So, this post I think made a lot of people think about the words that they said to me when Chase was born and the few months afterwards.
I want to clarify some things.
I don't think there is a right thing to say to anyone when they find out that their baby has Ds (or anything else, for that matter). After going through it, I still don't know what is appropriate. Honestly, I cried so many tears after Chase was born that I couldn't even tell you what they were for. My tears were frustration, disappointment, guilt, fear, loss...then as he overcame medical hurdles they were relief, joy, hope, anxiety...
Sometimes it comforted me to think that God had chosen Bryan and I to be parents of someone with different needs. Sometimes I thought maybe Chase didn't need "fixing"- we did. Sometimes it helped to think that this was random...sometimes I liked feeling "chosen".
There are a lot of cliche things to say. People say them all the time. But I don't necessarily think it's a bad thing. I would probably say the same thing if the tables were turned. Bottom line, I know that friends and family wanted to say Something, not knowing exactly how to convey their thoughts. And I don't blame anyone for that.
I also don't blame anyone for thinking, "Thank goodness my babies are healthy." Why would you NOT be thankful?!? Again, I would think the same thing.
So, please, my friends and family, please don't think that you said the wrong thing, or didn't say the right thing. Just that you were there and thought about us and tried to help means so much to us. I regret making you feel like you did something wrong.
If anything, Grace's post about this is really helpful...for the next time you may face this kind of situation. And read my comment back to her, because I really mean it.
I wish I could say this stuff more eloquently. I have three kids running around here and it's hard to really think this through, yet I want to get this out there now.
Thank you, my friends, for going on the journey with us. Thank you for loving and accepting Chase as your own. Thank you for your prayers and your words of encouragement. Thank you for reading and researching, for trying to understand. And last...thank you for not saying things like this:
"My friend's little boy is eleven and has Down syndrome...and he's potty training now!" Not helpful.
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- Laurie
- Wife to Bryan, Mom to Ian, Chase, Gavin, and Zeke. Down syndrome advocate. Literacy educator. Wine-drinking Christian. Keeper of chaos.
6 comments:
I thought about posting something on your response to Bleeber, but I didn't want to be one of the "T21 crew with pitchforks." :)
It's so stinking hard to know what to say... my mom, who has been awesome around our son, just bought him a shirt that says, "I still live at home." Which is really funny, until you start thinking about it. (Ian may always live at home.) She felt bad that we might be offended, which we weren't, but it just goes to show that it's so hard to know what should and shouldn't be said. Appreciate you chatting about it openly.
Ok Laurie, I love reading your posts. Part of it is that in some small way I feel like I am still part of your life vicariously through your blogs. The other reason is that there is story behind your blog and I'm very interested in it.
About Chase...I read Grace's blog about the things not to say and I felt compelled to respond.
So here it goes. Cliché madness:
I think you are special to have a son like Chase. Because I think Chase is very very special. And, I don't mean special in a "short- bus" kind of way. I mean special in that he is exceptional, lovable, and beautiful. I only met him once and held him for maybe 20 minutes, but I fell in love right away. (Um, I never even felt that way about my husband the first 20 minutes we met- shhh...don't tell him that).
I think you are strong. Not just because you have a son with T21. I think it because you are a woman, a mother, a wife, and a student. Did I mention that you do this all at once? That's not easy!
I think you are so lucky to have Chase- he loves you so much! And Chase is so lucky to have 2 wonderful and caring parents. I don't know if it's "God's wish" or if you were chosen or not but I do think you are damn lucky to have him in your life. Maybe I feel like this because I am childless, but if God gave me Chase I would not give him back! T21 and all, I would keep him. He truly is a gift. (I would take Ian, too. I don't mean this in a weird kidnapping kind of way. You know what I mean...you have 2 wonderful children!) :-)
I love children with Down Syndrome! I also love children with Autism. AND, I love "normal" children, too....But, I guess that is why I am a teacher. I love kids!
So with all that said I just wanted to make a point that there are some of us that are naive and make comments with no true malice behind it. It was refreshing to read your comment on Grace's blog to see that you are forgiving of those people like me.
Maybe you can write a book about it. You know something like "Stupid things people told me when I gave birth to a child with T21." I'm sure I have a load more stupid comments that I can supply you with. I'm available to offer my services to you at any time. :-)
Tom- Thanks for not being part of the pitchfork-wielding T21 community...though I think their services are justified sometimes..
If we can't laugh at life, then we'd be crying all the time, right? I still want to get Chase a shirt that says, "I have Down syndrome. What's your excuse?" But I don't know if everyone would think it's as funny as I do.
Suzanne- Thanks for your thoughts. I don't think any of your comments are stupid. I'm just saying that I don't think there is ever a perfect thing to say when parents are going through their initial reactions. And I know that NONE of my friends (even Bleeber- love you!) would say anything with malicious intentions.
I definitely could not write that book, as I have heard some real doozies from other parents. The closest we came (and it was kind of funny) was when someone, upon hearing about how well he was doing in therapy, asked if the doctors "still think it is Down syndrome?" Uh, yeah. That pesky chromosome is still there...in every one of his cells...
I also want to make it crystal clear that I don't feel like I would be better off without Chase...yes- I would give back the month in the NICN-- not being able to hold my child, to sleep next to him, to nurse him-- the feeling of not knowing if he was going to come back from surgery (and he didn't even have open heart surgery-- I can't even imagine what parents go through for that). But even then, now that I think about it, you don't appreciate the view from the mountaintop if you haven;t been in the valley (or something like that...right?).
So as much as you want to kidnap him, you psychopath, you may NOT have him. :)
shoot....he's so cute, too. Oh well, guess I'll have to try and procreate on my own one of these days...
Laurie- I hope to be half the mother you are when (if) barry and I have children. I love you. I love your children. Everytime i read a chase/ian story, it makes me want to post "I can't wait to see them again!" They are amazing, as are you. Thank you for writing your paragraph about Chase in Grace's blog comment. thank you for your blogs. I don't get to read them everyday, but i truly enjoy them and feeling like a part of your family when i do. :)
And I can't wait to see you and the boys in July!!!
I came accross your blog when I googled Brad Heffener....he is from my hometown and I'm very proud of him and his accomplishments (athletic and otherwise). I've been reading many of your posts....your musings are important. The thoughts of a Mommy are always important to hear.
Your boys are beautiful.
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