Congenital Birth Defects

I’m still dealing with a lot of anger. It makes me feel weak. I feel weak as a mom and weak in my faith. I feel ashamed because I’ve started looking into this huge community of moms of premature infants who have had to endure so much more than my son and I have.

I take it out on my husband. I have flashbacks to the weekend my son was born and review what I did and how I felt to see if there is any point I could have made a different choice for a different outcome.

Rationally, I know there’s probably nothing I could have done to prevent my son’s prematurity. Just as there’s nothing I could do to prevent the shortened tendons in his left foot causing it to twist in. Of all the things that could be wrong, this is fixable and probably without surgery.

But I’m still angry, and I mourn. I hate that everyone who sees my “newborn sized” baby in a cast think he was injured in some way. I hate the pity when I explain to them why he’s actually wearing it. I worry about his future struggles with 23 hour bracing for the next several months and 12+ hours of bracing until he’s 4.

I know I should be thankful, but I’m still just too mad.

 

 

Aren’t All Kids Special?

We’re having trouble labelling our son “special needs.” Aren’t all children special, and don’t they all have needs? That’s why they have us. The parents.

I think Drake’s orthopedic care team has been surprised by both my mild reaction and his. Every cast he has had and even the tendon lengthening “surgery” haven’t phased him. I didn’t break down on them or have a cry.

See, he’s already a survivor. I’m expecting to feel a jolt of reaction to seeing him in the brace for the first time on Tuesday. Like the cast isn’t a permanent fixture in our household, but that brace or some version of it will be around until he’s 4 years old.

The thing that actually makes me sad is the fact that having a cast put on every week doesn’t phase my 14 week old son. He just sucks on his soothie paci a little harder, bearing it. Like he’s born with dignity everything else done to him in his short life.

Nope. I probably won’t cry either seeing that brace go on my baby boy. It represents hope. Hope that his future won’t include long lasting effects of his very low birthweight and prematurity. Hope that he’ll survive and endure.

Hope that I will never again see him limp and lifeless in my husband’s arms as we try to clear his nose and throat from the mucus of a reflux spell.

My son is special. His needs are special to us. But you can take your label of disability and shove it where the sun doesn’t shine.

Tomorrow we go for his hip ultrasound. I just hope it’s clear so he’s not faced with another fight.