A few weeks back, Jake and I were discussing how wonderful this winter has been in regards to sickness. Malachi has managed to avoid all major illnesses! We spoke too soon as our area was hit this week with what seemed like an epidemic of flu, strep throat, and a nasty stomach bug.
In fact, it was so bad that the area schools closed down. Jake’s school closed from Tuesday through Friday! Our fear of catching any bugs kept us on lockdown most of the week, only going out for random errands or necessities. I cancelled all of Malachi’s medical appointments and therapies, except for his horseback lesson on Monday. Quite the quiet week for the Carrolls.
Thursday we got up early and embarked on a big adventure! Last week I mentioned a special story I wanted to share with you…
A few years ago a nurse in Ohio contacted me about a little boy named Karter. When Karter was still a baby, they discovered he had brain cancer. At nine months old he had a surgery to remove a tumor and he suffered three strokes during the surgery. His nurse at the time had seen a picture of Malachi in his horse bouncer and thought it might be something Karter would enjoy. We chatted a bit and she got me into contact with Karter’s mother, Roxanne. While our stories are very different, we shared a bond in loving an extra special superhero in our lives.
Karter fought so hard, and so did his family. My heart broke about six months ago when I read that Karter went to be with Jesus. It is such a mix of emotions because my heart was overjoyed for Karter to be free from pain and to be in paradise, but my heart also ached for his mom, dad, and older sister who had to deal with so much emotional turmoil.
There is a second part of this story worth noting as well…This past November I was contacted by a family in Ohio who had also lost a nephew shortly after his birth. This family said that every year since his passing they gave financial gift to a family in honor of baby Samuel. We were so honored to be the recipients of Samuel’s gift, and I promised her that it would be used for something special for Malachi.
So now time to connect all these dots…
Three weeks ago, Karter’s mother started to post his medical equipment on a few Facebook sites. As I saw these posts, my heart beamed with admiration for her, as this step must not have been an easy one. I clicked on one of the listings, which happened to be a medical stroller. As I looked at the photo and read the specs I couldn’t help but get excited…it just seemed perfect for Malachi. I started doing some research on the stroller and the more I read the more I realized that this would be a wonderful secondary wheelchair for Malachi. It is built for more rugged terrains, which we find ourselves dealing with more often in our rural county.
Insurance is a tricky thing with a medically complex child. They are very strict on what they will help pay for, and it is standard for them to only pay for one wheelchair every three to five years. We debated about ordering him a wheelchair stroller but decided against it and ordered a standard wheelchair. There is a secondary market for wheelchair strollers so I just figured when the time was right we would start looking for a used one.
The price alone for Karter’s wheelchair is worth noting…$500… the exact amount that had been given to us in honor of baby Samuel. And this particular stroller costs $6,000 new, so Karter’s mom was being very generous.I contacted her and we coordinated to purchase the stroller. My dad was able to meet up with her in Ohio and just so happened to be traveling to Gatlinburg this past week. So on Thursday morning we met him in Knoxville and picked up Karter’s wheelchair stroller for Malachi.
I was so eager to get Malachi in it and fitted, so the second we got home we plopped him in. It was an almost PERFECT fit. And Malachi absolutely loves it. It has the option to face towards the driver or out like a regular stroller, and he was so tickled that he could see our faces and be wheeled around. He giggled and giggled when we pushed him fast down the hallway.
Malachi is one crafty little stinker and figured out that he could fling his head awfully far to the side in his new chair. We always have to order the most supportive headrest offered, and this was no exception. If we were to order the new headrest, it would cost $270, which is absolutely ridiculous. So Jake and I went to the local hardware store and got creative. We were able to use conduit and fashion supports on either side of the head rest. Then I used my very limited sewing skills to modify a neck rest to create a cover that would be soft to lean on.
I sent photos of Malachi in his new ride to Karter’s mother. This was her reply:
“I’m just overjoyed. I can’t help but wish that was Karter giving us that big smile in his stroller but seeing Malachi in it makes my heart smile I’m so glad.”
It is simply amazing to me how three strong and amazing little boys…children who have faced things with bravery that no one should have to face…are touching so many lives. So in honor of baby Samuel and Superman Karter, we thank you for bringing such a beneficial piece of equipment into our home.
One more interesting fact for you…special needs mommas with multiple children have been trying to find ways to safely attach baby seats to wheelchairs. Easier said than done, but THIS EXACT stroller is one that they have successfully modified and put a step by step guide online with instructions. So when Jake and I decide to expand our family, I will be able to push both children using this one stroller. Amazingly comforting for me to think about, as the idea of having a Malachi and a baby is completely overwhelming sometimes.
There is an online organization called I Run For Michael in which runners are paired with a child with disabilities (called “buddies”). Here is a statement from their website:
I Run 4 Michael is a non-profit organization founded in January 2013 by Tim Boyle, who was inspired to run for more than health and weight-loss by a viral meme saying, “I run because I can. When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them.” When Tim shared the meme, Michael, a 50-something man with Down Syndrome, replied, “You can run for me any time!”
Launched as a private group of 10 runners and buddies with special needs (20 total) who shared workouts and health updates in a private setting, IR4 rapidly grew to over 22,000 members and nearly 7,000 matches, with 3,500 athletes waiting, within 18 months.
There are lots of runners on the current waiting list, and a severe need for buddies. A few months ago I decided to sign Malachi up and we were paired with a wonderful runner named Ashley. We are close to the same age, and she has two beautiful daughters of her own. She has been consistently running for Malachi and her personal goal this year is to run 500 miles for Malachi.
Runners aren’t required to send gifts, but rather it is meant to foster new friendships. Ashley being the sweet runner that she is sent Malachi a package for his birthday with lots of stuffed toys and even a medal from her last race!
She knows him well, as she sent him this badger stuffed animal that makes a toot noise! He loves it!!
So I guess we can sum up this week as one filled with tender moments and generosity from others. It never ceases to amaze me when I look at all the wonderful people God has brought into our lives because of our sweet Malachi. We live a complicated and stressful life, and having support from family, friends, and even strangers helps keep us going.
I am having a hard time this evening clearing my mind and coming up with a devotional thought to share. It isn’t that I am drawing a blank, but rather I am overwhelmed with thought bubbles, all going different directions. So here is a final thought for tonight’s entry-
Are you allowing God to help you triumph over tragedy? Are you able to take the darkest moments of your life and turn them into the light on a hill that God calls us to be? Tragedy can take us to our knees and leave us gasping for breath. Sadness can allow darkness in, and that darkness can be hard to shake. But with the power of Christ we can rise from the ashes and turn our mourning into dancing.
Our lives have been touched this week by others who have successfully done just that. And the example it has set for Jake and I is a wonderful reminder that the love of God shines through even the darkest moments….you just have to shift your focus from the shadows to the light find it.
Jake, Leah, and Malachi