- Posted June 17, 2014 by
This iReport is part of an assignment:
Raising a special needs child
My husband and I have been blessed with 4 amazing kids, 3 boys and 1 girl. Our first challenge presented itself when our second child was just weeks old, in the form of a birth defect called Craniosynostosis, which is a premature fusing of one or more sutures in the skull. It occurs in about 1 of every 2000 births and is considered "rare". Left untreated it can cause pressure in the brain. He underwent an 8 hour surgery called a "cranial vault reconstruction" at just 11 months old. It was in the PICU afterwards that I had my first revelation as a parent. What we were dealing with, was nothing compared to what some other kids were fighting. I said for several years afterwards that if that was the worst thing we had to deal with, I'd consider us blessed. Unfortunately, the worst was yet to come.
Both our oldest boys have been diagnosed as PDD-NOS on the Autism spectrum. Raising a child with autism can be challenging and frustrating. Dealing with behaviors, IEP's, therapies, it can all be overwhelming. But there are also moments of great joy. Our oldest, Jasten, is brilliant. He has memorized maps and roads, loves reading and running cross country. He is very high functioning, mostly lacking in social skills. To outsiders he appears to be just a quirky kid. Our 6 year old, who had the Cranio, is a bit of a different story. He has had delays in speech, fine and gross motor skills. He is easily distracted and has seemingly no awareness of his own safety. I am constantly fearful of him running off into the street or falling of something. But he is absolutely the happiest person alive. I tell him all the time that I wish I could see the world through his eyes. Everything is amazing and exciting "look mom! It's cans!" (We were at the grocery store). Autism has taught me to be patient and to accept help. There are people who can help you cope with this diagnosis and you must be willing to listen and must be prepared to work hard, but it can be done. Daily life can be crazy, but fulfilling and at the end of the day, my boys are healthy and here with us. We would not be so lucky with our youngest child.
Dexton was born in October of 2012 and was a seemingly healthy, happy baby. On December 5th, 2013 our world was shattered by a terrifying diagnosis. We had noticed that shortly after his first birthday that Dex began regressing in his motor skills. He had been close to walking, was pulling up and scooting along furniture. Seemingly suddenly, he started falling over all the time and spent most of the day sleeping. After several phone calls and a trip to our doctor, he was admitted to the hospital for an MRI. The next day we were told our sweet baby boy had a massive brain tumor. I can't describe what it's like to be given this news, I won't even try. Complete and utter devastation. The next few days were a whirlwind of information and procedures, a transfer to a hospital better equipped for his needs 45 minutes away. He underwent a 10 hour tumor resection surgery by a world class Neurosurgeon, who was able to remove the entire tumor. It was an Ependymoma. Ependymoma. My life has revolved around this word for 7 months. Only about 200 children are given this diagnosis each year. Primary treatment is surgery, followed by radiation. Chemotherapy has been shown to have little to no effect on this kind of tumor, but radiation of a child this small would have lasting, devastating consequences. Following surgery, the agonizing choice was made for him to undergo Proton Radiation in Chicago, a 5 hour drive from our home. Proton radiaiton is a newer tool in the cancer fight. It allows for a more precise dose to be given at the tumor site, with little exit dose to cause damage to healthy brain tissue. I packed up myself and Dex and we moved there for 7 weeks, leaving my husband and three older children at home. It was horrible. Not only leaving the rest of our family, but watching my child being pumped full of radiation daily, 31 times. He was sedated for each and every treatment. To date he has been under anesthesia 44 times and is only 20 months old. I can't say I'll ever be comfortable with the treatment choice, but I have made peace with it. We did what we had to do. We made, what we feel, is the "best" choice out of a couple terrible choices.
After returning home, I have struggled daily with thoughts about his future. Will his tumor return tomorrow? 6 months from now? 6 years? Will he even be here to see his 2nd birthday? Because of the surgery and treatment he is still not walking. He requires physical therapy as well. Sometimes I feel like we live in hospitals and rehab centers. The cancer world is a tough world to live in. Watching other parents lose their babies, your heart bleeds for them. Will we be next? Even though we may be having a perfectly fine, normal day, the smallest thing can catch you off guard and send your emotions soaring. Packing away the older boys clothes and suddenly wondering if Dex will ever get to wear them. Planning a birthday party but stopping because you truly have no idea what life will be like in two months. As far as cancers go, we have been lucky. He has a fighting chance. Some kids never make it to the battle. Only time will tell what his (our) future holds.
Through all of this, I have learned one important lesson. You must find humor and joy, even in your deepest, darkest moments. If you don't, the abyss will suck you in. I don't want to go so far into the darkness that I can't enjoy the time we have. Learn to live in the here and now. Don't turn down that tea party invitation or the chance to play catch because you're "busy". You absolutely do not know when time will be up.