for the chance for Parklen to be included.<br />
and we are going to focus on that.<br />
<br />
Yesterday at church the sermon was <i>"How do we respond to unanswered prayers?" </i><br />
It was a message spoken straight into my heart....<br />
Because God doesn't always answer things in the way we'd like.<br />
and we sang my favorite song <a href="https://www.youtube.com/watch?v=4mmgV6mPvb0" target="_blank">Mercies in disguise</a>, because if I am being real...<br />
Although hard,<br />
although difficult and oh so painful...<br />
I believe with my entire being that this is true..<br />
<br />
<i><span style="font-size: large;">Sometimes </span></i><br />
<i><span style="font-size: large;">blessings come through raindrops,</span></i><br />
<i><span style="font-size: large;">His healing comes through tears,</span></i><br />
<i><span style="font-size: large;">a thousand sleepless nights is how you know that He is near...</span></i><br />
<i><span style="font-size: large;">and sometimes...</span></i><br />
<i><span style="font-size: large;">the trials of this life,</span></i><br />
<i><span style="font-size: large;">are His mercies in disguise.</span></i><br />
<i><span style="font-size: large;"><br /></span></i>
It is never easy to find peace in the chaos..<br />
or calm in your storm...<br />
but when you do,<br />
God is there.<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-4599125224916963222017-03-23T22:22:00.000-06:002017-03-23T22:25:50.174-06:00Perspective. Around November 12th or so of 2008 God began to weave into my life a very important collection of words.<br />
<br />
There are many words on the list.<br />
All important.<br />
All thick with meaning...<br />
All lessons.<br />
<br />
But there is one word that seems to be repeated time and time again...<br />
through out the list it appears...more than once...many times.<br />
The word....<br />
<br />
<span style="font-size: large;">Perspective.</span><br />
<span style="font-size: large;"><br /></span>
I was <i>given</i> the gift of perspective.<br />
Not that I was asking for it or anything.<br />
It certainly wasn't mentioned in my daily prayers or over coffee with a friend...<br />
I wasn't looking for it.<br />
<br />
As the gift was handed to me, my arms gave way under its weight.<br />
It is heavy.<br />
Its outer shell isn't soft or smooth..<br />
more like the thick and scaly skin of a snake...or maybe a porcupine.....<br />
<br />
But,<br />
whether I liked it or not,<br />
The gift was given to me.<br />
<br />
It took days to open its first layer...<br />
a crash landing into a pediatric hospital for the first time...<br />
weeks in a medically induced coma for my baby.<br />
Breathing machines and emergency surgeries...<br />
and I began to see it.<br />
<br />
What was,<br />
and what was <i>not...</i><br />
important.<br />
<br />
Over the months and years the layers continued to peel away...<br />
Each experience shedding light on another part of the word.<br />
<i>Perspective...</i><br />
<i><br /></i>
I remember the first time I heard the cries of a mother losing her baby.<br />
I hear them still.<br />
They echo in my mind...<br />
they dance around with memories of faces of parents who had just kissed their babies for the last time.<br />
I see them.<br />
I hear them.<br />
<br />
I feel the hug of the dad who lost his son and cried out to me, "He was such a good boy."<br />
I feel it.<br />
Still.<br />
<br />
Perspective.<br />
<br />
Its understanding that these things are happening.<br />
Every.<br />
Single.<br />
Day.<br />
<br />
It's knowing that whatever your every day problems may be...<br />
there is someone that is praying for what you've got.<br />
<br />
It's teaching your children that tomorrow may never come,<br />
so don't ever waste today.<br />
That time spent together is the best gift...<br />
<br />
Perspective is shown most bright for me,<br />
when I look at Parklen.<br />
When I see an eight year old boy pray for a little girl.<br />
When he prays so much that his eyes fill with tears...<br />
When my eight year old son comes to comfort <i>me....</i><br />
When he knows more about death and more about life than most people three times his age.<br />
<br />
Perspective is when Parklen sees that death is not the end.<br />
When his words hit me like a smack in the face, "Don't be sad for her, she is with Jesus and that is where we all want to be...be sad for her family who will miss her forever."<br />
<br />
Over the past few weeks I have been able to watch my son show Christ's love to another. I have watched him with such pride and love. Watched as he put aside his childhood and stepped into the shoes of comforter.....of friend.<br />
He lives a rather lonely life.<br />
Stuck at home.<br />
No school,<br />
No activities...<br />
Not many friends...<br />
But my God, he knows how to be a friend.<br />
<br />
and he shows me perspective.<br />
<br />
There are not enough words in the world to describe the way we feel tonight.<br />
<br />
When I told Parklen that his friend had passed away, he said..."My heart is broken into a million pieces."<br />
<br />
I've never kept death from my children. I haven't ever had a choice in the matter....because our lives have run beside its river banks for 8 years. They have seen it first hand. They have known so many children who have been lost to illness. Parklen more than the rest of them. We have spent days praying for children together... He has spent a lot of time telling me about the comfort he felt from heaven when he was so incredibly sick. That somehow, God always was there with him and he knew it. We have talked through many difficult nights...and our conversations always lead to this, With Christ...death is not the end.<br />
<br />
The years that I have lived have taught me much,<br />
don't waste a breath...<br />
really, just don't.<br />
<br />
Don't take time or people for granted...<br />
LOVE each other....<br />
all. the, time,<br />
No matter what.<br />
<br />
Ive learned that good people get sick,<br />
That amazing people lose their children....<br />
That in the world of childhood illness....anyone is fair game.<br />
<br />
Be thankful.<br />
For it all.<br />
The good and the bad,<br />
the difficult and the easy.<br />
They all work together to form the person you are meant to be.<br />
<br />
Heartache sucks.<br />
No way around that.<br />
But God is so so big...<br />
<br />
Im thankful for the fits that are thrown,<br />
the messes that are made.<br />
I am thankful for the lives that have been woven together with mine.<br />
Im thankful the maturity of my children.<br />
I am thankful that Parklen is here with me.<br />
<br />
I am thankful for a little girl,<br />
that I believe was never human but an angel to begin with.<br />
I am thankful for the moments spent with her.<br />
In her very presence was a peace that cannot be explained.<br />
For her family.<br />
I am thankful that God saw fit to bring us together.<br />
I am thankful that Parklen had her as a friend.<br />
<br />
<br />
I am thankful that she is with Jesus...<br />
and remembering that with Him, is where we all want to be.<br />
<br />
💛💜💛💜💛<br />
<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-85989366328520688522017-03-16T21:10:00.001-06:002017-03-16T21:10:40.370-06:00Bitterness<br />
<br />
Bitterness takes over,<br />
when you feel that life's unfair.<br />
When your baby is sick,<br />
or your bills aren't paid,<br />
maybe the grey is taking over your hair.<br />
<br />
One thing after another...<br />
it always seems to be.<br />
Questions,<br />
rarely answers...<br />
Puzzles that are often missing a piece.<br />
<br />
Bitterness leaves a taste in your mouth,<br />
that can not be easily replaced..<br />
it can make the best things taste sour,<br />
the good taste bad...<br />
and the perfect things go to waste...<br />
<br />
It is so easy for me to find myself here...<br />
