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When My Daughter Asked, 'Do You Hope This Baby Is Normal?'

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Several years ago, the thought of having another baby after all we’d been through with our son Braxton was simply out of the question. I was too scared and nervous to even entertain the thought. As friends of ours who also have children with special needs began expecting a child, I started to think more about the possibility. I asked them questions about how they felt, if they were doing more in-depth genetic testing from the very beginning this time, and ultimately admired from afar.

At that point in time, I decided if we did get pregnant again, I was going to do everything possible not to be blindsided. I was going to ask for more testing up front, so we would know what to expect this time. Going through an uneventful pregnancy, then being told moments after birth that “something is wrong” with your baby and waiting nearly 2 years for answers is an experience I never wanted to go through again.

But this summer, it happened. I found out I was pregnant. We had been talking about having another baby for quite some time, and finally our prayer was answered. At my first appointment, I was 8 weeks along, and the doctor explained she wanted to go through everything as if it were my first pregnancy, to be sure she didn’t forget something or assume I knew something I didn’t.

She began explaining our options for the first trimester screening. She told us about the standard testing they have been doing for years, and explained its efficacy in determining if a child will be born with Down syndrome. There is a new test that can predict with approximately 96% accuracy, and will also tell you the baby’s gender by 12 weeks. And there is another test that can check for a variety of other conditions. I looked over to my husband, and knew we were on the same page.

When we spoke after the appointment, my husband asked if I wanted to do the in-depth testing, and surprisingly, I said no. He then told me he felt the same way. We decided that knowing wouldn’t change anything. We’ve already got the resources and the support. If, by chance, we found ourselves on the journey again, we wouldn’t be blindsided this time. And finding out wouldn’t change whether or not we would keep the baby or make us love her any less. I realized we were in a very different place than we were several years ago, when we thought we’d ask for every test under the sun. I knew that with my husband and the systems we had in place, there was nothing we couldn’t face.

However, it wasn’t until several weeks later that I realized not everyone was on the same page. Disability affects the whole family. Disability is a part of many conversations in our household, and my daughter is very attuned to the challenges we face with Braxton, and more recently, with her as well. She was diagnosed with ADHD in December of 2014, and some aspects of the condition have been debilitating for her. We have been working hard to get her the support she needs medically and in school. She is very aware of the difficulties she’s faced, and often feels like an outsider, despite our best efforts to build her up and make sure she is included.

Some time after I told her she was going to be a big sister again, she came up to me while I was cooking and said, “Mom, do you think the baby is going to be born like Braxton or like me?”

At first I thought she was asking if the baby was a boy or a girl, or maybe if the baby would have her tanned skin or Braxton’s light skin. “What do you mean?” I asked.

“Do you think the baby will have Rubinstein-Taybi syndrome like Braxton? Or do you think she will have ADHD like me?”

I was completely caught off guard, and said something like “Oh, don’t you worry about that. Baby is going to be just fine.” She seemed content with my answer, and scampered off to watch TV.

She’s asked me some variation of this question at least four more times, and every time, I am without the right words to say. Last night, again, “Mom, do you hope this baby is normal when she’s born?”

Again, I am less than eloquent. “Baby girl, we are all born with our own special gifts, talents, and difficulties. We don’t know what to expect when the baby is born, but I promise she’s going to be OK.”

I have struggled with the disability conversation with my daughter from the beginning. How do I tell her about her brother? How do I make sure she doesn’t feel left out? What do I do when she thinks all the attention is on him and not her? We have had some struggles, but for the most part I seem to have found the right words, and she has been a huge advocate for herself and for her brother. But now I am at a loss again. Do I reassure her that the baby will be fine? Or will that make her feel inferior because the baby is “normal” and she has a diagnosis?  I have tried to tell her there is no such thing as “normal,” that we are all born with our own special quirks and that’s what makes us all so unique.

For now, she is appeased. She is excited to meet her sister. She kisses my belly every night and talks to her sister often. Hopefully I can find the right words to put my sweet girl at ease the next time she asks. Hopefully I can help her find her way to a place of acceptance and move past whatever mountain seems to be standing in her way.

This story originally appeared on Journey Full of Life.

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Originally published: November 23, 2016
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