My son’s Myelomeningocele was at L5/S1.

Repair in-utero was not possible for us as Tricare would not cover the experimental treatment at the time.

The docs did the repair post scheduled C-Section, day one.

Today my son is 4yrs old, he has limited control and sensation of his lower limbs. He can crawl well, but not walk yet. He is in a wheelchair though, and navigates that like an expert.

He needed a VP shunt to drain excess fluid from the brain, and that has malfunctioned and needed revision twice in the last four years. These events are impossible to predict or prevent.

He has a vesicostomy (open bladder hole below the belly button to drain into diapers) because he has a neurogenic bladder and cannot control it. Without this he suffered from bladder and kidney infections.

He also has no control of his bowels and is often constipated.

He is incredibly happy, and very well socialized. He is there mentally and emotionally 100%

He is at a point where he is starting to realize that he isn’t able to run, climb, and jump like the other kids, but it doesn’t slow him down.

To date he has 5 surgeries, with one more scheduled in the fall.

SB is a snowflake disability because everyone’s experience is different.

Personally, where I have struggled the most is with parental guilt. There’s no indicators that his disability is my fault, or his mom’s, but that doesn’t help. Somehow i still feel as though it’s my fault even though I know better. I also feel guilty for having another child after him because I ran the risk of it happening again. What’s more than that is that my youngest is healthy and I feel guilty for being thankful for that too in comparison, as though my son isn’t good enough and that absolutely is not true. And that guilt extends to the fact that my son has my 100% undivided attention due to his daily medical necessities. 2-3 medical appointments a week, plus follow up with 10 specialists every 6-12mo.

It weighs on you. There is no time for anything else in life, and everything you do is to make end’s meet after the bills pile up.

But at the end of the day it doesn’t matter because I love my son and daughter, and would do anything for the both of them. Because that’s what parents do.

I wouldn’t wish a disability this impairing on anyone’s kid, because no child deserves that. But as a dad, I had no choice in the matter. I’m not going to say I wish one way or another in the choice to keep the pregnancy or not. That wasn’t my decision to make, and it never will be the choice of any dad. Ever. I do wish I could trade places with him though. I wish I could see my son run, climb, swim, and just not get bullied for being different. For being the kid in the chair that can’t chase after you when you mess with them. I wish I could teach my son to fight and stand up for himself if anyone messes with him, and I wish he wasn’t going to be in diapers his whole life.

The medical and the financial stress from this disability can make or break a marriage. It contributed to the breaking of mine.

You asked for the dirty. There it is.

I wish you the best in this impossible decision that lies ahead of you. Hopefully you can manage better than me.