wading through the murky and muddy waters...<br />
Where I stand, bitter and angry...<br />
and alone...<br />
<br />
<br />
It takes a desperate plea in the form of a prayer...<br />
A good shake all the way down to my core.<br />
A friend,<br />
a memory...<br />
and sometimes...<br />
maybe just a little more.<br />
<br />
It helps when I remember<br />
all the places I have been,<br />
The highs,<br />
the lows...<br />
and everything between.<br />
<br />
8 years can seem like a lifetime..<br />
and also as a fleeting moment.<br />
<br />
When you look forward to tomorrow...<br />
When you strain your eyes toward yesterday,<br />
you miss what's meant for you to see.<br />
<br />
When you focus on the wrong...<br />
there is no room for the right.<br />
<br />
When you try to steer your own life,<br />
you're telling God He can't...<br />
<br />
Surrender is the hardest part...<br />
Knowing to let go.<br />
Remembering what all the hurt has taught you..<br />
you already know...<br />
<br />
Where you've been,<br />
has brought you to...<br />
Where your meant to be.<br />
<br />
And where you are,<br />
will lead you to,<br />
God's promise of victory.<br />
<br />
One day there will be no sickness,<br />
no blood draws,<br />
no pain,<br />
no worries.<br />
<br />
No waiting on test results..<br />
wondering what tomorrow brings<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNuj1_OXZuRZtLn-qHgGxxKe8GjDqHn6Mdb-LNFmW7HbBO-zt-3sF4zyjeysZOedsgIX6_yBTuQOLdnDxHNtq-7IHLaPOAjo7s6kaTHVblf_eQYm4M7MQqlKk3FH_PSlfLiU8Il_HBGGtF/s1600/IMG_5588.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNuj1_OXZuRZtLn-qHgGxxKe8GjDqHn6Mdb-LNFmW7HbBO-zt-3sF4zyjeysZOedsgIX6_yBTuQOLdnDxHNtq-7IHLaPOAjo7s6kaTHVblf_eQYm4M7MQqlKk3FH_PSlfLiU8Il_HBGGtF/s640/IMG_5588.JPG" width="640" /></a></div>
<br />
When that day comes,<br />
whether here or there..<br />
When the waves of life drift out to sea...<br />
I will dance with praise<br />
and sing His glory..<br />
<br />
In the mean time...<br />
I pray for release from bitterness..<br />
For the gift of focus..<br />
I pray to enjoy each moment as it comes.<br />
To be thankful for it all...<br />
the good..and the bad.<br />
<br />
Its in those moments of thankfulness that I find my greatest blessings.<br />
<br />
<br />
<br />
💜💜💜💜💜<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-36894831173302628692017-02-01T23:05:00.000-07:002017-02-01T23:05:39.008-07:00The Road.8 years is a long time.<br />
Its nearly a decade.<br />
Its made of almost 3,000 days...<br />
<br />
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<br /></div>
<br />
<br />
<br />
It has been 8 years, 2 months and 22 days since Parklen first showed symptoms of illness.<br />
It has been a long road.<br />
So, So long...<br />
I can remember most parts of it....more than I wish I did.<br />
Its a road that has been made up of hills and valleys,<br />
of pot holes and construction.<br />
<br />
7 years ago this very month Parklen was diagnosed with a rare disorder.<br />
It was a relief after over a year of illness with no explanation....I felt like a weight had been lifted. The road was bound to grow wide and bright...<br />
We ran with that diagnosis for some time.<br />
There was monthly trips to Denver, terrible drug infusions that kept him alive but made him feel awful. We spent weeks upon weeks and months upon months in a hospital. Infection upon infection...illness after illness. Surgery after surgery...<br />
He grew more and more ill as the days passed...<br />
And it was made known, that the diagnosis was not correct.<br />
<br />
There was so much time with Parklen fighting for his life.<br />
So much time watching a machine breathe for him in the ICU...<br />
Even at home he required oxygen just to breathe....<br />
He needed medications to keep him alive.<br />
Piles of pills every day to keep his body in check.<br />
And we lived each day trying to give him peace and happiness as he struggled.<br />
We watched as he was slowly dying.<br />
Unable to breathe,<br />
Unable to fight infection,<br />
Unable to live a normal day.<br />
His own body killing itself.<br />
<br />
And the days got worse....<br />
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<br />
And when we could watch him no longer,<br />
we took a desperate risk.<br />
A transplant...<br />
His brothers bone marrow...<br />
We were told, it may not work.<br />
We were told that he very likely might not make it to the other side.<br />
But we knew for sure, that without the try....he would die...<br />
So we took a leap.<br />
<br />
<br />
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He punched doubt in the face and rocked the transplant....<br />
We had more than a year of health and peace.<br />
He was a little boy...cuts and bruises, broken legs and lost teeth...<br />
He got dirty and smelly and loved every moment.<br />
<br />
He went to school.<br />
He made friends,<br />
he grew and loved and played.<br />
<span style="text-align: center;"><br /></span>
<span style="text-align: center;">We all danced in the light of his healing....</span><br />
<br />
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<br />
He breathed on his own...<br />
He laughed more than most kids...<br />
He lived as though every single day was an amazing gift.<br />
<br />
One day he got sick,<br />
just an average infection...<br />
The type that all of our kiddos pick up from school...<br />
But it took him a long time to recover...<br />
and when the infection was gone....he wasn't the same.<br />
<br />
So began the cycle.<br />
<br />
Infection after infection just halfway through his first real school year...<br />
and they didn't stop.<br />
<br />
With every one, he felt worse. and recovered more slowly.....<br />
<br />
Nine months ago began the bruises...and the bleeding.<br />
<br />
And he felt worse.<br />
Tired.<br />
Sick.<br />
Tired.<br />
<br />
They had no answers...no clear reports....<br />
Everything has always been such a mystery with Parklen...<br />
So they decided on a genetic test.<br />
These tests are complex and in depth and hard to understand. And even if I tried my best to explain...it would most likely make little sense...<br />
They look at parts of our genetic make up that most people never even know exist.<br />
They tested Devan and I to see if we had something that could've been passed along...<br />
They hoped that there might be an answer to Parklen's mystery....to give direction of how to help him.<br />
They told us it was about a 10% chance they would discover anything....<br />
But Parklen was worth the try...<br />
<br />
They did.<br />
Despite the odds...They found something.<br />
<br />
A genetic mutation.<br />
A genetic defect that explains everything he has experienced in his life.<br />
The infections,<br />
The immune issues,<br />
The breathing,<br />
The sickness...<br />
The everything.<br />
<br />
Rare (Can we all appreciate the pattern here? Parklen can't be bothered with average)<br />
There has been 100 people with this syndrome....<br />
100 known.<br />
Out of the billions of people that have walked the planet...they know of a hundred.<br />
There is little data...<br />
There is little research...<br />
There is not much known.<br />
<br />
<br />
A possible treatment..<br />
Bone marrow transplant...<br />
Remember..Parklen's done that...<br />
and his problems persist..<br />
The maintenance depends on the kiddos...<br />
But really is about what we do now.<br />
Blood tests and infusions.<br />
<br />
When they sent the test out, I began to pray.<br />
I prayed for an answer...<br />
For something that had been overlooked but would be simple and easy to fix.<br />
I prayed for a chance for Parklen to return to where he was a year and a half ago...<br />
<br />
We got an answer.<br />
But not what I had hoped.<br />
There is no cure.<br />
For what is known today...there is no end to the life we are living now.<br />
