Wheelchair Love

Sometimes I forget that Finn is different. He does everything three year olds do. Just most of those things he does sitting between two wheels.

IMG_1871

Every now and then I’m surprised when others react to him.

Like last week I came to pick Finn up from school and four tiny girls crowded he and I at the door. They asked a million innocent questions, from “Why is he in that wheelchair?” to “How does he sit in the car?” to “Why does he still wear diapers?” Kennedy even told me that she used to have a pink wheelchair when she was a baby. I think she was confused. 🙂

After I had fielded the questions as best as I could and we were trying to squeeze through the door, Finn asked if he could give one little girl a hug. She was standing in front of him staring. She said, “No, he can’t give hugs. He’s in a wheelchair.” My stomach dropped and so did Finn’s countenance. “He’s great at giving hugs,” I said.  “Watch!” We hugged and I pulled her in too. Finn zoomed away unfazed, but I was reminded that three year olds don’t typically roll. He’s different.

Our LifeKids volunteers at church are incredible. Saints. One woman in particular told us a story about Finn from Family Reunion.

Our pastors told this story from stage this weekend.

Our pastors told this story from stage this weekend.

She wasn’t too thrilled to be serving that day, if she was being honest. She reluctantly entered the three year old classroom where she thought she’d simply keep the peace and wipe snotty noses. I’m sure she did plenty of that, but she was also blessed by the attitude of our little man. She said he was joyful, interactive with the other kids, and at one point he made her day:

“Can I tell you a secret?” Finn whispered in her ear, “Jesus loves me…and my wheelchair.”

I love this because Finn recognizes–better than I do–that God loves the things that make us different. No, I do not believe God delights in the fact that Finn is disabled. But I believe God delights in Finn despite his disability. And maybe even more so because of it. He wheels through crowds like he owns the place, unaware of (or indifferent toward) the staring and pointing that is so natural.

IMG_1867

I know a day will come when Finn’s confidence will be shaken, but I’ll revel in his courage and self-assuredness until then.

IMG_1903

Do you love the things about you that make you different?

Advertisements

St. Francis Children’s Hospital, Room B2

Finn whispered, “Will you guys pray for me?” Joey, his mom and I started crying. Then we prayed over his sweaty little body; cheeks red and flushed, eyes closed.

IMG_1596

We called his nurse in for some Motrin and about 30 minutes later, he snapped out of it. The South Tulsa LifeKids team was visiting when Finn seemed to come back to life.

Stephen and Finn

Stephen and Finn

He was calling us “Poopy,” giggling and asking his nurse about the Avengers on her scrubs.

IMG_8258

Sunday evening, Finn refused dinner, said his head hurt and asked to take a nap at 5:00pm. Something was not right. We got him home from a family run at Turkey Mountain, where the kids had performed their first “rock climbing,” and Finn had a 102.9 fever–the highest we’d ever seen with him.

IMG_8236 IMG_8242 IMG_8244

After medication, we checked on him every 15 minutes and his temp was dropping, so we let him sleep through the night. He woke up Monday morning happy and ready to go to school.

School called around 3:00pm saying he woke up from his nap, said his head hurt and threw up. I picked him up and Joey and Paisley met us at the pediatrician. We were hoping it was the return of an ear infection he had a month ago. Nope; ears looked perfect. Our doctor said to take him to the ER…although it’s very rare, it could be a possible shunt infection.

Finn has a VP shunt behind his right ear. It’s a small device that regulates the spinal fluid pressure in his brain, caused (in his case) by Spina Bifida. It keeps him alive and was placed by a neurosurgeon three days after his birth. When it malfunctions, the shunt’s catheter gets clogged and CSF (cerebral spinal fluid) accumulates in his brain, causing him to feel very sick. Most often, it requires immediate surgery to fix. This has happened twice, but not since 2012.

VPSHUNT.60234908_std

We spent about 6 wearisome hours in the ER at St. Francis.

IMG_8252

Joey’s parents helped with Paisley, friends brought us dinner, and Joey’s boss and his wife visited the hospital then took over for my mother-in-law staying at our house with Paisley.

