A mom I follow and greatly admire recently shared that she decided not to post baby milestone photos because of the effect it has on other moms. Guilt, frustration, and shame just to name a few. She knew exactly what that felt like because she went through it with her first precious babe who has Down Syndrome and didn’t hit all the “important” milestones at the same time as other babies. I want to be real and raw with you all, and share that I’ve been dealing with those feelings for the last 17 months of my motherhood journey.
Most people who know me probably know that our daughter Olivia went through a ton of craziness when I was pregnant.
Our doctors always assumed there was an underlying genetic disorder, but it wasn’t one the typical syndromes found with a simple blood test for before birth. So after she was born, we opted to have her blood and my placenta tested to check for chromosomal abnormalities. This ended up showing that Olivia has what’s called Uniparental Disomy 16 (here’s some info on what Uniparental Disomy is, and I’ll be sharing more soon about how this happened to Olivia), which is an extremely rare chromosomal disorder. So rare in fact, that no one really knows what to expect in terms of development. Her gross motor skills (holding her head up, sitting unassisted, crawling, etc) have been greatly affected, which in turn has really affected me as a mom.
The feelings are real.
The guilt is real. I feel like I need to be working harder to help her develop faster so she’s on track with other kids her age. I frequently feel like a failure and that I’m never doing enough to help her grow. Then somehow she helps move me back into a place of grace and gratefulness without even being able to speak.
The frustration is real. Sometimes I just don’t understand why she can’t just learn to do things as easily as other babies. I get so frustrated at this precious girl who has overcome so much, and I forget to remind myself just how far she’s come already.
The shame is real. Though no one has said anything to me, I still feel absolutely ashamed and that I’ve failed her in some way. I’ve been reassured by many doctors that it was a random and rare occurrence, but I can’t help but go back over the first months of my pregnancy and wonder if I ate something wrong/did something I shouldn’t have/didn’t take enough prenatals, and if that’s what caused all this. And like clockwork, I’m reminded that I was chosen to be her mother for a reason, and that she was knit together perfectly in the eyes of her Creator.
More times than I can count, I’ve had to take a few minutes in a room by myself to Kim K. ugly cry about how hard this actually is. I’ve cried because it seemed like people all around me had great pregnancies, and I didn’t. I’ve cried because other families came and went within a day from the hospital with a baby in tow, and we were stuck in the NICU for weeks. I’ve cried because it seemed like everyone else could breastfeed their own child, and I couldn’t do it right. I’ve cried because our friends’ kids who are younger than Olivia could literally run circles around her, and she couldn’t even crawl.
Don’t throw a pity party for me, though.
I’m not writing this to let you know how many times I’ve cried in the last year and a half (Lord knows that’s a big freaking number), and I’m not digging for sympathy. I also don’t want people to feel like they can’t be publicly joyful and celebrate when their child does something wonderful or they find out they’re having a perfectly healthy babe. I simply want other moms in similar circumstances to know that they aren’t the only ones whose hearts drop a little when their friend’s younger kid learns to walk before theirs. They aren’t the only ones who dread each prenatal visit, anxious at what that black and white screen might show them.
Though this is a bit of a ramble, I hope it finds its way onto the screen of someone – moms in waiting, those with high-risk pregnancies, the mamas of kiddos with extra needs – who could use some reassurance that there are others out there who are in similar, if not the same, boats. Nothing has helped me more than knowing there are mamas out there who have been down this road before and they’ve made it through.
My heart is with you, mama.