Increased risk of certain things...<br />
Continued seclusion...<br />
Precautions.<br />
Home bound...<br />
Maintenance to take Parklen from day to day...<br />
<br />
I cannot even begin to describe to you the degree of desperation I feel in reading through the packets that were given to me today. I cannot begin to describe to you, or a doctor or anyone else the absolute degree of sadness I feel in knowing that there may not be an end in site....<br />
<br />
This is the road...<br />
<br />
Its not guaranteed to be smooth or paved with ease...<br />
BUT...<br />
It is guaranteed to lead us to where God wants us to be.<br />
Which, if we're being honest...is not always an easy place to go.<br />
But Ive seen what Parklen has been through..what he has <i>shined</i> through.<br />
Ive seen the people who's lives he has touched.<br />
Ive heard the testimonies of faith that Parklen's story have helped to write...<br />
I know... that although this road seems so scary and awful and unreal to me now, God is going to work it all out for the good.<br />
<br />
Please pray for Parklen.<br />
Pray for us.<br />
Pray for me, as I struggle to keep my head up in the midst of this news....<br />
As I struggle to accept that what is....is.<br />
Because although I know <i>who</i> holds our future....its often hard to let go and trust what I cannot see.<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI9DoWK3IPCKP5YR7BM1Si6pMUwmKc9_MwH5EpCyee1ekDTeX1KX5vvwGTI6juUZvQ4YgG6rxuge7NnTUsnuh_RTXJ84Xhwv-OefFeUw9RHpnpAutLo1LrQmJE8h4wJ0vmIbnm37p1_klG/s1600/Screen+Shot+2017-02-01+at+10.23.26+PM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI9DoWK3IPCKP5YR7BM1Si6pMUwmKc9_MwH5EpCyee1ekDTeX1KX5vvwGTI6juUZvQ4YgG6rxuge7NnTUsnuh_RTXJ84Xhwv-OefFeUw9RHpnpAutLo1LrQmJE8h4wJ0vmIbnm37p1_klG/s640/Screen+Shot+2017-02-01+at+10.23.26+PM.png" width="640" /></a></td></tr>
<tr><td class="tr-caption">When a friend knows exactly what you need at exactly the right moment.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNY4E86B-6bPHAgxySLZuwGSEUecjgRSxZHXfxzog8kDq07DQv-qcQyY7AaJsfER5S3SBTJ2hygJT_AG_4uGlizfJPAELifYeLbgl8xVToZ-QlLwCFfDiNkhpu8ra7noHCARSlepwVJCSQ/s1600/Screen+Shot+2017-02-01+at+10.31.00+PM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="280" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNY4E86B-6bPHAgxySLZuwGSEUecjgRSxZHXfxzog8kDq07DQv-qcQyY7AaJsfER5S3SBTJ2hygJT_AG_4uGlizfJPAELifYeLbgl8xVToZ-QlLwCFfDiNkhpu8ra7noHCARSlepwVJCSQ/s640/Screen+Shot+2017-02-01+at+10.31.00+PM.png" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> I was sent this by a friend....</td></tr>
</tbody></table>
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<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com5tag:blogger.com,1999:blog-2646981157367272656.post-20669769098882721392016-12-20T22:16:00.001-07:002016-12-20T22:16:22.544-07:00Ramblings...I am pretty much behind....on everything.<br />
<br />
Work,<br />
Chores,<br />
To do lists,<br />
life....<br />
<br />
I wake up each day with the best of intentions...<br />
and I go to bed each night feeling like Ive failed..<br />
<br />
For months now....<br />
<br />
Life happens that way sometimes.<br />
We struggle with measuring up...to even our own standards.<br />
<br />
Its a trap.<br />
<br />
And, although I know that God wants more for my life...I struggle still.<br />
<br />
The other day I woke up to a little boy who felt crummy... <br />
Something that's happened probably a thousand times....<br />
over a couple of days, he felt worse.<br />
I woke up on Monday to a grey faced, lethargic Parklen...<br />
I loaded him up and headed to the doctor...<br />
and then to get labs drawn...<br />
and then back home.<br />
<br />
Once home, Parklen fell asleep quickly while I paced frantically back and forth, tightly clinching my phone...waiting for his doctor to call. My mind racing back to years ago...and the panic set in.<br />
<br />
Parklen ended up being admitted into our local hospital....<br />
Had our wind not been blowing 88 mph (I'm not even kidding) I would've most likely headed south.<br />
He looked so bad. <br />
He scared his momma.<br />
<br />
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A minimum of 48 hours inpatient and some meds were ordered...<br />
And so here we sit.<br />
<br />
Yesterday was scary....because Parklen looked so much like he did long ago....<br />
His doc and I both thought so...<br />
<br />
Last night was hard, because there was little sleep and lots of worrying...<br />
<br />
Today was hard,<br />
because we were stuck.<br />
<br />
In this room I sat, watching Parklen fall back into his former roll of hospital patient...remembering how to use his call button, maneuver around an IV pole...stare out the window...<br />
<br />
I sat today and thought of all the things that I haven't done.<br />
Some important....some less than...<br />
The things around the house,<br />
the plans we had to bake and make...<br />
the cleaning...<br />
the shopping...<br />
The school festivities I was suppose to enjoy with Paysen...<br />
<br />
All of it,<br />
left undone.<br />
<br />
I began having uneasy feelings days ago when Parklen first started murmuring about not wanting to spend Christmas in Denver...it seemed almost out of nowhere, but I think he knew something was cooking...<br />
<br />
Its been almost 8 years exactly...just a couple weeks past..since Parklen first was put into a hospital.<br />
8 years since I first discovered what it meant to have a sick child...<br />
8 years worth of heartache,<br />
8 years worth of worry...<br />
8 years.<br />
You guys....8 years.<br />
<br />
I am so weary.<br />
<br />
There came a time when I thought this part of our story was closing...the chapter complete...<br />
but the pages must have only been stuck together....because they continue to unfold. It seems that no matter how hard I try to slam the book closed....it finds its way back into our lives...<br />
<br />
Right now as I type out these words, I'm listening to Parklen giggle....he is feeling much better...he still looks a bit puny but so much better.<br />
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<br />
We're counting on some good blood results tomorrow so that we can head home.<br />
Because Christmas break started officially this evening....and for the love, we need to celebrate.<br />
<br />
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I'm so thankful for my tribe.<br />
The people who send pizza to the hospital,<br />
text to check in on us,<br />
pick up things from the school,<br />
bring me new leggings,<br />
bring coffee or lunch...<br />
send singing Batmans to Parklen (yes that happened today)<br />
Teachers who bring by gifts,<br />
the many who pray for us....<br />
<br />
I'm thankful for a wonderful doctor close by,<br />
for emails and messages from far away.<br />
<br />
I'm so thankful.<br />
In spite of my heartache....<br />
I choose to be.<br />
<br />
Please continue to remember Parklen in your prayers...because although he's come so far, he continues to struggle...<br />
<br />
And please take time to appreciate the little things in life..the school parties, the family time, the Christmas shopping, the every day.....I've said it many times before, but there is someone always wishing for the things you might take for granted....<br />
<br />
So when you receive our Christmas card in the mail....most likely after Christmas has passed...just know...that it was so important for the Henderson's to send it....even if it was late. Because our norm is a little different...but its ours :)<br />
and my gosh....Im TRYING.<br />
<br />
<br />
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<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-60545532225833279042016-10-29T23:43:00.000-06:002016-10-29T23:49:54.702-06:00Three years.Three years.<br />
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<br />
<br />
