Before you read this...Know that as a mother who also happened to be pregnant at the same time,I didn't know how to handle the news of Chase's diagnosis(T21).I am pretty sure I made every single mistake this woman's blog says NOT to make.
I know I said all the wrong things and that Laurie probably wanted to punch me in the face as I tried to comfort her while I was embracing my "perfect" new baby. I wanted to be that strong,uplifting friend,always with a smile and an encouraging word-when in reality I was broken,thanking God for my blessings,wondering the what if's,sobbing constantly yet trying to show how strong I was.why?
(I don't know how to do that cool thing Laurie does where you just type a word and when you click on it magically it takes you to that web page. So I just copied and pasted.)
What to Say When Your Friend’s Baby Has Down Syndrome By Katrina Stonoff
It’s very simple. Here’s what you do and say:
First, bring a gift (a receiving blanket, an adorable outfit, a rattle). Second, say “Congratulations!” or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.
Having said that, realize your friend might be grieving. All parents have to grieve the loss of the perfect child they thought they were having, but most people get to do it in tiny increments spread over several decades. With Down Syndrome, you know right away that your child isn’t the athletic brain scientist with a model’s body that you thought you were having. But if you accept the baby with joy, it will be easier for your friend to–even if she thinks you’re nuts at first.
If you have positive experience with Down Syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it. When our daughter was born, our family practitioner told us he’d grown up in an isolated rural area, and his only playmate had Down Syndrome. The boy was born to an older couple who had long given up hope of having children, and he was a joy to them all his life. To my doctor, growing up as his best friend, he was just John (or whatever his name was). This was very comforting to hear.
If you don’t have personal experience, check out this entry, and then you can say, “I just ran across a writer’s blog, and she has a daughter with Down Syndrome who is just adorable!” (She really is adorable–go check her out!)
Give them a copy of Kathryn Lynard Soper’s book Gifts. Because Gifts tells the stories of 63 different parents, it’s a chance for your friend to meet 63 people who’ve already been there. And because it’s in a book, which she can take in little or big pieces, as she wants, it’s even less threatening than having to meet them face to face.
Your friend may be dealing with life-threatening problems (babies with Down Syndrome often have heart defects, for instance). Here, you might be able to help. Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.
Try to get the terminology correct. In the U.S. it’s “Down Syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down Syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have DS.
If there is a Down Syndrome support group in your area, get a contact number for your friend. But don’t be surprised or hurt if she doesn’t contact them for a long time (or at all). Everybody has different needs.
Mostly, your friend just needs to know you love her and that you will love the baby too. She needs to know you aren’t going to run away and hide. And she might need to borrow your optimism (if you don’t have any, fake it).
Finally, there are a number of things NOT to say:
“You’ll be fine because you’re so strong.” First, you don’t know that. Second, your friend doesn’t feel strong right now, and this heaps impossible expectations on them. Third, we (parents of children with DS) are no stronger than anyone else. Strength develops in crisis; it wasn’t there before. Trust me: if you are blessed with a baby who has DS, you’ll develop the strength too.
“God sent you this special baby.” First, you don’t know that. Second, as a parent hearing that from a friend, we tend to hear a subtext tacked on: “and thank the Lord he didn’t choose me!” which makes it a backhanded compliment at best. Third…oh never mind why it’s offensive, it just is.
“They’re all so sweet!” (or loving or good or happy or whatever). If you find yourself saying “they all…,” stop! First, it feeds into the they-versus-us mentality. Second, the DS population is like every other population, and “they” aren’t “all” anything. Some people with DS are sweet; some are surly. Some are happy; some are depressed. Etc. (As I said before, however, if you have personal experience, it’s absolutely acceptable to say, “I knew so-and-so, and she was really sweet.”)
“Don’t worry. The baby will be fine.” Again, you don’t know that. Babies with DS face enormous physical challenges, and some of them don’t make it. And Down Syndrome is a pretty wide spectrum: while the vast majority of people with DS are mildly mentally disabled, some are profoundly disabled, and they won’t be “fine” by the standards a brand-new parent holds. False hope is false hope, no matter how lovingly it’s given.
