Share on FacebookShare on Google+Tweet about this on TwitterPin on PinterestEmail this to someone

Untitled

1) This is not the end of the world. It’s not even the end of the world as you know it. In a few months, it will surprise you how little you think about Down syndrome.

2) You aren’t special. Or chosen. You weren’t given a special child because you could handle it. I don’t mean to burst your bubble, I want to lift you up. You don’t have to be Supermom, you just have to be mom.

3) There are some medical things that are going to become pretty important. If you haven’t already, soon you’ll start seeing a MFM for more and better ultrasounds to keep an eye on your baby’s growth, a cardiologist for a fetal echocardiogram to look for and plan to treat a congenital heart defect that is common in babies who have Down syndrome, a geneticist or genetic counselor to learn about Down syndrome and do your baby’s karotype, and you might start BPPs (bio physical profiles) and NSTs (non stress tests) to keep an eye on your baby toward the end of your pregnancy. I know that sounds scary and overwhelming. And it is, it’s also exhausting. But it doesn’t last forever, soon your baby will be here in your arms.

4) YES you CAN breastfeed your baby! A lot of people will tell you that babies who have Down syndrome will have trouble nursing. They should tell you that they MAY have trouble nursing. And they may not. It’s a great idea to be proactive, especially if this is your first baby. Go to a few La Leche League meetings, talk to a Lactation consultant, read The Womanly Art of Breastfeeding. Grab a nursing pillow and stock up on some nipple cream. You can do this.

5) Some people are awful, mean, ignorant, spiteful, rude, and hateful. I’m sorry. I don’t have advice about those people because they make me mad and sad too. Hurtful comments and language should be a thing of the past. I wish I could tell you it was.

6) Some people are well meaning, loving, caring… And still can be hurtful. They don’t mean it, and they wouldn’t be if they knew better. Try to remember the difference between the well meaning and the spiteful, and give the former a break. Your friends and family want to be supportive, but odds are they are as lost as you are, and it’s going to fall to you to teach them how to support you.

7) Find community. Find a local group, we love our local Gigi’s Playhouse, find a Facebook group, go to babycenter and find both Down syndrome and prenatal diagnosis groups. It’s nice to know people who just get it.

8) Feel your feelings. whatever they are. It’s complicated and it’s okay. Are you feeling sad? Angry? In denial?  It’s so normal, give yourself a pass on adding guilt into the mix. You won’t feel so lost for much longer.

9) The Internet is full of great stories and YouTube videos that will bring tears to your eyes AND put a smile on your face. Just don’t read the comments! (see #5)

9) Resources! Start here at www.downsyndromepregnancy.org There’s a free downloadable ebook with so much information, tips on how to deal with comments, how to tell family and friends, and even a grandparents guide to help them adjust.

Congratulations! I’m so happy for you, you are so lucky! I mean that, Down syndrome sounds like such a big thing when you first hear the words, but really, the similarities vastly outweigh the differences. Your baby will eat, sleep, poop. Give hugs and kisses and snuggles. Laugh and cry. And you will too. Welcome.