John Wyatt’s Family
John Wyatt Smith was born to what doctors told us was “normal” (for the most part). He was a beautiful small baby at birth and had some complications that required a 2-day NICU stay, but other than that we were thrilled to take our sweet little boy home with us. Two weeks later he began to cry, a lot. It was most of the day and most of the night. The pediatrician blamed it on colic and reflux, so we just chalked it up as that. But when 3 months hit and the crying didn’t stop, something in my heart felt like there was a problem far greater than colic or reflux. His left eye began to swell and within a week it was almost bulging out of his head and was so large it caused me immediate concern. After a few Doctor visits and tests, we found out on December 31st, 2018 he had a rare childhood cancer called retinoblastoma. His retina had completely detached, and we discovered he had tumors in both his eyes. The tumor in the left eye was so severe it left him blind in that eye and almost blind in the other because it was covering his line of vision. We were quickly sent to St Jude in January of 2019 where the specialists agreed the left eye needed to be removed immediately to prevent spread of cancer to the rest of his body. He received 6 rounds of systemic chemotherapy, laser treatment, cryo therapy, and even direct shots of chemo to his right eye. He is a literal walking miracle. He should not have good vision in his right eye, but he has 20/20. We truly give God all the glory and thank all the doctors and nurses of St Jude. While he was in treatment his oncologist noticed he wasn’t reaching his typical baby milestones. John Wyatt was 3 months old when we found the cancer and 4 months when he started chemo. They give grace to children because it’s a lot for a child to endure harsh medicine, but John Wyatt wasn’t meeting hardly anything. This prompted us to be seen by a genetics counselor a few months later to find out he has a rare genetic disorder called 13Q deletion. He is missing part of his 13th chromosome which they believe is what caused his cancer. It almost always causes developmental delays. His body is also missing the gene that fights cancer which is called the RB1 Gene. My husband, Brady and I have zero history of cancer or any type of genetic disorder on either side. It came quite a shock because we were so stunned to find out OUR child has this. I feel like the parents go through the 5 stages of grief constantly when you get this type of news. You’re in such disbelief this could happen to you, and then it does. We felt as though we failed him. It still hits us hard some days. However, we knew he needed help because the faster he gets help the better he has a chance at living the most independent life that he can! The sad thing about 13Q deletion kids is there are hardly any studies or tests done on them. Very few doctors even know about it because it is so rare. So, when we were given that diagnosis the doctor just shrugged her shoulders and said, “only time and John Wyatt will tell us the kind of life he will live.” As a parent that is so hard to hear. I feel like when you get a specific diagnosis either at birth or shortly after you kind of have this idea of what life will look like. But us, it was and still is a guessing game. There is no cure, but there is therapy… exact words of his doctors. I can’t tell you how many times I’ve had to explain what 13Q deletion is to medical professionals. With that being said he is considered to have a global delay in all aspects. We didn’t know when he would walk, crawl, or even talk. He didn’t sit up on his own until he was over a year old, he didn’t walk until a week shy of 2, and he’s 3 1/2 years old (almost 4)and cannot speak in full sentences yet. He has come a long way in every area of his day to day but he has a very long way to go. Our every day life looks similar to some but very different to most. Because John Wyatt only has one eye that puts a little more challenges his way. He does not have depth perception and we were told he never will. He will just adapt and he slowly is. Learning to step down and up stairs is still difficult for him, trusting himself that he can step off and not get hurt makes him nervous but he always tries! He is a very clumsy child and has to wear protective glasses at all times to protect his remaining eye! Even with all of his challenges John Wyatt is truly the happiest and most joyful child I’ve ever met (I may be biased because I’m his mom). He gives love so easily and makes sure you know you are loved. His favorite thing to do is meet someone new. He loves saying “HI!!” to just about anyone whenever we go. Despite every single thing he has been through in the short 3 years of his life he truly is full of joy. We call him our sunshine child because he radiates. He loves music. It has calmed him down in more than one situation whether it be a hospital room, a car ride, or even just an overwhelming moment, he thrives when he hears music. Especially Disney. Disney was there for us in the thick of those hospital stays at St Jude. His favorite movie when we were there and even after was coco. He loved seeing the vibrant colors and hearing the beautiful music. If it makes a noise, he will dance to it! He may not be able to communicate totally YET, but music makes us feel like we all can connect on his level.
We wouldn’t change a thing about John Wyatt. We love everything about his little growing personality and get so excited when we see he has learned something new or grasp a new skill. Having a child with special needs makes you appreciate life in such a way only parents that have one can understand. I still get jealous of parents with typically developing kids, don’t get me wrong, but there’s something about watching things comes slower for our son. We get to enjoy him in a phase a little longer than most. And it’s as if time sort of slows down. I try to look at his development has a marathon and not a race. He will get there when he’s ready, but it doesn’t mean it isn’t lonely. More times than not I find myself isolating us simply out of fear. Fear of what other moms or kids might think, fear of him getting left out, and made fun of. It’s hard to take him anywhere without having to explain his life story, and while I know it’s a testimony that doesn’t make it any easier to share sometimes. You just wish someone could relate to you and give you hope. That’s why I’m thankful for this community you guys have given us. I hope it connects us in ways that I can allow myself to not be afraid to get out more. Show other families and children that we can include everyone no matter what that child looks like or how advance or behind they are. Thank you again for this opportunity to share our son’s life and his story with the community!
Gift: Trip to Disney
Location: Floyd County
Given: August 2022