“Oh, dear. She’ll never be able to _________” (fill in the blank: walk, read, drive a car, live independently, get married, etc.). First, you don’t know that (hmm…this is beginning to sound repetitive). Second, it’s probably not true. Until very recently, most of the research on Down Syndrome was done on a population institutionalized at birth. So any statistics older than 10 years or so are probably grossly pessimistic. Third, even if it were true, it’s too much to take in all at once. Unless you can tell the future and never get it wrong (joke!), don’t make any prophecies about the future, positive or negative.
Last, do not (do NOT!) use the word “mongol” or “mongoloid” or “retard.” I know it’s hard to keep track of the current phraseology (I have trouble with it too–is it mentally handicapped or mentally disabled?). But these words are as old (and as offensive) as the “N” word.
I suspect I’ll think of many more things well-meaning people have said that hurt, but this is a good start.
In general, be supportive. Express love. Accept the baby. You’ll do fine. The very fact that you bothered to look this up tells me that.
4 comments:
Grace. Thanks for this post.
BUT I want you to know that I never felt the need to punch you in the face while you were trying to comfort me :)
The way that you handled Chase's diagnosis with me was awesome. The email dialogues that we had helped me work through a lot of emotions. The way that you asked questions about Chase and his diagnosis, about my feelings, and how you even researched things for me to read helped so much. Yes, some of the things that you said made me cry...but everything made me cry in those first weeks (months?)- and I knew that you were crying with me, too. Damn. I'm crying again now!
You DROVE FROM FL WITH 2 CHILDREN to walk with us in the Buddy Walk. You raised 25% of our donations by yourself for The National Down Syndrome Society. You took pictures of Chase like he was your own while you were here. You went above and beyond to support us, and I love you for that. (Now I'm crying harder!!! Damn you Grace.)
I knew that you were trying as hard as you could to understand what I was going through, and that is what makes you a good friend. And I don't fault you for thinking about how lucky you were to have a healthy baby. I would be thinking that same thing. Because as much as I love Chase, there are things in his life that I am not looking forward to...and I would take away that month in the NICN in a heartbeat. It was the hardest thing I've ever had to do. I wouldn't wish that on anyone.
I would be totally lying if I said that it isn't difficult (even now sometimes) to see/hear about Avery. I don't know if I'll ever get to the point when I don't compare Chase to others-- its something that I hate doing, but I can't stop. Seeing Avery sitting up in bed makes me think about how Chase isn't doing that yet...seeing pictures of Ian pulling to stand and cruising along furniture at Chase's age makes me wonder when he's going to do that... It's not your fault- you should be proud of Avery and how she's growing up. Sometimes I just have to kick myself in the ass to get out of that line of thinking, and stop to realize what I do have.
I have a baby who loves Cheerios. He has a healthy heart and scars from a successful surgery. He loves sitting and watching, banging on his toys. He loves touching my face and pulling my hair. He loves it when his brother smiles at him. He listens to stories, he beams at me when he sees my face. He babbles "ma ma ma ma ma" like a champ. He almost always wakes up happy. He has a funny "trying really hard" face and a boo-boo lip that melts my heart. He loves to be cuddled, he lays his head on my shoulder when he's tired, he thinks it's funny when he gets stuck on his belly and swims on the floor. He giggles when I lift him high in the air and when I nuzzle his fat cheeks. He makes everyone he meets smile. The daycare ladies at the gym won't put him down. He hates it when I pick his nose. He has really good aim when he spits up on Daddy. He is spiritual in a way that I can't describe. He teaches compassion. He makes us all better people.
You helped me get to this point.
This turned out to be a gigantic comment. I thought about just emailing you, but I want everyone to see what a positive force you have been for me through all of this. Thank you, thank you, thank you. I am proud and lucky and blessed to have you as a friend.
And she feels burdened by having me as a friend as shown by the T21 army marching towards me with pitchforks.
That is so not true, Dave, and you know it.
Hi. I'm the mother who wrote this article. Thanks for reading it. :-)
Grace, it sounds like you were amazing! Like Laurie said, new parents are crying no matter what you say, and you were wonderfully supportive. It's the support that matters most. You certainly don't need to feel bad for having a typical child.
Laurie, my daughter is 10, and I still catch myself comparing her to her peers occasionally. I can't help it. The difference is that I don't mind any more. I *adore* my child, exactly as she is, and I wouldn't have missed her for the best, most perfect baby ever created.
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