<br />
I spent my morning reading through messages and posts and stories from this day in 2013.<br />
I cannot believe its been three years.<br />
Then again....sometimes it seems like a lifetime ago.<br />
<br />
I can remember every ounce of raw emotion <a href="http://amandaandthehendersons.blogspot.com/2013/10/zero.html" target="_blank">that</a> I felt that day. I can remember the way my kids looked.<br />
<br />
The way Paysen handled the surgery, the recovery. The way he looked so small in that hospital gown. His freckles and his teeth as he woke up after the procedure.<br />
I can remember when they wheeled him back onto the floor and the nurses clapped... <br />
<br />
I can remember the way Parklen couldn't stop staring at Paysen when we brought him into his room. His frail little body laying next to his hero in bed.<br />
The way he picked at his fingernails like he does when he's nervous.... and just watched his brother.<br />
<br />
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I remember the way they giggled.<br />
<br />
I can see the room where Parklen lived.. The super hero window, the posters covering the walls.<br />
I can remember the doctors filling the room as we anticipated the transplant.<br />
The cooler that held Paysen's marrow being carried by the door and me following to take a picture.....<br />
The doctor leaning against the wall and accidentally pushing the "code" button....<br />
The flood of staff running in shortly after in a mild panic...<br />
<br />
I remember one of our favorite nurses...it was her first transplant....<br />
I can see her hooking the marrow up to the pump and smiling as we all stood around watching.<br />
I remember the boys eating pumpkin pie that another favorite nurse from our past had brought to them.<br />
<br />
Its all so fresh in my mind.<br />
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<br />
And next to these memories...tucked nicely into its own place,<br />
lives the hopes I felt that day.<br />
The immense feelings of hope and fear, intertwined together..<br />
The knowledge that this day would forever be a turning point in our lives...<br />
<br />
The first <a href="http://amandaandthehendersons.blogspot.com/2014/10/a-year.html" target="_blank">two </a>years after Parklen's <a href="http://amandaandthehendersons.blogspot.com/2015/10/two-years.html" target="_blank">transplant </a>were crazy.<br />
Many days in the hospital...<br />
Many days lived away from home...<br />
And many many days filled with health.<br />
<br />
I remember when they told me Parklen had officially engrafted.<br />
It was my birthday.<br />
It was the best gift I could have been given.<br />
It was that I saw a glimpse into our future..<br />
and it looked so bright...<br />
and for a while it so was..<br />
<br />
Today was filled with so much emotion for me. I had so much hope that three years later...things would be so different. And as much as I wish they were...they aren't what I had hoped.<br />
<br />
Parklen and I returned from Denver just 2 days ago... and we leave again in 4...<br />
Life is more mysteries and unanswered questions....<br />
<br />
I am so thankful for the day we had 3 years ago.<br />
It was the most significant day in my life.<br />
It showed me depth that I may have never seen otherwise.<br />
I was able to witness first hand a 7 year old hero in action.<br />
I got to watch Parklen receive his gift.<br />
I saw God more than a billion times that day.<br />
That day, enabled us to be here today...<br />
with Parklen.<br />
It gave Parklen a new start...<br />
a year in a classroom,<br />
months worth of running and playing and jumping.<br />
It gave him days without sickness and nights full of rest.<br />
It gave him the ability to be a boy...<br />
<br />
I have to believe that those times will return.<br />
I have to.<br />
Because the miracle that is Parklen...<br />
The things he has lived through and the mountains he has climbed...<br />
He has so much left to do...<br />
So many people to tell his story to.<br />
<br />
He had a rough start to his day.. a bit of bruising.. and bunch of fatigue and feeling crummy...<br />
but we ended on a good note.<br />
We carved pumpkins and ate chocolate cake...<br />
<br />
As I watched him laying on the couch this morning I had many flashbacks from our life before October 29th 2013...My heart hurts in a way that it never has before... but I am choosing to end my day on a good note too...<br />
and instead...<br />
think about the many miracles that have been given to us through this boy's life.<br />
I am going to fall asleep tonight remembering the good.<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-47288502464731221032016-10-13T00:16:00.001-06:002016-10-13T00:17:55.434-06:00TowerRight now it is after midnight...<br />
<div>
The house is mostly quiet,</div>
<div>
the background rumble of the clothes in the dryer....</div>
<div>
and the crime documentary playing softly across the room from me.<br />
Thats all I can hear...</div>
<div>
Everyone asleep...</div>
<div>
everyone but me.</div>
<div>
<br /></div>
<div>
I laid down for a few minutes....</div>
<div>
but quickly realized sleep was not ready to come.</div>
<div>
<br /></div>
<div>
My mind is overflowing....</div>
<div>
So.</div>
<div>
Many.</div>
<div>
Thoughts.</div>
<div>
<br /></div>
<div>
A lot of the things floating around in my head <i>tonight</i>....and <i><span style="font-size: large;">yesterday</span></i>, and <i><span style="font-size: x-large;">last week</span></i>....</div>
<div>
I refuse to speak out loud.</div>
<div>
Many of them...I try to drown out with prayer..... silence them before they take me over....sometimes it works.... but they always come back.</div>
<div>
And to be honest....a lot of my prayers end in angry cries.....</div>
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<div>
<br /></div>
<div>
One thing seems to stack upon the next....</div>
<div>
and the tower grows higher, and higher still....</div>
<div>
Until something small, a feather....</div>
<div>
taps it ever so slightly....and the pieces fall into my lap...</div>
<div>
tear soaked and messy.</div>
<div>
<br /></div>
<div>
Each morning I wipe my lap clean...brush the mess onto the floor as I get up.</div>
<div>
Throughout the day, I step over the pile of stress.....One foot over the other....</div>
<div>
and by the end of the day the pile has moved its way back into my head.....</div>
<div>
Rinse and repeat...</div>
<div>
Every.</div>
<div>
Day.</div>
<div>
<br /></div>
<div>
Parklen has been wading his way through his days too...</div>
<div>
He has ups and downs...</div>
<div>
He feels sad, and happy and scared....</div>
<div>
He feels good and bad and tired and angry...</div>
<div>
He cries...</div>
<div>
<br /></div>
<div>
We've been talking in our quiet moments...</div>
<div>
He asks me if I think he is going to die...</div>
<div>
I say, "<i>I don't....."</i></div>
<div>
He wakes up at night with nightmares...</div>
<div>
He asks me before bed, "<i>What if I don't wake up?</i>"</div>
<div>
<br /></div>
<div>
He lived in much worse health for many years.</div>
<div>
He is not nearly as sick as he was before...</div>
<div>
Its just simple fact...</div>
<div>
He isn't.</div>
<div>
<br /></div>
<div>
But I think that he feels something coming..</div>
<div>
And I think that feeling good for quite some time...</div>
<div>
has just made how he feels now, scary.</div>
<div>
<br /></div>
<div>
About a year after his transplant, I asked Parklen if he remembered what it was like to be so sick....</div>
<div>
He barely could...</div>
<div>
Through conversations about surgeries and treatments and hospital scares....Parklen would often say, "I <i>kind of</i> remember that...."</div>
<div>
and I counted that as a blessing...</div>
<div>
But It seems like him not remembering the terrible portions of his life...have made this time...seem worse than it is. If only he knew how sick he was before...but I suppose Im thankful he doesn't...and I pray he never gets the chance to re-learn.</div>
