I often get told, “You are so strong!” Or “I don’t know how you do it.” The truth of the matter is, this isn’t the first (or second) time we have faced the challenges of having a special needs child. Many of our new friends have no idea the struggles we have faced in the past 8 years. At my lowest point, I questioned God and asked him what we did to deserve the circumstances we were facing.
When Brayden was born (December 31st, 2008) he was a very, very sick little boy. When he was just 6 weeks old he was admitted into the hospital and spent the next year fighting for his life. Literally fought for every, single breath for months. He went on life support, he required blood transfusions, 11 surgeries and procedures, a ventilator breathing for him, medically induced comas. It was brutal. It was hell. Ironically enough, the same doctor that saved Brayden’s life is the same doctor fighting for Elliot’s.
When Brayden was finally released from the hospital we thought the worst was behind us. And then red flags began to pop up again. Brayden wasn’t babbling. He wasn’t responding to loud noises or voices. We could literally clap our hands next to his ear and he would even blink. Something was wrong. Very, very wrong. Very quickly Brayden was diagnosed with a severe sensorineural hearing loss. He was fitted for hearing aids at 8 months old and began intensive speech therapy and sign language.
…but it didn’t stop there…
Brayden was delayed. Delayed in speech, gross motor development and fine motor development. We believed it was weakness from spending so many months in a hospital bed. Unable to “practice” his baby skills. We began intensive physical and occupational therapy to get him back on track as quickly as possible. After 4 months his therapists dropped a bomb on us, they believed Brayden had cerebral palsy and needed to be seen by a neurologist. At that appointment, their intuition was confirmed. Brayden was diagnosed with Spastic Cerebral Palsy with hypertonia and right sided-weakness. We were told they did not know if he would ever walk and *IF* he did it would be very limited and impaired. We got to work. And worked HARD. We made the nearly 90 mile round trip to PT, OT, speech and feeding therapy 5 days a week for years. His prognosis began to change…from *IF* he’ll walk to “When he’ll walk.” Brayden took his first steps just before his second birthday! Defying everything they believed would be his future. It was about this time that we noticed he started ripping out his hearing aids every chance he got. I was convinced he could hear again and his dr agreed to preform a hearing test under anesthesia to confirm. I’ll never forget when his dr came out from the OR with tears in his eyes. He said, “I don’t know how. And I don’t know why. But he can hear again.” A permanent hearing loss, by some miracle, had reversed itself.
Just as life began to calm down and Brayden was on a path to health and healing, we noticed some very odd behaviors in Reese (our now, 9 year old daughter). Her sleep patterns were severely disrupted. My “perfect sleeper” would now wake up in the middle of the night and stare blankly at walls for 4-6 hours at a time. One morning, out of the blue, she started walking on her tippy-toes and could no longer walk flat-footed. Despite drs telling me that, “she just wanted to be a ballerina” I knew there was something seriously wrong. I fought and pushed for answers and at just 3 years old she was diagnosed with 2 forms of epilepsy… one of which is very, very rare. She was admitted into the hospital where her EEG lit up like a Christmas tree. Her brain activity was grossly abnormal and she was seizing throughout the day and relentlessly at night. It was also the underlying reason behind her severe toe-walking.
She began a strict medication regimen and started intensive physical therapy to retrain and stretch her muscles in hopes that she would regain her range of motion. After a year of therapy and minimal progress, we were left with 2 options: surgery or serial casting. We opted for the casting. Reese was fitted for knee high casts on both of her legs. She carried them around on her tiny body for 10 weeks and never complained. She sat through 2-3 hour appointments every week to have them changed and never complained. She endured the pain and discomfort and never complained. I have never witnessed such resilience in a child. Always smiling. Always happy. Always hardworking.
My husband and I had always discussed having 4 children, but after the medical issues our children had faced we were very concerned about the possibility of an underlying genetic issue. Both of our children and ourselves underwent genetic testing and we counseled with a reproductive specialist. We were ultimately told that both children’s medical diagnosis’ were isolated issues and we were not at risk if we decided to go forward with our decision to grow our family. Their cases were a “fluke.” I clearly remember the geneticist telling us.
…and yet we wait.
We waited several more years until we felt our children were in a medically stable place. We ultimately decided that our family was not complete and we began to try for Elliot.
When Elliot became sick I felt a sense of guilt that I had never experienced before. I felt so guity that our decision to have another child meant another sick baby. I vividly remember leaving a drs appointment with Elliot and having to pull over on the side of I-94 because I was crying so hard. I was on the phone with my mom at the time and told her I had never wanted to put another child through a medically complicated life. That I felt mislead. We had done all of the testing. We had waited a long time. Thought long and hard about our decision. Prayed about it. I now know that nothing could have been done to prevent whatever “this” is that Elliot has. And there was no way to predict or test for it…because we truly have no idea exactly what “this” is. Once again, it was a “fluke.”
My point of this (very long post) is that I am not the strong one…my children are. They have fought, overcome and defied odds. They are resilient and brave. They have been through more surgeries, testing, anesthesia, pokes and pain than most of us will ever endure in a lifetime. The truth of the matter is, I am not strong. I draw my strength from them. They are my inspiration, my driving force, the reason I wake up and fight each and everyday.
This certainly isn’t our first rodeo, but you can bet your ass we are going to grab this bull by the horns and bring it down like we always have.
(Below is the link to Brayden’s Journey. It is the story of our sweet boy and all that he endured in just the first few months.)
Somewhere in the middle 