IMG_1584

They ran every test–blood, urine, swab for infection, strep, CT scan, and a shunt x-ray series. Everything came back negative for infection and the shunt seemed to be working properly; nothing was kinked or clogged. His inflammatory indicator was high, but white blood cell count was normal. We were baffled. They decided to admit him overnight to continue investigation.

IMG_1586 2

They gave him the same antibiotics as they would if he had spinal meningitis, not wanting to leave anything up to chance in case he had a shunt infection. Finn and I spent Monday night in the hospital, where they came in every hour for some test or IV check. Every 3 hours they pried his eyes open and shined a light in them. Fever was still pretty high. By mid-morning he was basically unresponsive for about 3 hours.

IMG_1591 IMG_1599 2

We’d ask him to look at us and he wouldn’t turn his head; even when his eyes were open. We were scared and praying hard. This is when he asked us, “Will you guys pray for me?”

Tulsa recently got a new pediatric neurosurgeon, and she was on Finn’s case. She ordered a shunt tap–they stick a needle into the shunt and extract CSF to test it for infection. If it is infected, they will remove the shunt and replace a new one–a major surgery and two-six week hospital stay. The shunt tap was ordered at 10:00am, but no one heard from Neuro until 8:00pm that evening. By that time, Finn had rallied and was feeling so much better that we were playing catch with a foam baseball when she arrived at his room.

Daddy made a tent!

Daddy made a tent!

Cousin Ev, Tuck and Sully sent balloons!

Cousin Ev, Tuck and Sully sent balloons!

Gym friends brought a Miles of Tomorrowland toy!

Gym friends brought a Miles of Tomorrowland toy!

She decided not to risk the shunt tap since he was obviously feeling better.

He woke up Wednesday feeling great and even ate a donut!

He woke up Wednesday feeling great and even ate a donut!

We left the hospital around 6:30pm on Wednesday, still unsure of the source of infection but thankful for Finn’s improved health nonetheless. Perhaps it was a weird virus? God, no doubt, had healed him.

Our miracle boy.

Our miracle boy.

Thank you so very much for your prayers and encouragement during this difficult week for our family. We are blessed by the community you provide us. You are, quite literally, the “hands and feet of Christ” in our lives. Keep praying for Finn: that he would not relapse and that his shunt would continue to work properly.

Endeavor Games 2015

This weekend Finn competed in his first ever Endeavor Games. We weren’t quite sure how he’d enjoy it, so we didn’t really invite anyone to attend. It’s a qualifying event for the 2016 Paralympics, so people take it very seriously–there’s a starting gun and sanctioned rules and everything.

IMG_1012

We thought Finn might even hear the gun, have a meltdown and wheel off the track; but he surprised us and had a lot of fun.

He came in dead last in the 20m dash…it was so cute.

IMG_1101

He heard the pop, wheeled a little, stopped to look around, wheeled a little faster once he saw Paisley and I at the end of the track, then stopped about 2 feet from the finish line to take it all in. Keep going, buddy!

IMG_1029

I'm a track star...no big deal. ;)

I’m a track star…no big deal. 😉

He also enjoyed reconnecting with Ryder, our buddy from OKC.

IMG_1011

Helmet bump

Helmet bump

These athletes are unreal. Many were in wheelchairs and others of them had limb differences; a few were even double or triple amputees.

FullSizeRender 12

I had to turn and face the other direction several times to hide my tears as I watched these people defy all odds, pushing their bodies beyond their God-given potential. Goosebumps everywhere.

FullSizeRender 10

IMG_1105

What excuse do you and I have not to move?

Finn was more comfortable in the 60m dash and he didn’t even finish last!

IMG_1044 IMG_1050

I’m pretty certain he was technically disqualified because he went from the farthest lane to the nearest lane, diagonally across the track. It’s hard for a 3 year old to stay in the lines!

He won two medals anyway. 🙂

Ugh. He's the cutest.

Ugh. He’s the cutest.

We also had our annual roommate reunion this weekend, so Jane and the Whites came to cheer Finn on.

Missing our Al at dinner!

Missing our Al at dinner!

He was so happy to see them all at the finish line. “You came to visit me?!” he beamed.

IMG_1053

Finn loves Navy.

IMG_1072 IMG_1066

Later in the day, Finn attempted the shot put. He didn’t like how they strapped down his wheelchair. It also didn’t help that there were 20 volunteers standing around watching him. The official was an older, shall I say, gruff woman.