<div>
<br /></div>
<div>
I cannot convince him that it is going to be ok.</div>
<div>
The only answer that Parklen will accept when it comes to his worries is this;</div>
<div>
"I don't know what is going to happen, but God does....and the only thing I can say for sure, is that I will be by your side no matter what....and we will do this together."</div>
<div>
<br /></div>
<div>
And so I pray again....</div>
<div>
That God will lift me up...</div>
<div>
though I feel so broken...</div>
<div>
That he will piece me back together...</div>
<div>
and reinforce what once was there....</div>
<div>
So that I can be strong for Parklen...</div>
<div>
So I can help to give him a life that feels better for him...</div>
<div>
<br /></div>
<div>
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<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-37814916808822236302016-09-16T12:34:00.000-06:002016-09-16T12:34:41.200-06:00Hamster Wheel Did you ever have a hamster?<br />
<br />
I didn't...but a friend of mine grew up with any and every kind of pet you could imagine... hamster included. I remember watching the hamster though the glass as it ran on the wheel placed within its enclosure. Running its tiny little heart out to go....nowhere. If he had stopped running abruptly he would most certainly have fallen. So he just kept on running...on those tiny legs...around and around. Until, one can only assume..he became too tired...and he would begin to slow...slower and slower still...until it was safe to stop...or jump out.<br />
<br />
<br />
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<br />
I am sitting in the hospital room right now....Parklen asleep just feet away. His medication pumping in through his port...with only the sound of his IV pump as my company. And all I can think about, is that stupid hamster... who by the way, I am pretty sure escaped his cage and ended up dead in the clothes dryer....(irrelevant...) back to the point....<br />
<br />
I feel like I am running on a wheel....around and around.... carrying Parklen with me every day...holding him tight and reassuring him that he's on the road to being better.... but, we just keep running.<br />
<br />
Around and around....<br />
<br />
The soles of my shoes have worn, the skin on my feet can feel the burn of each impending step, yet...I run. <br />
<br />
Around and around....<br />
<br />
Waiting until its safe enough to jump off...or stop.<br />
<br />
The safety isn't coming.<br />
<br />
Parklen has been steadily declining in how he feels since last Christmas....More bad days than good. But we just kept running because, it was right for the season...everyone gets sick in the winter after all....so just keep running...but then came the spring....<br />
<br />
He showed his first really concerning bruise 19 weeks ago...<br />
A monster on his arm....<br />
in those 19 weeks, we have spent countless hours in a room just like this one. Parklen hooked up to a drug...waiting for our wheel to slow. Waiting for them to walk in with the lab results that say that Parklen is on the right track. We have tried 2 separate drugs...the first of which, proved to be fruitless. The one that currently drips into his body...proving the same. Because the numbers tell us....we have to keep running.<br />
<br />
I don't think that I could possibly count the hours that I spent in this clinic prior to the transplant....it was so so many....5 years worth of so many.... And in the months after the transplant, after we had gone home...I didn't see the walls of these infusion rooms...at all. I had only began to accept the fact that maybe Parklen was better.....fixed....maybe.<br />
The Henderson's worked their way toward a new normal, one that included things like school drop offs and after school clubs... homework, and friends......normal...or almost...<br />
<br />
I didn't want to be here again. And I HATE how comfortable it is for us. They all know us, I cannot take a trip down the hall without running into a friend Ive made over the years...The normal from years passed is falling back into place....and I desperately want anything but....<br />
<br />
I want to send my kids to school...all of them,<br />
I want to plan my schedule around our family and not around Denver trips....<br />
I want to go to bible study and hang out with friends....<br />
I want Parklen to bust up his knees on the playground...<br />
I want to go back to our <i>somewhat normal</i> existence...<br />
So, badly.<br />
<br />
We are going to pretend that all is well for this weekend.... because we are celebrating a certain almost 10 year old as a family....<br />
<br />
But,<br />
When we get home on Sunday...I will unpack our things...to wash and repack. Parklen and I will head back down on Monday and spend a couple of days here.... Parklen will go under again to retrieve more bone marrow for testing....in hopes that a new clue might present itself.... and then, we will go from there.<br />
<br />
So for now, we will just keep on running....and hope that our toward <i>nowhere</i>...becomes a toward <i>somewhere.....</i>Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-2526769411463446522016-08-08T23:04:00.001-06:002016-08-08T23:04:33.733-06:00Working toward new...I was walking through the store the other day...<br />
Everywhere I looked there was someone pushing a cart full of school supplies.<br />
Notebooks,<br />
Pencils,<br />
Glue sticks,<br />
Backpacks.....<br />
My eyes darted from cart to cart...and I fought back tears...<br />
<br />
Devan walked ahead of me...unaware of my impending breakdown.<br />
<br />
Just people...probably mostly parents...<br />
buying supplies...<br />
for school.<br />
<br />
No big deal...right?<br />
<br />
All I could think about though...<br />
was how I would be shopping for only one boy to return to school this year.<br />
Because, we have all that we need for Parklen to have school here at the house...<br />
Our basement doesn't require special supplies...<br />
<br />
I had such high hopes three years ago...when we entered into transplant...<br />
my hopes for a new life for Parklen grew as he smashed through chemo and the receiving of his brother's cells....<br />
When he got to go home much earlier than anticipated...they grew again.<br />
It was a thought always in the back of my head...but each time he flew over a hurdle...I let myself believe a little bit that it was possible for him to leave the life of illness behind.<br />
<br />
<br />
Over the last couple of months, we've been working on a treatment plan for Parklen as he struggles with these new issues that have come his way. And still... he isn't resolving.<br />
<br />
I was sad for him when he couldn't go to Kindergarten and had to stay home for the year....<br />
but I am extra sad now.<br />
<br />
I'm sad because, I want him to have the things that are important to him....<br />
friends,<br />
routine,<br />
teachers...<br />
<br />
I can close my eyes and see Parklen's face on that first day of first grade.<br />
The excitement he had to be inside of a classroom...<br />
The way that he grinned when he sat in his place.<br />
I can see his face and hear his voice as he told me about his first day. <br />
<br />
I haven't actually told Parklen that he won't be starting in a few weeks. I just cannot do it.<br />
He is struggling with some feelings of depression. He is having more moments of sadness than happy. Spending much time laying around...sleeping....feeling tired....feeling sad. He is emotional about everything. Much of that can be blamed on his condition or on his medication....but some of it, I believe is just him being over it all.<br />
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<br />
Parklen and I are here in Denver.<br />
We will go in for appointments tomorrow. <br />
