Yes, she has Down syndrome too

imageA fact that I honestly forget. All the time. In the grand scheme of Abigail, Down syndrome is at the bottom of my list of things to think about (when I say “think”, I often mean “worry”). I think about Down syndrome probably even less than I think about how to tame her crazy hair.

This is a good thing. Because October is Down syndrome awareness month, I wanted to share some of Abigail’s story, the Down syndrome part, so over shadowed by the “giant tumor in her head” part. When we had our 18 week ultrasound, they found 5 markers for Ds – VSD, dilated kidneys, ecogenic foci, absent nasal bone, and thicken nucal fold. I almost fell out of my chair as the OB went through one and another and yet another. Until he got to 5. And told me that my “risk” of having a baby with Ds, previously 1 in 700something, was now 1 in 2. A coin flip. I was shocked. Then, I looked at Stephen and just about laughed. See, my close friend, who was a little bit ahead of me in the pregnancy race, had just gotten a positive Ds test for her baby just a month or so before. So I had just walked through this process of shock, sadness, fear, etc with her. What on earth are the odds of that!? So so bizarre. The OB continued on about the options of amniocentesis and a less invasive free cell DNA test. I was half listening, still in disbelief. I opted to do the free cell DNA test and they drew the blood sample and set it off the same day.

Leaving that office, I was totally numb. Literally shell shocked. Not really because I was scared or grieving or whatever. More just disbelief. I mean, I’m only 31. How could my baby have Ds? I just couldn’t believe it. Truly, I knew almost nothing about Ds. Sure I knew of some families who had children with Ds, and I shop at Publix and had some very sweet baggers with Ds. So yeah. That was pretty much my extent of knowledge. It’s funny, awhile ago Stephen and I had some serious conversations about adoption one day, and possibly a child with special needs. Just, you know, one day. When we were ready and could handle it. On our terms. Not right now. And certainly I didn’t think I’d ever give birth to a child with special needs. After all, those children were given to “special parents” and those parents were usually amazingly faithful and had the patience of a saint. I definitely did not fit the bill. Stephen, maybe. Me, definitely not. I could barely parent my spunky 2 yr old. So I went home and promptly googled all our ultrasound markers and scoured forums and blogs and research articles for anyone who had as many markers as we did whose child came out “normal”. I found none. But what I did find was a shocking amount of “I’m going to abort, there’s no way I can have a child with Ds.” Really, really sad. That was never an option for us. But that’s a discussion for another post. Point being that I knew in my heart that she did indeed have Ds but I loved her immensely. When I got the call, days earlier than I expected it, I was not the least bit surprised to hear the nurse say that the test was positive. I cried some, but acceptance came pretty quickly. I had a feeling early on in the pregnancy that Abigail was special, that God was in this for reasons I didn’t know. I think I accepted the news quickly because I thought that this was the thing that I had been feeling. This was the way she was going to impact the world. With Down syndrome. And I became ok with that.

Most of my fear was (and still is) having a teenager or adult with Ds. A child with Ds is cute and adorable, just like all children. I thought an adult with Ds is a different story. I fretted about my child’s future, whether they could get a job, where they would live or if they could ever be independent. Could they make friends or get married, or would they be picked on for being different? Selfishly, I wondered if my husband and I could ever travel again, just the two of us, or retire to the Keys and live on a sailboat. Could I sacrifice my life to take care of a special needs child that grows up to be a special needs adult??

