Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care — and that so much would be unknown until he was born. Each year since Chance was born I have devoted time to capture moments with other families affected by spina bifida with the hopes that this would would help our local spina bifida chapter, the Spina Bifida Association of Central Florida , and so that it would help the world see the beautiful souls I wish I could have met after we initially received the diagnosis.
Five years later I still remember the diagnosis so vividly — and I reflect still at that material I was provided. So can someone please tell me why in prenatal resources are virtually non-existent and that images of individuals living with spina bifida are rarely included in resources provided to newly diagnosed families?
That somehow, someway…we could create hope. Has it helped? Have we made a difference? Now I just pray that in time we can share so much of this work so much sooner so that in the moments following the diagnosis families will see the faces of those who live with this birth defect daily — to help them see that living with spina bifida IS possible.
Sadly I still to this day learn of the families who are just so frightened and consider or follow through with termination — and though I believe everyone is entitled to their own choice I fear the lack of resources available and the way in which a doctor delivers a diagnosis can have a strong impact on how a family copes with the decisions they are presented.
Nor could I imagine it without the families affected by spina bifida that I have come to know so well. In the past five years our community has grown and our families have grown closer than ever before. So here it is everyone — the 5th year of this work — the Spina Bifida Awareness Campaign. Thanks to every family who has participated this year — I hope you all enjoy it!
