Thursday, August 29, 2013
Here I am, sitting next to Parklen in his hospital bed..typing these words as I bounce the baby in her seat. This room is so normal to us, even the baby......it feels natural for us to be here.
Parklen had surgery today. Back when he was sick this summer and had a perforation in his bowels, they were forced to surgically separate his intestines. He has had one end sticking out of his tummy for the last two months. On our way to Denver yesterday, Parklen pointed at his belly and the part sticking out and said.."Mom, tell me exactly when they are gonna get rid of this guy?" They repaired it today.
I have said it before, but surgery isn't such a huge deal for Parklen any more. He spent his morning asking me how long until it was time. He knows the routine......he remembers the faces of the surgical nurses, the anesthesia team and his doctors. He was thrilled today when they gave him a purple donut pillow to rest his head upon....and so confident as he took giant breathes, enabling his tiny lungs to suck up the gas.....putting himself to sleep.
We were sitting in the pre-op room....just staring at one another and killing time with small talk. I was just beginning to think about how many times we had been here before. Parklen and I, together, counting down the moments until his surgery. Things are a bit different now....we have the beautiful distraction of Phinlynn.... It is hard to do anything but smile with her coos and grins filling the room. Parklen was sitting in bed and waving to the staff as they walked by his door. I started to feel a little sad. Sad that my child, at just five years old, is such a pro at such a scary thing. Sad that its not strange to us. Sad that this is our norm.... I was really feeling the sadness as someone poked their head into the door.
I looked up to see a face I had never seen before. Her words were simple, "This may sound weird, but I recognized Parklen's name, and I read your blog...I just wanted you to know that I am praying for you."
I was holding back tears as I heard these words. A stranger....in front of me, telling me how she prays for me, for my son, for our family. At my moment of sadness God sent someone to speak encouragement. He sent a stranger....who knows about me from the words I write upon these pages. I don't doubt that her encouragement came at the right time....I don't doubt that she was sent to me and I don't doubt for a moment that this woman and I will become friends.
This isn't the first time that something like this has happened to me.
Over the summer when Parklen was in the ICU I would spend many moments sitting and watching people walk by his room.... Seeing a lot of the same faces move past. Some people always alone, some with their spouse...some even with other children. One of these days, as I sat and watched the people pass, I saw a new family being brought in next door. As they passed, the woman looked through Parklen's door and our eyes met. She gave me a subtle smile and then moved on.
Hours later, I went downstairs to eat a late dinner. It was later in the evening and most of the people from the daily grind had gone home. I usually find extreme comfort in the silence of eating alone while I am here. I usually love to gather my thoughts and reflect on what has happened during the day. It surely didn't hurt that I had an adorable little baby smiling up at me from her stroller....unable to speak but communicating with me none the less. For some reason, on this evening I began to feel very sad. I looked down at my stale hospital pizza with the cheese that had undoubtedly been melted hours earlier and I began to miss my home. I started to wish I wasn't alone....wish that my husband was sitting across the table and making me laugh...wish that Paysen was being a crazy boy...wishing, that the silence would disappear.
As I allowed these thoughts to take over my state of mind, I felt a gentle touch on my shoulder. I looked up to see the woman who had, hours earlier made eye contact with me through the glass fish bowl that is the ICU. She smiled and simply said, "We are going to be here for a while and I couldn't help but notice that you are alone, and that your hands are full....can I get you anything?" Of course I smiled and said no but felt relief from her kindness.
The next day she showed up at Parklen's room, holding a target sack filled to the top. She handed it to me and simply said, "I hope you don't think its weird, but I brought you a few things." I smiled and took the bag from her hands. Once alone in the room, I opened the bag. Inside I found many things....snacks, activities for the kids, a book, and a tiny notebook..... On the first page of the notebook I found a handwritten note...the note was simple..it included the woman's name and phone number and then just a little word of encouragement.... She asked me to start a gratitude journal....taking time, in the midst of my troubles to find things I can be thankful for. So I did. I began to write.....finding that it really isn't hard to find the good in a situation when you force yourself to look past the bad.
This woman, a stranger....showed kindness to someone she had never met. Went out of her way to spread God's grace. Wouldn't I love to be a woman like that? God uses people every day, in every one of our lives......I hope that you see these people....I hope that you allow them to change your day, change your perspective, change your life.
What are you grateful for?!?! Start a list and watch it grow. Today, I am grateful for a strong son that shows me what it means to be brave.....and how sometimes brave is also absolutely adorable.
Tuesday, August 20, 2013
There are probably close to a billion things I could complain about daily.....seriously.
But, in the same respect........I have about a billion things to be thankful for as well.
Don't you think that concentrating on the latter is a better choice. The bad will always be there in life.....but, if you look hard enough you will always see that the good is bigger!
If you don't know.....a few years ago we lost our home.....it was due to a compounding of events, but mostly because of outstanding medical bills for our babe. We used a little money we had saved to purchase a small mobile home to live in while Devan went to school and we rebuilt our financial situation. Almost as soon as we moved in, we outgrew the home.
Parklen's medical equipment takes up space.....a lot of space. Add that in with a college students books, two boys' toys.....and everything else for daily living and you get one crowded situation.... Then, along comes baby...... Mixing in another human and all of her stuff has been insane. As the baby came, Parklen required even more equipment.
You may or may not know that Devan works as a contract laborer. When he is not in school he can be found remodeling homes and helping to "flip" properties. He does most of his work for a friend of ours who owns a good number of properties and makes a living by investing in such properties.