Oh how God laughs at us. So much of what we consider “life” is so not important. I mean really… Is going to Paris more important than taking care of a human? Easy to say but hard to really live out. I want to go to Paris! Like tomorrow. Please. We all do. We want to do things that please ourselves. Retiring to the beach with self sufficient kids that I never have to worry about? Sign me up! But life doesn’t work like that. Ds or no Ds, kids are all different. Some fly out of their nests, others hang around awhile. Or forever. We can’t predict that. I pray all the time to be less selfish. I hate the self centered thoughts that run through my head sometimes. Because the truth is, relationships are what’s important. That’s what matters at the end of the day. Your family being at the top of the list. I may not see the Eiffel Tower or swim with dolphins in Tahiti but my children will know they are loved. I go through my mundane life of being a mom, making peanut butter sandwiches and wiping boogers off everything, in the hopes that my girls know they are loved. That I’m happy I can’t pick up and run away to Italy because it means that I have them, I’m responsible for them and I can’t just leave. Truthfully, the leaning tower of Pisa pales in comparison to their smiles and sticky hugs. And if Abigail lives with us forever, that would be a great, great thing!

Another fear was that all I’d think when I saw Abigail was Ds. Even feared maybe I wouldn’t love her as much. I prayed repeatedly that when I looked at Abigail, I wouldn’t “see” Down syndrome. I didn’t want to look at her sweet face and focus on her Ds-like facial features. I wanted to see HER. God definitely answered my prayers on that one. I literally forget she has Ds on a daily basis. Maybe because I’m busy thinking about brain tumors but I think it would be like that even if she didn’t have the other issue. We haven’t tested her DNA for a 100% certain diagnosis so sometimes I wonder if she really even has Ds because I don’t see it. I actually asked our hospice nurse if Abigail looked like she had Ds and her prompt response was “oh yes”. So I guess she does “look like” a child with Ds. But to me, she’s just Abigail. She’s totally “normal” to us. Down syndrome, brain tumor, whatever. She’s Abigail. She loves to lay on her back and look around. Her hair is way cray cray. Her tongue has a mind of its own. She is forever pooping or peeing immediately after we remove her dirty diaper and put a clean one down. She makes the sweetest faces. She’s easygoing and the best snuggle partner ever. And she’s a 10lb champion fighter single handedly defying the odds and taking down brain tumors. Abigail has Down syndrome. But she ISN’T Down syndrome.

I think people with Down syndrome see the world differently than us “normal” people do. Probably better and simpler. Abigail will probably see much more of the good in life than I ever will. Sometimes I think we are the ones totally missing out. Maybe it’s our quality of life that is lacking. And not the other way around.

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5 thoughts on “Yes, she has Down syndrome too

  1. Dear Erika – may the Lord bless you and your princess with all the happiness in the world! Abigail has been in my heart ever since I first read your story in a newspaper and I pray miracle over her body. Ds kids are wonderful human beings and I am speaking from experience as I too have a 2 year old DS child. Thank you for sharing your story and please keep us on the loop as we feel we are part of this as well.

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  2. I loved reading about, “looking at her and seeing down syndrome.” I thought, perhaps, I was the only one who looked at my sweet boy and saw Down Syndrome…
    It occurred to me mid summer, I no longer look at Easton and see Down Syndrome, I see Easton, a very typical almost 3 yr old with a smart mind and mischievous look. That day, I wept, for all he will be.

    I am over joyed to read about your journey and your faith in God.

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  3. As a mom of an almost 5 year old girl with Ds, I found myself nodding “yes” all the way through your post. I think we all have the same fears – my main prayer before Kaylen was born was “let me see her and not Ds”. We’re still in the “cute” stage (well, except when her ‘stubborn stinker’ side takes over…), so I totally understand about the fear of the future – will she have a job or live on her own? will she ever have any friends who see past her disability and enjoy her for who she is? These voices have kind of faded into the way background the same way that we don’t think about Ds every day of our lives (well, except for now we’re waiting for a birth mom to choose us as the adoptive family as her baby with Ds…). 😉 I figure that this is an amazing time for kiddos with Ds to be born – inclusion in schools, increased studies, amazing medical care, and the beginning of social acceptance. And we serve an amazing God. Your story continues to bring me to tears – first sad, and now thankful tears to God for your new ‘unmeasurable joy’. Seriously – I’m sitting here with goosebumps. Thank you for sharing your story. (and I really, really want to rub her fuzzy head against my cheek – she is so stinkin’ adorable!) Congrats on your amazing miracle.

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