Tuesday, September 11, 2012

what would you say?

I had a conversation this morning with Lily's therapist that sparked some thoughts. I was reflecting on Lily's birth and the week that followed, and remarking about what I know now about Down syndrome....and what I would have done differently had I possessed that experience and knowledge then.

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.

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....

18 comments:

Becca said...

You're so right about having a hard time putting yourself into the shoes you were in before Lily was born when looking at a diagnosis of Ds. What our current reality is is absolutely *nothing* like how we felt then, and it's hard for me to remember that when talking to new parents. I tell them that they've got lots of information to learn and absorb, but that they should love and enjoy their new baby first, the rest will come when they're ready. That it's *okay* to feel however they are feeling, not to deny any of it, not to feel bad for any of it, and that it won't last. That there's no time limit on acceptance, but that one day they'll look back at these days and marvel at how different they feel, how amazing this child is, how much they've learned and been enriched by this presence in their lives.

babypelly said...

It's only been 2 years but it's hard to remember for sure! Abby's a little person now... a little person I could never have imagined two years ago. I look at her newborn pictures and some of the feelings come back - I remember what it was like to not know much of anything about who she was or who she would become. I was scared and heartbroken and scared... and scared. I feel like both she and I have come so far - neither of us are who we were the summer of 2010.

babypelly said...

It's only been 2 years but it's hard to remember for sure! Abby's a little person now... a little person I could never have imagined two years ago. I look at her newborn pictures and some of the feelings come back - I remember what it was like to not know much of anything about who she was or who she would become. I was scared and heartbroken and scared... and scared. I feel like both she and I have come so far - neither of us are who we were the summer of 2010.

csmith said...

I wish I could tell other moms ( and my "before" self). Your baby won't be stupid. I was prepared to love my baby no matter what, but it did sadden me that she would be the least smartest in a family of over-achievers. I couldn't have been more wrong. Does it take her longer to learn some things? Yes. But, she has to work so much harder than the rest of us have ever had to. She figures out ways to accomplish things, that never would have occured to me. She is sooo smart. I would have loved her sweet, spunky personality no matter what, but I should have never assumed that she wouldn't be smart, she outsmarts me on a daily basis!

cara said...

I didn't know Benji had down syndrome when he was born. And it was a very relaxed home birth, which was such a blessing because I did not have any negative comments or concerns from the medical community. I realize that there are risks when children have down syndrome at birth, etc. But we had prayed and prayed, and the Lord led us on the path for this home birth. He obviously knew the outcome before we did, and knew that Benji would not need any medical intervention at birth. Not knowing when he was born helped me treat him like all my other babies. I honestly did not recognize any signs of Benji having down syndrome that first early morning. He would not nurse right away, and I thought it was odd. But I just kept trying and trying, and sure enough, he was nursing like a champion by that day. You gave wonderful advice Patti. I would also tell mothers to see them as a baby first, not a diagnosis, not see them as down syndrome. They are a precious baby, a gift from God. I love how you tell mothers to enjoy them. I also wish they could understand how much this extra chromosome is going to bless them beyond words. Their cuteness is just too much to handle. They may not understand that right away if they are mourning the diagnosis, but they will soon understand what that means, so hold onto that!!! I would encourage them to research and get information, but also talk to other mommies with kids with ds that have things in common with them. Do not just rely on the information from the medical community and therapists, etc. They can be helpful, but find a group of moms that will encourage you, have been there, will lift you up, and cherish these children. Talk to people that have good things to say and focus on what is good. I am not saying to deny a medical condition or fact that may be true for their child, but to focus on what their children CAN do and believe in them for everything if this makes sense. I had some people tell me how difficult Benji would be, how challenging he would be at two when he was a baby, etc., etc. Those comments do not uplift or encourage. Don't dwell on those comments at all. And he is really one of my easier kids. He is smart and funny and able to DO so much.

Great post Patti!! And thank you for sharing ALL of Lily's cuteness!!!! xoxo

cara said...

Oh, I had to add one more thing! You look absolutely BEAUTIFUL!!! And I know I have said this before, but you look WAY too young to have married kids!!!! xoxo

Sandryte said...

I would tell myself, that "You will love him like no other! And if you think that his is less than something you dreamt of, then you are sooo wrong! You should have bigger dreams, girl". What I wanted to avoid after hearing the diagnosis was also the fact that we will go from one doctor to the other, from one rehabilitation to the next - I did not want to have anything in common with them. But you take ONE step at a time, which is not scary at all, and it is a big pleasure, a gift to take care of your child in every possible way.

And leave stereotypes aside. They have nothing to do with your child! Once one so strongly believed that white person is superior to the black. Who would be the subject of jokes now?

Sandryte said...

And when you want to compare and judge, be critical to yourself. You have ALL THE ABILITIES in the world. Do you know more than 2 languages? Can you navigate the plane? Have you built at least one bridge in your life? Are you a CEO of the company? If one of the answers were NO, I smell a little disability in here.. Or shall I say, LAZINESS? Because you have EVERYTING and you are ABLE of so little :)

Mrs. K said...

Love that Mother/Daughter picture. You are both so BEAUTIFUL. Am I prejudice? I don't think so. Am I proud of you both for what you have brought to the DS world and to you family? You bet I am. Give my Lils a huge hug and kiss from Grammi.

Lisa said...

Have high expectations - you never know what your child can do until you both try for it. Don't worry about being disappointment because even if your goal is walking by 18 months and she doesn't walk until 24 months - you will still be the proudest mom on the block the minute you see that smile of triumph.

Lisa and Dave said...

What would you say to someone who wants to adopt a child with down syndrome?

lovemy3 said...

I would tell myself that life will be "normal" again quicker than every imaginable. Our life has changed, yes, but who's life doesn't change when adding another child into the family? She fits in our family perfectly. There is more laughter and love in our life than ever before!

eliz said...

I was 47 when I had my last child. I thought for sure he'd have DS. Our Susie in our Group Home with DS had passed a month earlier. I thought God was sending me my own little baby with DS now! But he did not have DS. He was however the hardest child I ever nursed. (out of my 4) I was discourage left and right by Drs and nurses, but I did not quit. I did have to supplement with a bottle, but still I nursed him until I became ill and could no longer nurse due to medications I took- he was 11 months.
He does have Dyslexia~ LOL! Which has nothing to do with nursing, but he's my first child with Dyslexia. :o)I say nobody's perfect. And you hit the nail on the head~ you are having a baby first, not a diagnosis. Babies are gifts from God!!

Christi Harrison said...

Jimmy breastfed as soon as they gave him to me. I didn't know that it was discouraged for some. So sad. I actually thought it was harder for them to take a bottle. Funny how that happens. I don't know what I would say except that there is a good chance this child will be your favorite! Enjoy him or her!

shantijoy said...

I had the blessing of working at Camp Barnabas with kids with Down syndrome prior to having my daughter with Down syndrome.

So I was joyful upon her birth. Meeting a child with Down syndrome makes all the difference.

What I have always said to new parents is, 'Congratulations! Your life just got better, and you will never be the same.'

Race Bannon said...

I wouldn't have been so down, don't matter to me.

Liz said...

My daughter doesn't have DS, she has another rare genetic condition. Anyway my advice would be just to hang on and trust that there will come a day when diagnosis is irrelevant. It may take awhile but eventually you'll get there.

Maria said...

Stunning picture of you two. She's lucky to have you as her mama