Saturday, March 27, 2010

A Balancing Act

I have a situation that is kind of bothering me, and I need to get it all out on "paper" to help me sort out my feelings. 

I work in a small office.  There are only 6 of us.  I've worked here for 10 years, go to church with some of my co-workers, and consider others very good friends.  We found out about Claire's heart defect when I was 29 weeks pregnant, and thus the 50/50 odds of her having DS. I told everyone what was going on.  I also emailed extended family, and friends that didn't live close by.  Part of my reason for doing this was because I wanted to give everyone, me included, time to adjust.  I didn't want to hear "I'm sorry" if the diagnosis was confirmed.  I didn't want anyone feeling sorry for us. 

Fast forward to Claire's arrival...and the confirmation that she has DS.  I emailed friends and family to tell them the wonderful news.  That Claire was here, perfect and beautiful, and sporting an extra chromosome.  The outpouring of love and prayers was immediate.  I never heard "I'm sorry", and I hope nobody thought it. 

I am Claire's voice right now.  I am constantly reading and researching, trying to keep up with therapy, and make sure she has every advantage we can give her.  I feel like I am constantly thinking about Down syndrome, not always in a worried way, more like I just need to be prepared.  I'll read something interesting in an article or blog, and will often find myself saying "babies with Down syndrome....".  DS is always in my thoughts.

What has me bothered, is that except for one friend, I don't know that Darren has ever said "my daughter has Down syndrome".  Nobody he works with knows.  They knew there was a possibility.  They know we had lots of  doctor appointments, and the know about her heart defect.  But they don't know she has DS.  Claire has been by his job and met the girls in the office, but at this age they couldn't tell.  I worry that people will think he's ashamed of her because he didn't mention her DS.  He's not ashamed of her, not even remotely, but I worry that's what people will think. 

After I get all this out, I wonder if my discomfort is jealousy.  There are times when DS is all consuming for me.  It's all I can think about, and it doesn't seem to be this way for Darren.  I can pretty much guarantee that while Darren's at work he's not thinking about if we should be doing more therapy with her or not.  I guess what this means is that I need to pray for balance.  I need to do what is best for my daughter, while not letting therapy and general DS worries interfere with my time and enjoyment of just being her mommy.


  1. My husband was the same way. Our little one is 9 months old now and he is just now comfortable talking about it. I just remained patient with him and eventually he told his friends. I think they already knew, but it was important for him to have a guy to guy moment about it and he did...about a month ago. He doesn't pour over DS like I do, but he does and has been dealing with it in his own way. So, my advice is to be patient. Continue to talk to him about what you're learning and share your heart and know that in time, he will most likely start sharing his.

  2. Hi there! I've been following your blog for awhile, but not sure if I ever commented before. reply might be of epic novel length. LOL

    Anyway, I'm Leah, mom to Angela who is 13 and has DS. What often happens for new parents is when mom is up, dad is down, and when dad is down, mom is up. Does that make sense? Which one of you has been primarily dealing with the extra doctor appointments? The extra hospital stay? Usually it's mom, and it's natural for moms to think about things men don't. Or to at least express it differently. You might talk about it all the time, while your husband hardly mentions it. Some of that has to do with the difference of men and women. We talk things out, men don't. Not even with their buddies. As women, when OUR friends ask us how the baby is doing, we answer with all kinds of details, and our friend keeps asking us questions. Why do you think most participants of online parenting forums are women? LOL

    When a man's friend asks, the conversation goes more like this, "DUDE! How's the diaper changing going?" New father replies "Ha! All she does is poop!" and then they get on with whatever it is they met for. Why? Because men don't WANT to know the details, NOR do they want to discuss them. How many DADS write blogs? Compared to moms, it's next to none. It's a welcome change when you do find one, but even when you do, they don't go into the same details moms do, right?

    Most of the time, new moms will say they go to bed at night thinking of DS, and it's the first thing they think of in the morning. This was true with me, and I had 4 other kids to think about! It doesn't help that she's your first baby, and you don't have other kids to focus on.

    You won't FIND a balance. You can pray for it, and go to all corners of the earth to find it. But you won't find it. Do you know why? Because you have to GROW into the balance. Eventually you will find a balance, but know it can be easily thrown off when a health crisis comes up, or some situation happens that stirs those emotions again. But, there will come a day when you haven't really thought about DS all week.

    Guess what? My daughter is 13 now and her dad doesn't know HALF of what I do about DS. Granted, we divorced when she was 5, but still! When we were married, he just wanted to be her dad, and not worry about the other stuff. I don't know that I've ever heard him say, "My daughter has Down syndrome". It doesn't really matter though, does it? What matters is that he loves his daughter. Who cares what people at Darren's work do or don't think? You're not working with them, right? And, apparently it doesn't bother him, so try not to let it bother you.

    You're the mom, it's your job to worry. God made us the emotional head of the household for a reason!

  3. Oh, this is so, so normal, but first:

    CONGRATULATIONS! She's beautiful.

    So, for me, it was a long time coming before I was all chatty about Ds. Thankfully, my husband was able to balance me out. As Leah mentioned, you'll do that for one another, switching places and then switching back again, as time goes on.

    Blogging, for me, was my big annoucement. It was therapeutic and necessary. I said that for my daughter's first birthday (!!), I wanted to give her the best gift I could imagine: A mother who was no longer afraid.

    It can take time, but it's ok. As long as your husband is ok, how and when he shares the news is secondary.

  4. Congratulations on your beautiful daughter!

    My daughter with Ds is 12, but I can easily recall the mixed up feelings that first year of her life. Sometimes I describe it as The Diagnosis--it seemed that 90% of Hannah was Down syndrome, and only 10% was my little girl. Gradually those ratios reversed, and now I am barely aware that Down syndrome is even a part of her (not completely, but it doesn't enter my mind very often).
    Everyone processes things differently and at different rates. Both you and your husband will have different ideas and feelings about the diagnosis. As long as you keep communicating with each other you'll find a path together.


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