It was the year of 2007 and My pregnancy was absolutely normal and at the very end of my labor they realized that I had almost a gallon of "extra" water. So we had no idea how special Bryden would be. His newborn screening popped up with Cystic Fibrosis, which is primarily a lung disease, but he wasn't officially diagnosed until a year later.
Was he a carrier or displayed symptoms? He was borderline until then.
Imagine being told you would likely outlive your newborn. It is heart wrenching. No mother wants to be told that.
Bryden had droopy eyelids so he had to have eyelid surgery at 2 months old so he could open them. I literally thought he was just sleepy all the time.
At 4 1/2 months he had his first seizure. Until then, he had been developing normally. I spent a week alone in the hospital not knowing if he was okay with electrodes on his head. He was diagnosed with infantile spasms which grew to officially be epilepsy. Because of all this he also has severe developmental delays. He was on a lot of horrible things at first to control his seizures as a baby, and I truly didn't get to experience who he was. He was very lethargic, and I had the doctors take him off of the steroids and find a better medication/solution.
The steroids made him blow up with water weight so badly he went from 3 month clothes to 9-12 months, and he couldn't even open his eyes or lift his head. It was awful, but at his first year he started "deflating" and becoming alive again.
I left my brief marriage when my son was 4 1/2 months old.
Single mother since.
At 2 1/2 years old, Bryden had Bilateral Hip Osteotomy because his hips weren't angled into his hip sockets. At about 6 years old, I felt like there was just something more. I pushed for an MRI and Bryden was then Diagnosed with Cerebral Palsy.
In short, Bryden is non verbal and non Mobile with severe delays. He has cystic fibrosis, cerebral Palsy, epilepsy, and Cortical Visual impairment.
He is in a manual wheelchair. He can sign "more", "thirsty", and we are working on "all done" as well as a few other signs.
He can eat normal food, play with toys and sit up. He loves to clap, is in Love with Music, and is a total Foodie. LOL
He is the brightest, goofiest, sweetest little boy. A true Character. I've never known such strength, patience and perseverance. He's truly my little sunshine. Such a smile and such a Ham.
Bryden is also quite driven and stubborn, which makes me laugh as a mom. He is easy going and loves to have a good time.
I feel like he just makes everyone smile and reminds people what life is truly about.
Bryden is 11 years old now, and will turn 12 In October. He goes to a public school and has a wonderful team that has truly helped him learn more skills and be his BEST SELF.
I am so grateful and lucky to have special people in our lives that bring us hope, faith, support, and love.