We will start down a new path.....different treatment plan.<br />
<br />
We took a camping trip this weekend. It was a decision that rested on how Parklen felt...how his blood test looked. It was a decision that I wanted to say no to. I wanted to say no because I am so darn tired. But when I looked at the excitement that Parklen had when he heard that his platelets were still high enough for activity....I knew that I had to say yes.<br />
<br />
It has become my normal to make my life decisions based on things like that. So, I packed up the car and we headed out. Id like to say I slept on the way out of town....but I sat wide awake. Next to my husband...and I thought of all things Parklen.<br />
<br />
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The weekend was a little crazy...<br />
the weather was rough....<br />
The Wyoming wind had its way with our tent...<br />
But, the kids had fun....and that makes any amount of trouble...worth it.<br />
<br />
<br />
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I will just leave this here now...because I don't want to whine......<br />
and ask that you pray for my boy (<i>again) </i><br />
pray that this new plan works...<br />
that he recovers...<br />
that he returns to the land of health....<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-59420909157591828672016-07-12T23:04:00.001-06:002016-07-12T23:04:09.821-06:00Fights on..I reached across his chest and helped slide the belt into the buckle....<br />
Our eyes met.<br />
Bravely, with an undertone of sadness...he said, "I just don't want to do this stuff anymore."<br />
<br />
I smiled and choked down the tears that were threatening to make their appearance..<br />
"I know baby, me neither."<br />
<br />
I walked around the backside of the car and climbed into my own seat. Deep breaths helped me to belt myself into place. I rolled down the window and pasted a smile.<br />
<br />
There in the yard was my nine year old. Pressing himself against the fence, his freckled face showing his feelings. The whites of his eyes turning quickly red. His forced smile, a lot like mine...beginning to fade. "Bye mommy, I love you."<br />
<br />
I look further and see my baby. She sits in the arms of my mom...on the porch that leads to my home. She waves her chubby fingers at me and screams about how much she will miss me. Her eyes also filled with tears. Earlier that morning she had whispered, "I will miss you mommy, but just look for me in the stars." I wonder when she began to grow up so quickly....and I shiver at the thought of all that Ive missed. With her....with her brother.. The moments that have been stolen by their brother's illness....<br />
<br />
I wave and smile as I begin to drive away. <br />
I begin to remember....<br />
The first time,<br />
the second time....<br />
the 50th time...<br />
that I have had to leave someone behind to head south.<br />
<br />
I remember the tiny face of my little boy who was only 2 the first time I left him behind. His tiny voice on the other end of the telephone....<br />
I remember the tears that he shed then...<br />
and now his sister....<br />
her face, her tears...<br />
They haunt me.<br />
<br />
The boy in the rearview mirror....he haunts me too.<br />
The site of his face, when its filled with worry and fear...<br />
The tears that he sheds in silence as we drive down the road....<br />
Those visions keep me up at night.<br />
<br />
Most things in my life are out of my control.<br />
<br />
Most things come my way whether I welcome them or not.<br />
<br />
We left the apartment building first thing this morning...Parklen walking beside me...refusing to hold my hand... busy picking the already too short nails on the end of his fingers.<br />
<br />
He walks quietly... looking at the ground.<br />
<br />
Once we get to the hospital...he begins to remind me of how hungry he is. His procedure requires him to not eat....<br />
<br />
We settle into his infusion room...<br />
The normal tweaks,<br />
Adjusting his bed just the way he likes it,<br />
Finding his favorite channel on the t.v.<br />
Vital signs taken...<br />
The revealing of his nurse for the day...<br />
The inserting of the needle into his port...<br />
The pre-meds pumped into his body...<br />
The waiting game for pharmacy to send up the med (somehow its always a surprise that we're there)<br />
And then the infusion begins...<br />
<br />
Parklen refuses to speak to me.<br />
He wants to look anywhere besides in my direction.<br />
I am the one who has driven him to this place...so he blames me...<br />
I accept this for him...<br />
Its easy to let him blame me, I am his constant...and I will do whatever I can to make his life a bit better....<br />
He makes small talk with his nurse but nothing more than one word replies...<br />
As the medicine pumps through his veins, he continues to ignore my presence....<br />
He half heartedly participates in some physical therapy and manages to dislodge his needle....causing an infiltration of his medication into places it wasn't meant to be...instant swelling..stopping of the meds....<br />
Needle taken out,<br />
new needle placed in....<br />
medicine started again....<br />
3 hours have now passed....as the doctor walks into the room to speak to me....<br />
We talk about the puzzles...the known, the unknown...<br />
no matter what he says, I feel the same. The same as I have felt many times before...<br />
The feeling of the other shoe ready to drop....<br />
They come to collect him for his procedure...<br />
<br />
Parklen walks down the hall... next to me, and next to his IV pole. He pulls more skin from his fingers as he looks to the floor...step by step....he walks quickly, nerves.<br />
<br />
We walk into the room and introductions take place...<br />
I help him onto the table....something I have done dozens of times... <br />
He shivers and they wrap him with a warm blanket..<br />
I help him to lay down as they show him whats going on around him...<br />
"Can I please see the needle?"<br />
and the doc looks straight to me...."show him."<br />
If there is anything I know about Parklen and hospitals...he doesn't like secrets or surprises...he desires to be in the know...and as scary as it is...he would rather face it head on that be kept in the dark.<br />
They pull a needle from the cabinet and hand it over for him to see.<br />
He studies in through the packaging as the doctor explains which part will be inserted into the back of his hip...his face unsure as he says, "ok."<br />
I ask him if he'd like to hold my hand, "no."<br />
I watch, he watches, as they begin to push the medicine into the tubing....seconds is how long it takes for him to drift away... I lean in to kiss his lips and then walk out of the room.<br />
I tried before, to count the times Ive watched Parklen be put under anesthesia....I lost count...I know that its more than 45 and most likely more than 50... little procedures, big ones.... long surgeries and quick ones...<br />
<br />
I walked down the hall back to his room and waited.<br />
Visited with the doc some more....<br />
They bring him into the room still asleep...<br />
He sleeps soundly for over an hour. (if you wake him up...its not pretty...for anyone)<br />
<br />
I lean over and gently whisper..."Parklen, its time to wake up."<br />
His eyes flutter a bit as he considers whether he's ready to pry his lids open.<br />
A few minutes pass.<br />
Again, "Parky, its time to get up."<br />
I set a juice on the table in front of him...enticing the thirst and hunger within him.<br />
He stirs.<br />
I help him to sit up and watch as he drinks.<br />
He has told me before that there is nothing that tastes as good as juice after surgery..after the hours (sometimes days) he has gone without a drink...<br />
He eats and he drinks.<br />
and then,<br />
He asks me to come and lay with him...<br />
I oblige...<br />
and he snuggles in.<br />
