Wednesday, April 25, 2012

Harmanie :: Adult with Spina Bifida

Harmanie (age 29) is recently married and has worked hard to make her home accessible. She loves to dance and uses the skills and knowledge from her University education to contribute extensively to her community.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 11, 2012

Ryan :: Adult with Spina Bifida

Ryan (age 35) lives independently in an accessible condo downtown near his workplace. Since graduating from Grant MacEwan Community College, Ryan continues to work hard and has succeeded in the workplace. He enjoys traveling, watching sports and spending time with family.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 4, 2012

Roman :: Child with Spina Bifida

Now that Roman is quickly approaching his 3rd birthday, I am constantly looking back and reminiscing on our journey. I never thought we would reach this point. I certainly never thought we would be this normal!

Two weeks before my due date, I had an ultrasound that showed Roman's Spina Bifida. I lived in front of the computer after that day. The way I saw it, I had two weeks to prepare myself, my husband and our 2 year old daughter for an event that would change our lives forever.

I was devastated. I woke up every morning to the painful reminder that this wasn't a dream. I went to bed every night hopeless and beaten. Exhausted from worry and despair. My one lingering thought was, "Why my baby?" After thinking of all of the horrible things I've done in my life and negotiating with Karma and God; I decided this wasn't how this is going to happen. Roman, wasn't going to be born a "devastating event" Roman was going to be born to two parents who, for a whole year, begged for him. And now he's ours.

His birth and the months following were a whirlwind. Roman was born weight 8 pounds 9 ounces, and 201/4 long. He was perfect. He was amazing and he was mine.

The day after he was born he had back closure surgery, a week later he had the surgery repeated, because it wouldn't heal, and was still leaking. A few weeks after we got home, he had his shunt placed, When he was four months old he had emergency surgery to repair a rare heart deformity called a double aortic arch, At some point he had a shunt revision surgery and we trailed off with a couple ear tube surgeries, adenoid removal and a double leg casting for a tendon release.

10 surgeries before he was 2 years old. I thought, "This is our life now." I thought we would live in and out of the hospital, I thought we would fight off stares and points and whispers, I thought we would neglect our daughter, I thought we would have machines and tubes and I am incredibly happy to report that I thought wrong.

Life with a child with Spina Bifida is unpredictable, it's an emotional roller-coaster, It's messy and it's scary at times. Hell, terrifying.
But it's the life handed to some of us, and for me. I don't have time to get caught up in the "why me" and "how come" and the "I can't do this" Because I've got play dates to attend, a park to explore and this coloring book isn't going to scribble in itself.

If I could go back and change Roman's diagnosis, of course I would. I wouldn't wish this pain on anybody and certainly not my child. But I can't do that and can't dwell on the idea, so instead I advocate and I talk, and talk, and talk.

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