Brayden's Message: Enjoy Every Second

A special story by Bryaden's mom, Alicia.... A reminder to enjoy every second!

Find out more about Brayden and Alicia at their blog, Small Portion of a Life's Journey, or their Caring Bridge page.

My husband and I have been married for nearly 10 months. I have 2 girls, ages 7 and 4, from a previous relationship; he has one son, who is 3 from a previous relationship; and we share a son, who is Brayden, and he is nearly 14 1/2 months old. My husband is in the US Navy and we're currently stationed in Charleston, SC while he finishes Nuclear Power Training for the next 7 months.



My pregnancy was a roller coaster of emotions, everything from shock and denial to excitement and hope. I didn't know I was still pregnant until I was around 5 months pregnant, due to irregular bleeding, and we found out then that there was a problem. I found out during an ultrasound in about my 22nd week that Brayden had a problem with his brain. They didn't know at that time what exactly the diagnosis was, or if they did they didn't tell me that it was hydranencephaly. We were advised to terminate, but I couldn't bring myself to do that and held on to hope that Brayden would be okay.

I was scheduled for a c-section, my husband was in SC and I was in MO so this was for convenience and due to the fact that Brayden's head was measuring very large. They warned me that he would possibly not survive the birthing process if he survived the pregnancy. And if he did survive, he wouldn't be able to eat, breathe, or regulate his own body temperature...and he wouldn't leave the hospital. Brayden decided to come earlier than the scheduled c-section & although I had complications from my c-section, Brayden was a strong little man and didn't need any help after birth.



Aside from his head being large, he didn't appear to have any other health problems. We thought, perhaps, that the prognosis previously given had been wrong.



Since the doctors told us that there was absolutely no hope for him to survive and sent us home on hospice care, telling us to prepare for his passing, we were devastated and prepared for the worst.



My other 2 girls were well informed to the fact that their little brother had a problem with his brain, and that he would probably not be with us for very long. It was a couple of months before we realized that he was doing very well, despite the odds given to him, and many more months before we stopped planning for his passing and celebrating his life with us instead.

I found great information at the Rays of Sunshine web site. I joined the Yahoo support group through that site to network with other parents of children with hydran. Through them I found a great sense of optimism for Brayden and his life, rather than the doom and gloom outcome provided by the doctors in the beginning.

I also found great support through the hospice program in the early days. They offered a supportive staff, especially our nurse and pastor who visited with us every few days. We were dropped from the program after we elected to have a shunt placed to relieve the CSF pressure building up in Brayden's head. That was a difficult decision, I had relied on the hospice care for the emotional support they provided, but that surgery saved my son's life!

Brayden's diagnosis is Hydranencephaly ...a large portion of his brain was damaged in utero, ultimately by a stroke, and replaced with sacs of cerebrospinal fluid. The cause is unknown. We were told that he didn't have a brain, when in fact he does have pieces of his, which are apparently doing some work of their own.

Brayden is not on any medications! That's a huge feat considering his condition!! He receives Early Intervention services every other week, Physical Therapy twice a week, Occupational Therapy once a week, Speech Therapy twice a week...and visits with the neurology team every 6 months.

He is defying the odds, growing stronger every day, and proving himself to be nothing short of a miracle!

Brayden is stubborn and proves that during his therapy sessions by doing the complete opposite of what he's supposed to do, while smiling every second of it. His dad plays the guitar, so he LOVES that, but really loves any kind of music...even more if there are lights involved! He loves the people that surround him, his daddy and I and his sisters, and will show great amounts of unhappiness if he's not with us...especially me, he's a mommy's boy through and through :) Most of the time, unless he's hungry or sleepy, he's a happy little man full of smiles and chuckles for everyone he loves.




My advice to other parents is to never take the Dr's word, or the textbook diagnosis and prognosis, as the last word. There are stories of children and adults alike, defying the odds given to them and proving their doctor's prognosis wrong. Having hope for your child can prove to grant miracles in itself. Keeping the levels of optimism high is important, a happy atmosphere is nurturing for any child, especially one that is said to be teetering on the edge of life here on Earth. Read everything you find about your child's condition, knowledge is power, and use it to advocate for your child and fight for what you know they need to provide them with the best quality of life possible!! Most importantly, enjoy every second...




Resources I find helpful:

~the book Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill
~ my own blog full of information and inspiration
~blog surfing has proven to provide massive amounts of inspirational stories!
~networking with parents in your area with special needs children
~national parent-to-parent networking for parents of children with your child's condition specifically
~online support groups...search Yahoo Groups and you'll find one for your child's condition