Some of you have asked me and my guess is… many more of you are wondering…. How do you do pregnancy after having a child with a disability??
I know that when I sat in the stall of my church bathroom and indubitably saw that little plus-sign, I panicked. I zombie-walked my way to my seat and I did anything BUT listen to the sermon. I sat in denial wondering how it could be. I made my husband B-line it to the nearest store in search of another test that would tell me in WORDS that my fear was not indeed true. Later, as the pee-soaked stick screamed “pregnant” at me, I reeled at how I would handle the news.
Honestly, brutally, my first thought was “maybe it won’t stick..” (Don’t worry little baby, that was just the panic talking)…but I thought it. I remembered my first miscarriage and then the magic pills I took with Judah to make sure he survived that haunted part in the first trimester. You know, when you are afraid to sneeze too hard? I thought. Hey, we are supposed to be a party of four. This wasn’t planned. This will be too scary, too difficult, too stressful. There’s no way it will last. It is decided. I will miscarry.
After my typical bout with irrationality in the face of change, I decided that I sounded ridiculous. What am I saying? I don’t want to lose this baby!! And in an instant I had to decide how to handle having this little wonder.
Just like there are the stages of grief, or steps for AA, I imagine there were the steps for accepting another baby into my wounded womb. The truth is: I don’t know though? Very few people have shared their views on the “pregnancy after the pregnancy”. I’ve searched. Maybe there is a jinx factor so no one mentions it? Maybe there are no worry warriors quite like me or maybe I just haven’t been fortunate in my plight for answers. Either way I feel compelled share the tug-of-war story that I so longingly searched for. So, maybe someday, some mama , looking for someone else to share sentiments with will find me. Our stories may not reflect in the mirror, but navigation to acceptance is a common plot theme that knows no time.
I was not trying to welcome another baby into my world. I was 40 when baby Judah arrived and devastated to learn what I was already convinced of. He had Down syndrome. I swore off having anymore babies for good was when he was in the hospital for 13 days with RSV. I was sure that my heart could not handle any more uncertainty . We were older parents with two beautiful gifts. We survived what we thought would kill us and we were ready to move on to “little advocating family” mode. That’s when our new normal was shattered.
I was convinced I had peri-menopause because I was freezing then sweating and sick and tired. I was not expecting to be expecting. That being said, after all my a fore mentioned craziness I came back to my faith. I thought of the greater plan that was given to us like a gift. It was a chance for my son Calvin to share the love and difficulties that may come from having a brother with a disability. A chance for Judah to be the teacher and benefit from both roles of big and little brother. A chance for us to have more love around our Thanksgiving table. And so began the fairy tale of imagining a perfect little family living out their lovely little life. …until we remembered the “what ifs,” until the doctors reminded me of my age and my past, until trauma returned as an unwelcome guest.
My husband and I had no formula for how to handle all of this. We have no experience and doctors are leery of swaying you in a certain way. All we had is what we have always had… our love, our gut and our faith in God. We had a benefit here as well. We knew that we could not only survive tough times, but actually thrive in them. We trusted ourselves and that was important. We also were now okay with Down syndrome. If we had another baby with Down syndrome? That would suit us just fine. It seems almost foreign to be typing this. 18 months ago I had trouble even staring at my baby. Now, I honestly can’t stop. I protect this child with every fiber of what makes me mama and I wouldn’t change a hair on his sweet little head.
We decided that we would meet with a geneticist. We met with 2 actually. We met with Judah’s doctor first. He told us that the type of Down syndrome Judah has is not genetic. That it was an error. I’ll never forget his comparison. He said, ” you go up your stairs a thousand times and you always do it just fine….but every once in a while those same stairs you know so well trip you up and you stub your toe, a hiccup in a normal occurrence.” I’m still not sure how I feel about this analogy as Judah does not feel like a stubbed toe. He feels more like being able to fly over that staircase; he exudes lightness. This doctor called it a hiccup, I think God was sprinkling magic. Tomatoes Tomatos. Anyway, this analogy did ease my apprehension about the little almond resting below my navel.
The next doctor we met sat with us for almost 2 hours as we weighed our options. The most clear-cut, obvious and accurate one would be to get the test. Everyone said it. Get the test. If you get the test you will know with 99% assurance. Just get the test. Here’s why we didn’t get the test:
- If I had the test with Judah, he may not be here. I’m not proud of that statement and it makes me cringe sometimes, but it is truth. Something called fate (and lack of insurance) intervened when I was pregnant and I never had to make that choice. I would like to think love would’ve kept him here, but the truth is, I don’t know ?? For that reason alone I am against the test.
- I was not supposed to get pregnant. I am old by pregnancy standards and not trying to have a baby. I feel like this pregnancy is bigger than me. In my opinion, you don’t mess with things bigger than you. You let the universe handle those decisions and you do not meddle!
- I have a gut feeling. I knew Judah had Down syndrome when he was just a tiny fetus. I worried myself sick throughout my nine months. (I have since found out that this quite common. It is also an amazing testament to mothers intuition. )This pregnancy I do not feel concern. I feel like this miracle is strong and stubborn and pretty much has always been willing her/himself into this world. (We also are not finding out if this marvel is a her or himself….surprise all the way baby.)
My mama gut has told me not to worry but I am a realist too. I have faith but I do not have blind faith. After all, we were given the gift of doctors for a reason too. My specialist doctor asked: If this baby had a sever heart defect would you feel the same about Down syndrome? The truth was, I didn’t know? What I did know was not to obsess. I ruined nine months of pregnancy worrying. I destroyed 3 glorious days in the hospital crying about what I did not know. Now I just can trust that all will be okay. I believe that I will not be given more than I can handle and I realize that we can handle a lot. At the end of the lengthy discussion , we opted to have an in depth sonogram with the geneticist and that if there were suspicions of anything real scary we would get more involved testing.
My advice is not to do what we did. My advice is not to forego the test and rely on the sono. My advice is trust yourself and what you’ve been through. It is to know what you can handle and to do what makes your pregnancy enjoyable. You cannot unknow what you know now. You went down the rabbit hole that led you to the world of disabilities and percentages and risks and all the stuff you were naive to before. You are a different now. You are also stronger,wiser, and equipped with capabilities that surprised you once before. You have superpowers. And so to those wondering how I will handle this pregnancy….. Leaping into our beliefs with a single bound, that’s how.