So. You just got back from your OB’s office with some upsetting news: Your child has a special needs diagnosis, and you are now facing a special needs pregnancy. And you’re terrified. You feel like a pile of bricks was dropped on your head.
If you’re like our family – we discovered our son had Spina bifida at a routine ultrasound in 2012 – this is the most upsetting news you’ve ever gotten, and you’re so stunned, ashamed, and guilt-ridden, you can’t imagine how you’re going to get through the next few months with your sanity intact. Forget about raising a kid with special needs – you’ll be lucky if you can get through the next ten minutes without crying or throwing up.
That was so us. Eighteen months later, we’re still looking for answers, but we’re happy to say that we survived our special needs pregnancy with our sanity (mostly) intact. I don’t claim to be an expert, but there are four things that you are almost guaranteed to experience.
1. You will Google the hell out of your kid’s diagnosis. On the way out the door of our OB’s office, right after learning our son had a serious neural tube defect, one of the nurses pulled me aside and whispered, “Do not look this up on Google Images.” Obviously, we went and did it anyway almost the minute we got home. When you type “Spina bifida” into the Google search bar, the resulting images are either open spinal lesions (gross) or pictures of John Cougar Mellencamp (apparently he was born with a really mild form of Spina bifida – who knew?). The web results were almost as bad – worst-case scenarios and misinformation abounded. Googling our diagnosis didn’t help us any, and it may have even scared us more.
Probably the best thing I did online after we learned about our son’s diagnosis was to join some Facebook support groups. Not all groups are supportive and drama-free, but when you find one that is, it’s priceless. There, on our SB support groups, (and not on Google Images), we were able to really put a face to our diagnosis and get a better idea of what a life with Spina bifida would entail. All in all – there’s a huge spectrum of ability. And some really encouraging parents. And some really adorable kids. Join a support community and soon you’ll be hearing from dozens of moms how life with this diagnosis will really be – good and bad.
2. You will blame yourself. Getting any special needs diagnosis is devastating, and a Spina bifida diagnosis often comes with a unique layer of mommy guilt. We don’t always know what causes diagnoses like Down Syndrome, or Trisomy 18, or autism, but we’ve all heard that familiar refrain from our obstetricians: Take a shit ton of folic acid, they warn us, because we know it can prevent neural tube defects. So what happens when it turns out your son has a neural tube defect? Endlessly, I scoured the Internet (again), wondering what I had done wrong. Should I have been taking more than just my daily prenatal? Was it the Zoloft I was taking when he was conceived? Was it genetics? Was it my fault? It was my fault, wasn’t it?
My biggest advice? Don’t think about it. Just don’t. It could be genetic. It could be environmental. We don’t know exactly what causes a diagnosis like this, and we probably never will. But whether you decide to continue the pregnancy or not, you’re going to need all the strength you can get in the months ahead. Blaming yourself zaps your energy and spirals you into self-loathing.
3. You will grieve. Yes, you will. No matter how wanted this child was, no matter how much you may love this child, nobody anticipates getting this kind of diagnosis, and the blow is devastating. And from an outsider’s perspective, Special Needs World is this terrifying, mysterious hell that nobody in her right mind would choose to travel. From someone who has been there, finding out your baby has a birth defect or any other kind of special need is like getting the wind sucked out of you over and over again, and that kind of pain is simply unsustainable.
The only thing I can suggest is to just honor your feelings as they come. Cry. Rage. Throw stuff. We found out Henry had Spina bifida one weekend in early November, and it wasn’t until at least Thanksgiving that the fog started to lift even a little. For the next four months, I vacillated between outright denial, ridiculous optimism, and flat-out refusal.
Nature is cruel in that even when you think you hurt so much you’re going to die, somehow you never manage to actually die. And then things get better. So just keep breathing.
4. You will love him more than anything. Eighteen months after our diagnosis day, we have a silly, strong-willed butterball of a boy who (unexpectedly) does everything our OB said he wouldn’t. Quite simply, despite having multiple special needs and multiple gross motor delays, we couldn’t imagine our lives without him.
It’s an almost universal consensus among special needs parents that pregnancy is the hardest part. If you get a special needs diagnosis during your pregnancy, there’s little you can do besides cry, wait, and Google obsessively. You start to feel like you’re giving birth to the diagnosis itself, instead of an actual person with your mother’s eyes and your husband’s big head and an adorable double chin. Take heart: Your child is not his disability. Soon, you’ll welcome a sweet little person who just so happens to have special needs. It won’t always be terrifying. It’s not always going to hurt like total hell. And by the time your little friend is born, you will absolutely love him to pieces.
Is it scary? Yes. Is it stressful? God, yes.
But is it worth it? Undoubtedly.
Related post: Choosing Moxie