The Death of an Ideal

Memorial Day has passed, and that means family pictures flooded my social media feed. Picture after picture of babies in their cute, little patriotic outfits, sitting with their families, crawling, or toddling along. And that’s when the thought entered my mind, “She’s the same age as Hannah and can hold her head up so much better.”

Little thoughts like these sneak their way in every so often. Comparing Hannah’s development with other babies her age. I think most mom’s of kids with Down Syndrome struggle with this, while still being incredibly proud of their children. Hannah has overcome so much already, it’s impossible not to be proud of her. We were told at her two month well-check that she was almost right on track with a typical two month old. The nurse practitioner had told me that some parents of children with development delays don’t like filling out the ASQ forms because they don’t want to be reminded their children are “delayed.” I, of course, scoffed at this thinking it would never bother me that Hannah wasn’t hitting her milestones. Then, subconsciously, I compared her to another baby less than one month later.

I remember seeing the picture of a precious baby boy, who is not much older than her, smiling back at me, and thinking, “he looks so much more aware than Hannah. He’s smiling so much more than her.” It’s hard to describe the feeling I had when I noticed her first slight delay. Honestly, looking back it seems silly. She smiles beautifully, and she gets complimented on her awareness all the time, but in that moment I was crushed. Since then, I’ve noticed a few more delays, and each time I see a baby her age, or younger, accomplishing what she should be able to, my heart aches.

I’ve tried to justify feeling this way by telling myself my heart aches for her.  Trying to convince myself I’m sad for her, but I can’t. That would be a lie.

The truth is, my heart aches for the baby I had planned on having. 

Though we found out she more than likely had Down Syndrome early on in my pregnancy, and I mourned the “normal” baby I thought I was going to have then, I’ve realized that I’ve mourned since she was born as well; and that’s okay.

It’s taken me a very long time to be able to feel like it’s okay to mourn the perfect baby I thought I wanted. It’s still very difficult for me to accept, but I’ve at least made progress. Anyone who has a child with Down Syndrome  knows the “Welcome to Holland” story. It’s one of the first things you receive when you’re given the diagnosis. For those who don’t know, it talks about how having a baby with a disability is like planning a trip to Italy, only to wind up in Holland. It’s not Italy, as you had planned, but it’s still beautiful. I remember reading that story with tears running down my face thinking there was absolutely no way Holland could be as beautiful as Italy. It was out of the realm of possibility that you could be as happy in a strange and forgein place as you could be in your familiar comfort zone. I mourned for my ideal baby in that moment, and many after that, and I thought I was done; but I wasn’t.

I’ve come to realize that with each milestone not met, with each new Down Syndrome related diagnosis, it’s okay to grieve again. I don’t dwell on it, or wish to change my daughter in any way. I do, however, mourn the baby I thought I would be having, and lay her to rest once more. I remember that I have been given the gift of a unique, beautiful baby girl who has brought me more joy than I could have imagined possible. I’m reminded that while Holland may have challenges, unexpected twists and turns, and heartache, it has in fact proven to be so much better than Italy.

I never dreamed I would have a baby with Down Syndrome, but now that I do, it’s as natural to me as the sun rising each morning. I’m starting to think perhaps I was mistaken in thinking a “typical” baby was my ideal. Instead, I think I got my ideal baby after all. Hannah was the ideal baby I didn’t know I not only wanted, but needed.

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