Wednesday, October 20, 2010

In all honesty, bring out awareness

This post is hard to start. I have some anxiety over it. But, since it is Down syndrome awareness month, and out of respect for Calvin, I feel like I should address some serious things about our journey thus far. Please remember, this is strictly me speaking and does not reflect anyone else.

If you've had a chance to visit the online Down syndrome group I mention periodically, you'll know it is a place to post comments or questions and ask others to reply, or reply to other's posts. One mom recently asked a question about how honest we (mothers to children with Ds) were about our feelings. I guess I'd say I was about 50% honest with most people. I'd like to share a bit more about that and where I am at today.

The night Joe and I found out Calvin has Ds, I could not even finish the phone call with the genetic counselor. I was crying too hard and handed Joe the phone. I felt like a jerk with how I treated her but I'm sure she understood why I could not even say 'good-bye'. I was mad at her. She said it like it was no big deal. She had a sweet voice. I felt sick to my stomach. Joe, who was diagnosed with Lyme disease a year ago, was going to a support group in Amery to deliver some information on a new test his company is running (he took my blood last night to use me as a test subject and I sure hope it comes back negative, which I think it will). I encouraged him to go. He was mad. I was angry with him because I wanted him to be positive - he was all week as we waited for the results. I did not want that around me as well. It was too much for me to handle.

I called my mom and she and Dad came over. I cried. I told her I felt like a failure. I did. I felt like I was better than that! We were better than that! Joe and I have cute, smart boys who are full of life, and we were going to add to that how? Joe's mom called, not knowing we had found out. She showed up in tears as well. But we sat there talking about things like "your boys are going to be better men because of this baby, and so will Joe". I was not really ready for any of this. I wanted someone to fix it. I felt like no one could understand since it wasn't their kid.

I cried myself to sleep and cried myself awake. It was one of those things where I woke up feeling yucky and it took a second to remember why. We've all had those moments. We want to believe it was a dream or it was resolved in some way while we slept.

I went to work. I couldn't stay home. I cried to our wonderful daycare provider. I told a co-worker that I hated my life. I had about 1% tolerance for the kids at school and their "petty" issues like "I thought we could eat lunch together today". I cried to my boss saying I felt so sad about wondering what the baby would have been like without Ds; like he was one way, and then this happened and changed him (though I understood it doesn't work that way).

Time went on. It was hard but got much easier, starting that day and night when my sister-in-law told me a bit about her husband's cousin who has Ds. She told me about how he sits around the campfire and drinks a beer with them. He stays home alone when his parents go to the cabin. He can make his own meals AND their other cousin absolutely loves him! I started feeling more optimistic, like I could live with this.

Fears kicked in. I wanted to think my baby was cute. I didn't want him to have glasses. I didn't want him to be short, or have slanted eyes. Basically, I didn't want him to look like he has Ds. Later that summer, a man at the grocery store told me "you have a beautiful family". I thought "I wonder if he'd think so if he knew this baby has Ds". I didn't know if I would think so, is the thing.

So far, I've been about 75% honest with you and I have contemplated ending there, but won't.

After finding at about Ds, I thought it wouldn't be so bad if he didn't make it due to his heart condition (it is taking all my mite not to delete that sentence).

I didn't feel pregnant. I didn't think I should buy anything for him or talk about pregnancy things (like how I felt or being tired or what he would be like). If I did, there was this voice asking "who are you kidding?" (that was the devil by the way). However, I wasn't about to jeopardize his health. I actually wanted to keep running to strengthen his heart which is why I know in my heart I did not mean what that "other" sentence implies.

Fast forward 6 months to today (yeah, 6 months already!!). I am loving how idiotic I was. How flat out ignorant and repulsive I was. I am sitting here, while the sweetest boy I've ever known is batting at toys and making noises to let me know how he feels about life. At times he's upset, like when he was waking up in his crib while I finished pumping or at other times when he's just content being here. It's like he knows this is where he belongs. I know it, too. Or, he wouldn't be here.

By the way, I do think Calvin is cute as can be and I could care less if he needs glasses. I could also care less if other people do not think my family is beautiful on the outside. I think they do though. It is that phenomenon I spoke of while his "aunt" Pat held him. People are drawn to Calvin. I hear so many comments about how adorable, sweet, and beautiful he is. "He's a doll. Look at those eyes. Etc, etc." People want to be around him, to hold him. He is someone I can only hope to learn from.

I am dreading heart surgery because I don't want to be away from Calvin for even a moment. He and I have so much to do together, I get butterflies thinking about it!


  1. Thanks for being so honest about your feeling, I cried reading it as well. Your family is beautiful! I have said it more then once....your family is blessed to have Calvin in your lives.

  2. That is very sweet Cheryl. Thank you for your support, as usual.

  3. Oh, and I realized it has been 5 months, not 6, oops :)