Amanda and the Hendersons

No cell service, No Internet, No worries...... This is how the boys and I spent our holiday. In a cabin, In the woods, Atop the mountain...... The smell of a wood burning stove and fresh mountain air, clearing all worry from our minds. Sometimes, a cool breeze and a bunch of trees........ is just what you need. 

My shoulders have felt heavy.  I feel like I am gasping for air. When it comes to Parklen..........I feel overwhelmed.  Denver has been back and forth with me, still with no certain plan. A couple of years ago, I was given a meeting with the BMT (Bone marrow transplant) team.  It was one of the hardest things I have done to date.  I was told that often, as a last resort, children with ALPS are given a transplant, It takes months of living in Denver for Preperation and months after the transplant for recovery.....I was also told that with a child like Parklen, survival rates were only 60%  meaning that 40% don't survive.  After the meeting, I did my best to push all of this to the very back corner of my mind.  Since then, I have thought about that meeting only a few times, each time feeling sick and forcing myself to forget again. When I spoke to Denver on Monday, the Dr. said to me, "We are not quite convinced that its the right time for a ...

The past two weeks have been a blur.....There has been so much going on and so quickly. It feels like it was only yesterday....I took my two year old Paysen to his first day of preschool.  That entire year, every Tuesday and Thursday the teacher's would have to pry a screaming Paysen from my leg.  He never wanted to be away from me......By the time I would pick him up a couple hours later, he was done crying....But it was the same every time.   Now, he is five.  He graduated from Pre-school thursday.  He is growing so fast. So fast.  He is ready for Kindergarten.  I am not ready for him to go. I want to hold him here, where I am his most favorite person, where his hugs and kisses come freely.....where we are.  I know that helping him grow up is my job, I just cannot believe how quickly it goes by. This is how he sees himself....pretty cute! I am so proud of this little dude. He is so smart, so sweet and so much my baby...

I have been on the phone too much with Denver.  I keep calling, only to hear that they have no new information for me yet.  This annoys me, although I know there is nothing I, or they, can do to change it.  Waiting on test results takes time.......it just takes more time than I like.  I don't find myself worrying much about the results....instead more about what the next plan will be. Our whole perspective has been changed.....Its crazy how quickly that can happen. What the doctors and us had thought....wasn't the truth.  Although we were sure he was improving......it was quite the opposite.  I keep staring at the pictures...of his lungs, of his stomach and his colon......I cant stop myself.  Like, maybe if I look long enough the disease will melt away......it wont.  So, what will we do?!!?!?!?  Who knows......even with all my guesses.....I'm not sure.  After church on Sunday, our pastor and his wife prayed with me........

What a week it has been......I have been walking around in a strange haze since last Thursday. Unable to really feel anything...   I have two days in a row of celebration this year.....Both honoring one of the best days in my life.  Becoming a mother, and becoming a wife. Yesterday.....mothers day......was a nice.  My boys spoiled me, I got to spend some time with my mama and sister and I EVEN got a two hour nap......  can't beat it.  Today is mine and Devan's anniversary......seven years of marriage...SEVEN! It feels so good....not only being married for seven years but being married for seven, very hard years.  So many obstacles have shot our way......and with God's help, we have overcome.  We have stayed married through more difficulties than many people divorce for......and THAT is something to celebrate.  I love Devan....not because of butterflies in my stomach (although he still gives me those) I love him because every m...

Ok, so I know......Three blog posts in just a few days is NUTS.....but I'm sorry, writing this stuff out makes me feel a whole lot better about everything.....when I'm stressed, I write...... Being a "hospital mom" has taught me many things......about hospitals, about insomnia, about medicine, about doctors, nurses and so much more. When we are in the hospital (I say "we" because I stay with Parklen, pretty much the whole time) I have a few routines I follow, always......... No matter how hard the night is.....and they are hard, containing continual wake ups for meds and vitals and check ups..... I always set my alarm for very early.  I get up and take a shower and get dressed like I have some place to go, even if that place is NOWHERE.  I do this at home too....dressing up.  It makes me feel so much better than wearing sweats and greasy hair.  I have to wake up early in the hospital so I can get a jump on the day......Doctors start arriving early in...

It has occurred to me, after explaining Parklen's disease to yet another nurse.....that maybe many of you don't actually understand whats going on with my baby...... As I sit here watching him sleep in this hospital room , I thought I should take a few minutes to explain his condition to you......I am always asked, "whats wrong with Parklen?" and Many people have the understanding that he is just sick a lot.  Not the case. Parklen was healthy up until he was six months old......at that point he developed chronic fevers....coming every day, him being my second child, I knew that this wasn't normal and picked up on the fact that "something" was wrong.  He suddenly had golf ball sized lymph nodes in his neck, this led to him being hospitalized in our home town, there, he was misdiagnosed with Kawasaki's Disease and treated.  We were released from the hospital and just a day later Parklen was much worse.  Our pediatrician instantly felt the urgency...

I have attempted to write this post more than a few times......each time ending with tears on my keyboard and puffy eyes. Sometimes I find the words so hard to find.....The words that can capture my feelings just right.  I love being a mother, It is all I ever wanted and more......I just didn't imagine the "kind" of mother I would actually be................... Parklen turned four on Saturday.....this is a fact that I have avoided saying out loud and even thinking.  Its so crazy to me.  Crazy because four is pretty old.....crazy because at one point we didn't know if he would make it to one....crazy because the past four years have been the toughest IN. MY. LIFE.  Parklen's birthday marks a lot of things for me.  Not only do I celebrate the very existence of my tiny miracle......I also reflect on the mountains and valleys that God has brought us through. My emotions have been a roller coaster the past couple of weeks.....and not a good kind of roller co...