He doesn't quite fit the way that he did years ago...when we would sit in the same room for hours at a time... He looks over and leans in to kiss his momma.<br />
I begin to breathe easier.<br />
<br />
We spent the afternoon and evening together...in the hospital and out. We ate dinner together, we laughed together....<br />
He told me that he's very sore where they took their samples...<br />
But, he has been in the best spirits that Ive seen in a while.<br />
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<br />
Parky fights on...for how long he must, we do not know.<br />
We will wait for these results and see if anything changes...<br />
Parky fights on.....<br />
<br />
<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com1tag:blogger.com,1999:blog-2646981157367272656.post-59529451734558677862016-06-06T23:24:00.001-06:002016-06-06T23:24:56.224-06:00Mostly...<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
<br />
<br />
<br />
It was a few weeks ago,<br />
<div>
The kids were tucked nicely into their beds and I plopped down on the couch next to Devan.</div>
<div>
<br /></div>
<div>
I pulled out my computer and my planner...</div>
<div>
and began to mark down the <i>to do's</i> for the summer...</div>
<div>
The boys baseball games, weddings to photograph, appointments to attend, summer school, piano practises.....</div>
<div>
Our usual summer wish list of things we hope to do.</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
The schedule quickly started to fill up. As I glanced over the first page I noticed that many of the boys games were on the same nights...at the same times... I sighed loudly as I looked over to Devan, "How am I going to manage all of this by myself? How will I be able to see them both play?" I was seriously stressed out about it. I tend to do this... find something.... obsess over it.... </div>
<div>
<br /></div>
<div>
It was the first year that Parklen would be playing a sport. He had chosen baseball...which was delightful to me, because it just happens to be my favorite. He was super adorable walking through the store choosing his gear....a smile from ear to ear.... giggles over pants and gloves....</div>
<div>
<br /></div>
<div>
Parklen was able to attend one baseball practise before it all changed. </div>
<div>
<br /></div>
<div>
See, these are the things that the average parent gets to worry about..... </div>
<div>
<i>How can I juggle these sports schedules...</i></div>
<div>
<i>What time is practise....</i></div>
<div>
<i>Who goes where......</i></div>
<div>
<i><br /></i></div>
<div>
Ive had a little taste of the norm....small...</div>
<div>
Parklen went to school.....although he missed many days....</div>
<div>
Parklen made friends,</div>
<div>
Parklen learned....</div>
<div>
Parklen was able to take piano lessons.....</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
I spent many mornings dropping <i>two</i> boys at school....and afternoons picking them up.</div>
<div>
I attended a field trip....</div>
<div>
I packed Parklen lunches....</div>
<div>
I let go of him a little bit....</div>
<div>
I was able to watch brothers walk together onto the playground....</div>
<div>
<br /></div>
<div>
There has been a difficulty for me since the transplant....</div>
<div>
an inability to let go.</div>
<div>
<br /></div>
<div>
Let go of the worry.....</div>
<div>
Let go of the fear...</div>
<div>
To let go of the life we had lived....</div>
<div>
<br /></div>
<div>
I have known for quite some time that something was going on with my little guy....</div>
<div>
Though, the tests did not reveal a problem for many months (Deja vu) </div>
<div>
There was a time, years ago, in which I spent many nights laying awake and wondering if I was imagining Parklen's sickness....since the tests never showed what my eyes saw.... I could not count, the nights I spent like that....even if I tried. </div>
<div>
I would talk to God, talk to myself.....wondering repeatedly why it was only I who saw... I have been able to predict each time he has fallen ill....I can see the changes as they begin each and every time... Like an injured knee predicting a storm...I can <i>feel</i> it. </div>
<div>
I can say, "There will be rain...." </div>
<div>
<br /></div>
<div>
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Last month....the tests caught up with my worries a bit...</div>
<div>
We had just left for a surprise road trip when I noticed the first bruise...</div>
<div>
I shoved down the lump in my throat...determined to enjoy our family trip ... </div>
<div>
<br />
A few nights before we loaded up to go I lay silently in bed...I could feel the tears rolling down my face and I waded through the many apprehensions I felt about taking a trip.. The things I had noticed about Parklen made me nervous to take him across the country...I played a serious game of tug of war with myself...to stay home, to go.....</div>
<div>
<br />
At a certain point I heard an almost audible whisper....."Go" </div>
<div>
I wiped the tears and decided that Parklen needed the trip...that we all did. </div>
<div>
Devan was set to leave for his final internship and knowing that our time together would be scarce this summer made the trip that much more important. </div>
<div>
<br /></div>
<div>
As the bruise on Parklen's arm began to grow throughout the day...I felt scared. When he woke up with more bruises the next day....I felt worse. He felt ok, just a little tired... and by the time that the bruise had taken over his arm we were already on our way home. </div>
<div>
<br /></div>
<div>
Once home, a blood test revealed that his platelets were low. Something we have dealt with before...but not in quite some time. A few days later we went to Denver and they took some bone marrow for testing.... </div>
<div>
<br /></div>
<div>
The next day, a tired Parklen...a cranky Phin and I headed back to the hospital to go over the results. </div>
<div>
A new condition.</div>
<div>
Another diagnosis.</div>
<div>
<span style="background-color: white;"><span style="color: #111111; font-family: "arial" , sans-serif;">Idiopathic Thrombocytopenia Purpura</span></span></div>
<div>
Big deal....or not....With Parklen, you can never say...</div>
<div>
Because he has his own set of rules....his own standards...</div>
<div>
<br /></div>
<div>
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I have been reflecting on the night in which I thought that an overlapping schedule was my biggest worry.... thinking about how I am now going to be driving to Denver once a week for a while....and twice a month after that... thinking about how I missed 3 of Paysen's games in just the last 2 weeks...<br />
and how there won't be any double bookings in the way of baseball this summer...because once again, Parklen will be seated on the bleachers...<br />
<br />
I've been thinking about how Parklen woke me up in the middle of the night crying...saying he was afraid to die... thinking about how he rarely talked about it before...when he was much closer to it... how he said, "I don't want another disease...why do I always have to have a disease?"<br />
<br />
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</div>
<div>
<br />
Ive been thinking about how Paysen feels with a new road block in our lives...</div>
<div>
Thinking about how his sadness over his brother shows up in different ways...</div>
<div>
<br />
Ive been obsessing over Parklen's face when I told him that he couldn't play baseball...and that we would have to wait to even go camping....</div>
<div>
<br /></div>
<div>
Parklen is a mess.</div>
<div>
His medicine makes him unable to control his emotions...he is irrational and weepy..he is angry and sad....</div>
<div>
He says he feels mostly bad and very tired...</div>
<div>
<br /></div>
<div>
He's having trouble sleeping through the night....</div>
<div>
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<br /></div>
<div>
It all seems to be harder on him....and on me.</div>
<div>
