It’s incredible to think that four months ago, Dr Sturm inserted two titanium rods across a segment of Cole’s spinal deformity. His little body was too small for magnetic rods which would have meant a much easier, less invasive lengthening process. Par for the course, Cole did things his way and I’m adapting to his way because no matter what it is, he continues to persevere. During the initial recovery, Cole was very hesitant to move and wanted his brace on every second of every day. I remember how hard it was to simply take the brace off for a sponge bath or when we had to do the first dressing change, the worst! I wanted to bawl my eyes out with every tear that streamed down his face. I knew the pain and anticipation was unbearable for my little guy and I would’ve done anything to take that pain away from him. However, those are distant memories and we are past those difficult stages of healing. There’s so much that Cole is doing post surgery that he was not doing prior. It’s always a challenge to truly know what, exactly, is a result from the surgery and what he’s doing simply because he’s getting older and stronger. As humans we’re prone to the fallacy of false cause, thinking that an event that follows another was caused by it. As a Mom of a medically fragile wonderful boy my job is to celebrate each milestone, encourage more, and try as hard as possible to determine cause and effect in order to make the right decisions.
Once Cole was completely healed and no longer in pain, I noticed some subtle improvements such as less looking straight up as he would walk. Little by little I noticed more and more improvements. Such as walking up the stairs better, walking with more balance, walking for longer periods with more stamina, climbing on items, and actually running. There have been a handful of firsts for him. Walking up two steps without using hands or assistance from someone else. The first time he did this I was so amazed and I’ll never forget the moment. I heard Lexi sternly talking to Cole and telling him, “no hands come on try again you got this!” I went over to them and there Cole was walking up the stairs with no hands. It was certainly not an easy task and he still prefers to use his hands on the wall or rail, but the point is… He can do it! It’s funny, but I was getting a ton of messages and likes on Facebook about my story I had posted. The real funny part is, I had never posted a story and didn’t even know how to post a story. I figured out what the story was and it was a video of Lexi sternly telling Cole “no hands” and him walking up the stairs. Lexi had captured it all and unbeknownst to me, Cole had posted it. Since then he has posted several stories and we’ve had serious discussions about him not posting videos, he can’t be trusted on social media… Just yet! We took a family trip to Florida (yes during Covid) and stayed at a resort where we felt like the only family there, it was awesome. Anyway, for the first time ever we didn’t bring a wagon or a stroller and Cole walked the entire time. Now anyone who knows Mark or myself, know that we are very fast walkers and Lexi has taken on that trait as well. This trip we all walked substantially slower, but the point is WE ALL walked! It was such an amazing feeling and Mark and I consider it an incredible milestone. After a few days of this new normal for us, Mark and I brought up all the accomplishments Cole has achieved and how much easier he is to take care of. Who would’ve ever thought a family that had a son with so many complications would be thinking he was getting easier to take care of. One word sums it up… Perspective. We remember when we first learned trach care in the hospital, we remember when we brought him home on a ventilator, oxygen, and all the other medical equipment. Cole’s first trip to Mexico and several trips to Florida we had to bring an extra large suitcase just for all of his medical supplies. He is now only ventilated at night, oxygen when sick, and we are able to pack in 20min for Cole versus hours. During summer we (meaning Mark) installed a rope swing with a disk seat in our basement. Cole was never able to swing on this unassisted and now he does it daily. The smile on his face due to his accomplishment never gets old.
I saved the best story for last. Last Sunday Mark left to go to Menards and as he left he said text me if you need anything. No later than 20min I heard a huge bang in the hallway. I ran to see what happened and I immediately noticed a hole in the wall. Cole had managed to get up so quickly and he had the closet open as if he was looking for something. He refused to turn around and as soon as he did, he began signing Lexi made a hole in the wall. His forehead matched the hole in the wall and I explained that I’m worried about him being hurt and I don’t care about the wall, Daddy can fix it. Sure enough I texted Mark a picture of the wall and Cole’s head and said, yes we need something to fix the wall. The best part of this story (apart from hitting drywall and not a stud) is the fact that he was running. Prior to surgery, I can honestly say I never saw him really run. Once Cole realized that he was not in trouble for putting a hole in the wall and his story about Lexi was impossible since she was sound asleep, he told the truth… Kind of. He said he was running as fast as a cheetah and he fell, he also said it was very funny. It’s ironic that we would ever celebrate a hole in the wall from your child’s head, but it’s much deeper than that. Our little hero who had all odds stacked against him is running down the halls like a typical six year old. We had our televist appointment with the spine surgeon and due to a protruding part of Cole’s back it looks like they will have to open him up a little more to see if it’s loose hardware. Our next step is his first lengthening in February. I’m dreading that conversation, knowing Cole’s hatred for going to the hospital.
