I often have moms contact me who have just received a prenatal diagnosis of Down syndrome for their unborn baby, who have read Lily's birth story and are just now experiencing some of the emotions I felt in the beginning. It's so hard to "transfer" my present acceptance of Lily's diagnosis to a new mom, because I think most moms (though not all) do go through a time of grieving the child they thought they were carrying. I think that's normal.
But....if I could go back to my pre-Lily self and somehow convey to her that it really is going to be okay...there are some things I would love to tell her. Things I wish I had known ahead of time, that would have better prepared me for her arrival.
One of those nuggets of truth?
You're giving birth to a BABY. Not a diagnosis. Not a syndrome. Not a volume of medical information. She's a baby first and foremost, and no matter what "facts" you learn about Down syndrome, none of them take away from the FACT that you have a beautiful baby to enjoy....so enjoy her.
And also...trust your instincts. If you have a desire to breastfeed, ignore the people who tell you she can't. Or won't. Don't accept everything you're told about your baby by "professionals", and don't allow your standards to be dictated by what you read in a book. If you have a goal, be reasonable, but trust your gut feeling when it comes to your baby...just as you would any baby.
I had a nurse in the NICU discourage me from breastfeeding after Lily was born. At every turn she tried to prove to me that Lily couldn't and wouldn't breastfeed. When I calmly and firmly told her that I had successfully nursed nine other children, she informed me that "Lily isn't like your other babies, Mama." Never mind that this nurse had never raised a child with Down syndrome. She was already biased in her opinion of babies with special needs, and she felt it was her job to convince me that Lily was different. I wish now I would have had the wisdom...and the boldness...to tell her that I was the parent. Lily's parent. And that whether I breastfed or not was my call, and not hers.
Thankfully, after leaving the NICU and bringing Lily home, Lily learned to nurse. I trusted my instincts, talked to many parents of babies with Down syndrome who had walked this way, and we met that goal. And she's still meeting that goal today ;)
So many more thoughts I have on this subject, but I'll save it for another post...for now, I'm curious: if you could give advice to a new parent of a baby with Down syndrome, what would it be? What have you learned on your journey that you wish you could tell your past pregnant self ?
I'd love to hear your thoughts....