When Parklen was sick before...he knew nothing else. He had <i>always</i> been sick. He didn't have healthy memories to compare his sick days with... The sum of his days...were <i>sick</i>.</div>
<div>
It wasn't until after the transplant that he got to live like a little boy... He got to make memories that were stitched together with the thread of health. </div>
<div>
He was able to discover what feeling good was all about.</div>
<div>
<br /></div>
<div>
And now, when he feels bad...and when he has to miss out on things...and spend hours in a hospital room hooked up to medicines....he has those memories to compare his time with....</div>
<div>
<br /></div>
<div>
As if knowing what good feels like....makes bad that much worse... </div>
<div>
<br />
When Parklen was sick before....I did what I needed... <br />
It was my norm.<br />
Every day was about keeping him alive...about being his spokesperson...<br />
It was what it was...<br />
I knew nothing else..<br />
and the months without an emergency that happened after his transplant....they changed my norm...and I am struggling so much more now...than I did then.<br />
<br />
It is so hard to explain...<br />
So difficult to convey...<br />
<br /></div>
<div>
Pray for Parky.. </div>
<div>
and never stop...</div>
<div>
because although the battle of his transplant has somewhat fizzled out...the war has not been won. He needs you to remember him... He needs the prayer. </div>
<div>
<br /></div>
<div>
And while you're at it...wont you pray for me too?!?!</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
I too...feel mostly bad and very tired.</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com4tag:blogger.com,1999:blog-2646981157367272656.post-29765867433579113332016-05-04T00:08:00.004-06:002016-05-04T00:08:55.705-06:00{3}<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi10Xj30T1UTLsa9JzlRhqN6sc2LGmHZZ2K44ESkc2SqSbP44CVKNtzmID29jorA5QyDKvVxhGbbXok8schSluX1b590J0lTtvQWuhtkBDHY0IH9L7IpNqBw46n3-R6Ds582QhZm8i9ygsk/s1600/1d9ffa824ff6883e23559118a818df3b.jpg" imageanchor="1"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZcElE3Dsb5aCwW8fS9UcbSyiL4odU2E6lXZDZHs9Aa_mPRIhM6TEjV3-SjHFJ35Hm41TKdbDyFrc8hiPVBGUu8T4HZG2CqhjfJsjYp416p4EGrMqKn4VfCehpK1Ks1lwuTKxb3I4qUbfz/s1600/phinpin.jpg" imageanchor="1"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZcElE3Dsb5aCwW8fS9UcbSyiL4odU2E6lXZDZHs9Aa_mPRIhM6TEjV3-SjHFJ35Hm41TKdbDyFrc8hiPVBGUu8T4HZG2CqhjfJsjYp416p4EGrMqKn4VfCehpK1Ks1lwuTKxb3I4qUbfz/s640/phinpin.jpg" width="640" /></a><br />
<br />
There is very little that is quite the same.....as mothering a daughter...<br />
Three years have flown by in the blink of an eye.<br />
My little pixie...<br />
convinced that she can do anything...<br />
and I will never convince her otherwise...<br />
<br />
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She is funny,<br />
She is smart,<br />
Clever,<br />
and sweet.<br />
<br />
She loves to tell stories of make believe....<br />
She is best friends with an imaginary Dinosaur named Gracie..(I couldn't make this up)<br />
She prefers to play by herself or with her "Parks" (Parklen) instead of with kids her own age....<br />
She spends hours a day making pretend pancakes in her tiny kitchen.<br />
She loves to mother her baby dolls...<br />
Sing,<br />
Dance....<br />
<br />
She can melt your heart with her tiny voice.<br />
"Dance with me mom"<br />
Spinning circles in the living room....<br />
<br />
She holds her daddy's heart.<br />
The key to her brother's insanity....<br />
<br />
She offers my greatest challenges each day, and my sweetest rewards at night when I tuck her in (who am I kidding...she never sleeps) as she asks me for <i>one more hug.....</i> or <i>just another kiss....</i><br />
<br />
She loves hugs and kisses and songs and stories....<br />
<br />
<br />
<br />
Phin turned 3 last week..I was so incredibly filled with emotions on that day...<br />
Maybe because she is my baby...<br />
maybe because time is ticking by more quickly every day...<br />
I managed to forget to record anything....<br />
I felt like I was barely even there...as the people sang and the presents were unwrapped...<br />
It was over in a flash....<br />
<br />
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There is always a cloud of stress that looms above me... following my steps and keeping time with my rhythm. It sprinkles down droplets....remembrance of days gone by. The cloud refuses to let me forget.<br />
<br />
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But.<br />
<br />
If I am not careful...that cloud has the ability to steal my joy. To lose focus on the day before me as I fight to swim away from yesterday...<br />
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Thanking God for three years with our lovely daughter....three years with the most amazing surprise one could receive... and unexpected child... she completes our family in ways we could have never imagined. She brings forth new life each day...she came into our world at the perfect time. She shed light on our hardest days...and continues to brighten our lives....<br />
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Here is to another year of life with you....<br />
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Phinlynn.<br />
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We love you.<br />
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<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0tag:blogger.com,1999:blog-2646981157367272656.post-37860857614689348342016-04-25T23:14:00.000-06:002016-04-25T23:14:11.790-06:00been a day...<br />
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"It has been a day......"<br />
I thought to myself as I slumped down into the couch...<br />
The kids finally tucked into their beds,<br />
and the first moment of silence for the day rang calmly in my ears....<br />
<br />
The moment of peace quickly faded as the list of <i><span style="font-size: large;">worries</span></i> quickly found their place at the forefront of my mind.... constant. Ever present.... <br />
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It has been more than <i><span style="font-size: large;">a</span></i> day.....<br />
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There is an elephant that smiles down at me as he perches himself upon my chest....as if to say,<br />
"Yes, I'm still here..."<br />
Although, I already know this to be true...because the weight .....oh the weight...is hard to bear...<br />
Each breath feels heavy and hard to grasp....<br />
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and why?!?!<br />
<br />
Not one reason....but many.<br />
The worry resides...<br />
<br />
The ever present companion....<br />
The unknown...<br />
<br />
I yearn for a breath so deep...<br />
for the weight to be lifted.<br />
<br />
and Yet,<br />
I struggle.<br />
<br />
Too much swimming through the rivers of my mind to convey...<br />
too deep of waters to wade...<br />
<br />
I pray for relief...<br />
and I know...<br />
He hears...<br />
but for now, He is <span style="font-family: Courier New, Courier, monospace;"><b>quiet</b></span>...<br />
<br />
When you think of it....wont you pray for me? For us? For the breath....for the weight to be lifted.<br />
We know...I know that the goodness of God will overcome...even in dark days...<br />
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It seems that in the midst of struggle...life carries on... Phin just turned 3, are you kidding me? Parklen is currently preparing to turn EIGHT...that cannot be possible... Devan is working on the biggest project of his graduate school career...he presents this week.... Paysen...growing, in height and character.... <br />
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And so... I carry on.....<br />
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<br />Amandahttp://www.blogger.com/profile/02525544441343835230noreply@blogger.com0