We took the kiddos to Lake Delavan in wisconsin and they enjoyed swimming, running around, and playing. This trip was from Friday through Sunday, knowing that Sunday January 31st we had to head to Cincinnati. Well, here it is Sunday evening 1/31. We got home to 6-8 inches of snow. We shoveled, cleaned, unpacked, and repacked to head to Cincy. Mark and I have had numerous discussions about talking to Cole prior to Doctor appointments and we’ve come to an agreement that he needs to know, but not too early. We told him this morning when we woke up at the hotel. He asked if he could play with his friends, go home and play with Grandma and Grandpa first. That what an easy compromise so that’s exactly what we did. This evening when we were ready to head out the door, that’s when it really kicked in for Cole. He said goodbye to Grandma, Grandpa, and Lexi, but then immediately walked up to me and signed I’m all done with the Doctor. I could tell he was seriously fighting back the tears and I was so close to losing it. Honestly, it breaks my heart and it only gets harder as he gets smarter, more aware, and more upset. I asked him for a hug and he wouldn’t give me one. He took his shoes off four separate times because he just didn’t want to go. Finally, I got him to walk out the door and as soon as his face was turned away from Grabdma and Grandpa, he started bawling. Lexi ran to him and handed him his stuffed Jake (from Jake and The Neverland Pirates) which he loves and always travels with. He said no because he was so upset. Lexi knew he was sad and gave him the biggest hug and said she loves him so much.
We finally made it in the car, Mark had to carry Cole because he wouldn’t walk. We get in the car and all teary eyed Cole signed he wanted Jake. Mark ran inside and got Jake. Still very sad, I put Cole on my lap told him he was the strongest boy I know, kissed him and told him I loved him so very much. He was frustrated, sad, and mad so he wouldn’t even kiss me back like he always does. It’s times like this I feel so helpless and I have a little pity party for myself. I think it’s important to break down, I think it’s important to let it out, and I think it’s healthy as long as I dont stay in this funk for too long and I wait for the right timing. The truth is, Cole has had the most difficult life full of hospital stays, surgeries, doctor appointments, complications, and there is no end in sight. It’s not fair that I tried so hard to eat right, work out, and be as healthy as I could while growing a human inside me and he was born barely alive, fighting for his life, with so many medical complications. It’s not fair that six years later he can’t talk, he requires an artificial airway, he can’t eat orally, he’s deaf, he has limitations in his motions, he has scoliosis, he only has one kidney that functions 30%, he can’t jump, run, and walk like the other kids do. It’s not fair that water is so dangerous due to his trach that he can’t learn to swim independently and go in the pool like all the other kids without his parents or with just a floating device. It’s not fair that we can’t even go in public, ever, without having a ton of people stare at him because he looks different and most people have never seen a trach before. It’s not fair that strangers don’t see what I see. I see the most admirable, strongest, and inspirational little guy in the whole wide world. I see a six year old that has gone through more in his short life than any other person I’ve ever met. I see a little boy that has persevered and overcome obstacles that Doctors didn’t know was possible. Most importantly, I see a boy with the most amazing personality, sense of humor, and smile. I see a boy that is social and wants to communicate with everyone, regardless of your age, what you look like, or whether you know ASL or not. I see a boy that is compassionate and curious for others, especially, who have medical needs, wheel chair, crutches, glasses, etc.
Tomorrow morning we are the first surgery so we have to be at the hospital at 5:30AM for a surgery start time at 7:00AM. We left our house at 5:30PM so we will lose an hour when we get to the hotel at 11:30PM. We will get a handful of hours of sleep and off to the hospital. Fingers crossed that everything looks good and they only have to lengthen the rods.