Lets rewind time a little and look back about a year.......
Devan was working on a home, like usual, I went to check things out. I love to watch the transformation of these homes. They start out as something dirty and undesirable and end up new and beautiful. Right when I walked in the door I fell in love..... This home was already beautiful. On that very day I began to pray.......
I have prayed every single day for God to pave a way for us to have this home. I have known that the chances were slim. After all, we had no assets, no credit, no means of making a house payment while Devan was attending school....and still, I prayed. I had visions of space, plenty of room for equipment and still having space for the boys to be kids.....
A couple of weeks ago, while we were in Denver for appointments, Devan and I were talking about what will happen after transplant and all of the things Parklen's home will require. I said, "We really need to work on getting a house." Like he always does, Devan smiled at me and said, "yup, I know." Not even 5 seconds later his phone rang. I could hear his end of the conversation and instantly got butterflies in my stomach. After he was done speaking he handed me the phone.
"Hello?" It was our friend.....the one who Devan works for. "Hey Amanda, I was just calling to let you guys know that the house is yours." I just started to cry. He went on to explain that God had spoken to his heart and he was moved to help us out in a big way. It may seem like a trivial and materialistic thing to some, but having enough space and the ability to make a safe home for Parky and also a great home for our other children is so important to me. Its the reason why I have prayed every day for something that the world said was impossible.
So, we are packing up our things and heading across town, to a beautiful home. We are able to do a rent to own....and we are able to afford what is being required of us. We wont be paying more than we are now........
This home is an older home....it has tons of character. It also has a weak sewer. What will we do? A friend of our friend, who owns a plumbing company is donating his services....labor and time to repair it!
How do these things happen? Through faith. Through believing that God is bigger than what the world says is possible.
I hear a lot of people say, "We are praying for you and your family." There is no better gift than prayer. Genuine prayer. I would just challenge you to think about this......why pray for something if you arent going to believe that God will answer?!?! I believed every single day.....for over a year, that God would bring us a home....that he would provide safety and space for our special needs son...that Paysen would be able to enjoy his home and not have to walk on egg shells around his brother's equipment. I prayed it becasue I believed that God would answer. However that answer would have come.... I knew that, in His time, it would.
I believe, in the same way....that God will heal Parklen. I pray each day for this. Knowing that He answers in the best way and that I may not always understand that way. I know that his healing may come through medical treatments....I know that one day.....somehow, Parklen will wake up with no pain. What the answer to this prayer will look like is a mystery....but still I choose to believe.
So, as I hobble around on my hurt foot(a story for another time)....packing our things into boxes, I will say again.......We are blessed................................
Monday, August 19, 2013
|This is Paysen's view of his "super brother"|
Fast forward a couple years and those figured out things were shattered. I am living in the midst of a family that is not average....anything but.
Our schedule is dictated by oral medications, IV medications, treatments, and how a particular someone is feeling. I cringe at the thought of making plans, knowing that I will very likely have to cancel them.
When you think of a "normal" family, you may think of things like, bedtimes, meal times, discipline, activities......and so on.... Our family is quite different....bedtimes are changed according to medicines that are scheduled. Meal times are approximate and can change instantly, we all eat around the table......but usually one of us is too tired to stick it out through the whole meal. Discipline is hard because of drug side effects and emotional experiences. We have to pick and choose our battles and punishments, we generally choose to focus on things like manners and the way we treat other human beings rather than clean rooms and finished chores........it wasn't always this way. Activities are a disaster to plan, we have to adjust them according to the amount of people Parklen will be exposed to, fix them to cater his weakness and inability to last long..... So normal?? no.....anything but.
Most families may have a dad that goes off to work and comes home to rest....we have one that goes off to school, goes off to work and then goes off to study.....his schedule is nuts.....we adapt. We will drop everything possible to spend time with him when he is able....knowing that quality is so much more important that quantity.
Some families may frown upon sharing a bed........we soak up the evenings that come with tiny toes digging into backs, kicks, shoves and snoring.....we hang on the moments of our children snuggled in tightly to our king size bed.....we thank God for each given moment of closeness, realizing (possibly more than the average parents...) the very fragile nature that is this life....knowing all too well how quickly we can be torn apart from one another....remembering that each and every day (and sleepless night) is a gift. It isn't an every night occurrence but it is an every morning one. The five of us spend a while each and every morning smooshed into our bed, snuggled close. My favorite part of the day.....
I spend my days as a mother nursing an infant....dispensing meds, changing out IV drugs, managing a feeding tube, emptying ostomy bags, entertaining a 6 year old, preparing meals, loving my husband, laughing with my daughter.....playing with my sons......and most importantly, I spend my days being thankful....when I want to cry because it is all so hard, I try and choose gratitude instead. Who knows what tomorrow holds? God does. We aren't normal, we aren't even average.....we are really anything but..... and I am thankful for the opportunity to participate in the craziness that is our family.
God has blessed me with amazing people in my life....I have some friends that are far past amazing. A few special ladies are putting together a 5K fundraiser for Parklen and his upcoming transplant. If you know anything about our boy, you know that he loves super hero's.....that supports the theme of the 5K... its a super hero run!!! People are invited to come and support Parklen and sport their favorite super hero costume as well.....doesn't that sound amazing! You can find the information here, and if you live too far to participate you can find links for purchasing tshirts with a picture of "super Parky" drawn by his brother or links to just donate!