IMG_1088 IMG_1085

She was a stickler for the rules and would yell “Foul!” when Finn didn’t throw the ball the right way. He cried and asked if he could race instead. Obviously he wasn’t having fun anymore, so we decided to skip the javelin and discus and drove home to Tulsa early. Maybe we’ll try the sitting implements again next year.

IMG_1090

Paisley loved clapping for big brother!

IMG_1076

It was a blessing to see Finn so proud of himself, and it was good for Joey and I to be reminded we are not alone in the world of disabilities. There are many other families out there like us, and many other angels like Finn.

FullSizeRender 11

A Ramp for Finn

Five of my favorite men + 2 pots of strong coffee + 3 loads of lumber + the inspiration of one little boy = a beautiful deck and ramp finished in less than 6 hours!

IMG_0813 IMG_0817FullSizeRender 9IMG_0834

We couldn’t have done this without our families. I love having them near. It’s the best part of living in Tulsa. Everyone is just a few hours drive (or less) away.

IMG_0819

The Cousins! (Minus Tucker)

IMG_0798

“Uncle Chad is my best friend.”

IMG_0806

The boys collaborated on a DIY project that will make our home more accessible for Finn. He watched the big boys build from inside, asking, “They are making that for me? So I can wheel?” Yes, love.

IMG_0827 IMG_0831

The forecast of course promised rain, but God literally held it off until the minute we stood back and admired the finished product. I envisioned Him holding a yellow polka-dotted cosmic umbrella over our home for Finn. All for Finn.

IMG_0838

He is one deeply loved and richly blessed little boy. Sure, he’s as naughty as any 3 year old, but there’s just something special about him. I like to think God gave him an extra dose of sugar, perceptiveness, and confidence.

Thank you, Terry, Dad, Chad, Tyler and Joey! We are grateful.

Things That Aren’t

Finn’s so smart. I know, I know…your kid is smart too. But Finn is really smart. 😉 His brain is most impressive because we were told in the NICU that he may not ever be able to communicate with us. He would be severely mentally handicapped.

Not this kid! He’s truly a miracle. We can read a library book to him once or twice and he will recite it the third time. His mind is a steel trap. He reminds you that two days ago you said he could go to church and that he could have chocolate milk at Starbucks. He knows all 43 of his trains by name.

With Daddy at Easter!

With Daddy at Easter!

But he’s also emotionally intelligent. If my brow is furrowed while I’m strapping him into his carseat, he’ll ask, “Why are you frustrated, Momma?”

Landscaping problems...

Landscaping problems…

We recently read a library book called “Some Kids Use Wheelchairs.” I was hesitant to read Finn this book, worried that a conversation about his disability might ensue. I’m not sure I’m ready for that discussion emotionally. Anyhow, the first few pages discuss why some kids are in wheelchairs.

$_12

Some kids use wheelchairs because their legs are weak or they had an accident. They can’t walk.

I sheepishly asked Finn if he could walk. “Yes I can.” Oh? Can you stand up? “Yes.” So why do you use a wheelchair? No response. He turned the page…

We read this book many more times before returning it to the Book Drop. Each time, Finn was adamant: he can walk.

Whether this is a display of faith or ignorance really doesn’t matter. I count it a blessing that Finn is confident and relatively unaware that he’s not like everyone else. I wouldn’t be surprised if he thought we were the weird ones…walking around on two feet and whatnot.

IMG_0476

“So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal” (2 Cor. 4:18).

In Finn’s mind, he is able to do anything. I believe this is a result of prayer, God’s lavish grace, and decent parenting. God gives life to things that aren’t alive. He redeems the broken. Makes the sick well. He bestows honor and power and courage on a child in a wheelchair. I’m so thankful to be Finn’s momma. I can’t hardly wait to see all God continues to do in his little, important life.

We Prayed for You

Teachers, we prayed for you tonight. We prayed that you would equip Finn with challenging thoughts and more questions than answers. Teach him that his mind is powerful. Help him find what he’s good at and excel at it. We prayed that you would make accommodations for him but not isolate him. Empower him, please.

