Monday, November 12, 2018

They Were Happy He Didn't Have Down Syndrome

Beth is our oldest and when I got pregnant with Sharaya a lot of people asked me if that was the wisest choice since we had Beth to take care of. What if this baby has Down Syndrome too? I had never really thought it but but we just told them that if this baby had Down Syndrome, then we'd know what to expect. We really weren't concerned about it either way. 

Now, I will admit that when Sharaya was born, the first thing I asked Chuck was, "Does she have Down Syndrome?" When he said no, it was such a huge relief. But we didn't live our lives like that, thinking Beth was a burden and she made our lives so hard... she was just Beth. One of our three girls. (How Chuck survived all those years I'll never know!)

Beth was Beth and that was that. We lived our lives. We've never been easily offended, or hurt when someone said an insensitive comment. We've just never taken that stuff personally.

So I was really surprised the other night when I heard a testimony at church from J who said a friend had been told her unborn baby had Down Syndrome and 2 holes in his heart. But after family and friends prayed, the baby was born perfectly healthy. No holes and no Down Syndrome!

The church exploded in praise and cheers. And I sat there thinking, "Wait a second." I was clapping too but something just wasn't right. For the first time in over 34 years, I felt... Well I don't exactly know what I felt. It was this odd feeling down in my heart.

It was such a real feeling too, kind of a mixture of sadness and isolation and shock. It's really hard to explain it.

Like you've just heard your best friends taking bad about you behind your back.

"Is this what you've thought all this time? Is this how you all really feel?!" 

It was like they were so excited he wasn't gonna be like Beth. But all these years I thought you all liked Beth?!

She's grown up there, attended for 30 years and all that time she's been the only person with Down Syndrome. And at that moment, when everyone cheered because he wouldn't be like Beth, I suddenly felt so isolated.  

But I was telling Chuck it wasn't so much about their reaction to the news about the little baby, but that feeling I had. That very real, first-time-in-my-life isolating feeling.

What was that? And why would I feel that way now, after all these years? Stuff like this has never bothered me before, why now?


Anonymous said...

When I was pregnant, my OBGYN asked if I wanted to get tested to see if my baby had Down Syndrome and I got a little offended because I knew what that meant. They weren't giving me the option so I could be better prepared for it, they were giving me the option so I could abort the pregnancy if she wasn't normal. And it made me feel the same way. What they're saying behind their words sting. And it's the only time I really ever get offended. I don't care if people say the word retard or stare at us in public. That I'm used to. I'm also used to growing up with a perfectly normal sister who I would fight with and wrestle with and share fun times with. And isn't that what we all want? I ended up telling my OGBYN that I didn't want to take the test and if my child had Down Syndrome, then it would just be a happy surprise. :)

Rebecca Jo said...

Bless you.... I think Satan likes to put those little nitches & little thoughts in our heads to make us question things - especially our feelings. I totally understand your view on that... its totally OK to feel the way you did. You're Beth's mother & you never want anyone to ever doubt that she's not perfect to you & to our God who created her. ....I'm more super impressed you have made it this long without getting offended - that's impressive in itself & even more gives you a right to finally let something creep through to you.... I actually hope your post and/or your thoughts get back to the church because I think that's an eye opening thought. One, I'm sure the speaker never thought about - never to hurt or offend.
& I'm with you - all in this - I'm impressed with your sweet hubby with all the years of GIRLS everywhere :) haha
That's my husband - he's had 3 daughters. I think he doesnt know what to really do with 3 grandsons now :)

diana said...

I know that feeling. It's their own poorly veiled fear and laziness but it feels like betrayal - or at least betrayal-adjacent. That's why they say we're "strong" and "brave" for living with someone with Downs: deep down they know they don't have what it takes to endure the awkward stares from strangers, or the moments when you have to slow down a conversation to a painful tempo in order for her to keep up. It's cowardice being shown by people you thought were in this with you. It makes me feel, for a second, like a spectacle.

Cranberry Morning said...

Oh Cindy, I'm sorry that was such a deep hurt. I'm sure the people in your church love Beth. They've also seen the struggles. I suspect that you were also relieved when your next child didn't have Downs. But it is very hard having a child who is different and all the sudden you felt very alone. I would only suggest that Jesus totally understands that hurt, that your fellow church members didn't think how that might seem to you, and that Jesus takes all these hurts and cares upon himself for us. Goo bless you. I know I would have felt the same way if the situation had been with our FAS adopted son who looks like everyone else but had/has issues no one understands. It's hard. It was hard for years. But you've come this far by God's grace. Give it to Him. And may God bless you and heal the hurt. xo

Anonymous said...

When I was pregnant, I remember telling the doctor that I didn't want any genetic testing done. God gave us the baby, and I was having it no matter what. I didn't even find out the sex until she was born:-)

Heather said...

Your church story made me think of the Canadian Down Syndrome Society's "Anything But Sorry" campaign -- the video is adorable if you haven't seen it
It can be so difficult when people are conditioned to think that DS is a bad thing, even though that's such an old fashioned way of thinking. Sending love and strength your way.