It's October and it is officially Spina Bifida Awareness Month.... and it also happens to be the anniversary month of the most grim diagnosis we could have ever received (until we found the right care team).
Before Colt's diagnosis, we only knew what Google and some really uninformed doctors had to say about Spinda Bifida. What we didn't know was all the joy that would be brought into our lives once Colt made his entrance into the world.
The initial diagnosis that we received at two of our local hospitals was enough to scare any expecting parents to death.
When we decided to meet the team at CHOP, Colt's neurosurgeon said things to us like; his brain is in great condition, and I will be your partner in making sure it stays that way. His IQ may be 10 points below your other son... but then again I haven't met your other son, so maybe it will be the other way around
He reiterated to us that walking, it's not everything. He told us that based on Colt's lesion level and current movement, that he WILL walk, he just couldn't say how high his bracing is going to be. And when his legs get tired, he can roll. You will raise him to be a kind person, and a strong person. He will have friends. Incontinence can look different for everyone, and I don't go around talking about how I go to the bathroom, why should he have to? If it turns out there is any sexual dysfunction, that does not mean he won't fall in love one day. There are tons of resources to help people start families ... if he chooses that path. Because that will be his choice to make... as it is any person's choice... because he is exactly that, a person..... and people, we all do things differently.
He reiterated to us that walking, it's not everything. He told us that based on Colt's lesion level and current movement, that he WILL walk, he just couldn't say how high his bracing is going to be. And when his legs get tired, he can roll. You will raise him to be a kind person, and a strong person. He will have friends. Incontinence can look different for everyone, and I don't go around talking about how I go to the bathroom, why should he have to? If it turns out there is any sexual dysfunction, that does not mean he won't fall in love one day. There are tons of resources to help people start families ... if he chooses that path. Because that will be his choice to make... as it is any person's choice... because he is exactly that, a person..... and people, we all do things differently.
If not for an amazing care team at CHOP and some really amazing families that gave us a glimpse into the real world of life with Spina Bifida, I'm not sure I can say for certain that Colt would be here today.... and what a gift we would have robbed the world of.
It's important to know that not ALL cases of SB are the worst cases of SB. In fact, most aren't. And even in the "worst" cases, you'll find so much love, happiness, a family of fighters, and a heck of a life worth living.
We want to help spread awareness and advocate for Colt and for those living with Spina Bifida. This year we are raising funds to go towards the Children's Hospital of Philadelphia's Spina Bifida program. This program helped us to see the potential in our warrior and truly believes that he is SO worthy of this amazing life that together, we will help him create <3
Thank you for visiting my Celebration page for Children's Hospital of Philadelphia (CHOP). Please consider making a tax-deductible donation to support CHOP.
Get The Word Out
https://chop.donordrive.com/campaign/SB-Program-at-CHOP----CrushingItWithColt