LifeKids volunteers, we prayed for you tonight. We prayed you would engage Finn in meaningful play; that you would encourage him to join the kids in the bounce house or at the tiny tables, even though it is difficult and unnatural. We prayed that you would show him who Jesus is: that He’s good and kind.

Kids, we prayed for you tonight. We prayed that one or two of you would be kind, inclusive and accepting of Finn and the ways he’s different. We prayed you’d be brave enough to stick up for him, make a place for him at the lunch table, pass him the ball and hold the door. Be his friend.

IMG_0352 2

Girls, we prayed for you tonight. Take care of your body. Then cover it up. Let your inner beauty shine brighter than your outer beauty. We prayed that one of you might fall in love with the boy in the wheelchair. You’d love his humor, his hazel eyes, and his tenacity. He would be your hero and you’d be his.

Doctors and nurses, we prayed for you tonight. That you’d sleep well and be clear-minded to keep Finn and other kids like him healthy and strong. That you’d know what to do in emergencies and save his life if you have to. Be patient with us parents…we’re sensitive.

Thankful for a great neurology appointment this week.

Thankful for a great neurology appointment this week.

Jesus, I prayed to you tonight. My boy isn’t like other boys. Most of the time I love that; I’m thankful for that. But for a minute tonight, I hated it. Sometimes I’m strong, but today the kids pointing at Finn and the stares and the exclusion made me weak. Please help me be the best mom to him (and Paisley) that I can. Thank you for my angel and the miracles you’ve displayed in his life. Thank you for all you will do with his future.

A Story of a Three Year Old

“Tell me a story, Momma.”

There once was a boy named Finn. He was the fastest little boy on wheels. He had the happiest smile and the sweetest voice. He loved his sister, Paisley, even though she took his trains. Chicken nuggets and chocolate milk and puzzles were his favorites.

When he was born, his spine was hurt and it made his legs weak and his brain swell.

IMG_0630

So he stayed in the hospital for 14 days.

IMG_0657

His family and friends prayed a lot.

20120301-123507.jpg

DSC_0286

Finn was a brave little boy. He had 8 surgeries before his first birthday.

IMG_1607
photo-151 20121117-221441.jpg

photo-3

He learned to use a wheelchair to zoom around the house.

So proud.

photo-2

He was not like other kids, but that’s okay; he was unique. God made him so smart. So important. So special.

On Finn’s third birthday, he went with his family in their jammies to get coffee and donuts.

IMG_0207

IMG_0190

He ate a chocolate silly face donut.

IMG_0193 IMG_0201

Then he went on a scavenger hunt for his birthday gifts.

IMG_0240 IMG_0241

He was very lucky: he got a mini iPad from both his Nana’s and Papa’s a couple weekends ago at the Rosells’ house in Arkansas.

IMG_7163 IMG_7164

Gigi made him a birthday coffee cake and Poppy made a fishing game for Finn to play.

IMG_0148 IMG_7166

On his birthday, Finn found a dinosaur puzzle, a sticker book, some cool jeans and sunglasses, and Batman walkie talkies hidden around the house.

After breakfast, he went with his family to the Oklahoma Aquarium.

IMG_0235

He loved the otter. It was cute and did flips in the water.

IMG_0234

He saw fish and alligators and turtles.

IMG_0228 IMG_0242 IMG_0251

His sister, Paisley, was amazed by all the sights and sounds.

IMG_0247

Finn’s favorite was the shark tank. He was hesitant at first, but he decided to be brave and zoom through the tunnel with sharks swimming all around him in the blue water.

IMG_0244

He went back and forth through the shark tank, up and down the ramp. His arms were so strong.

IMG_0250 IMG_0245

Other kids at the aquarium thought Finn was cool whooshing around in his wheelchair. He cried when it was time to leave.

After a nap, Finn and his family went to Nana and Papa Armstrong’s house for a birthday dinner. Nana helped Finn and Paisley decorate a box to play in.

IMG_0261

We sang “Happy Birthday” and ate Ludger’s cake.

IMG_7262

It was delicious, but Finn’s tummy got upset. He didn’t normally eat that much sugar.

After reading a bedtime story, Finn fell asleep on his Thomas the Tank Engine pillow and dreamed about his happiest third birthday. The End.