Monday, November 14, 2011

what to expect from your baby with down syndrome

Dearest Lily,

In just a few days you'll be twenty two months old.

And at the risk of sounding like a broken record, I have to say that these past 22 months have been an eye-opening experience for a seasoned mama of ten.


If I were to go back and read all of my letters to you since your birth, I'm sure I'd find a constant theme: I never knew what having a baby with Down syndrome meant.

Admittedly, I had a lot of preconceived notions of what life with an extra chromosome might spell out for us. I don't really know where those ideas came from entirely, other than casual contact with those who share your designer genes, and memories from my childhood of a summer spent helping your Grammi in her "special ed" summer program. Those real life experiences, combined with outdated ideas about what the future could hold for you, probably helped cement in my brain a stereotype, so to speak, of people with special needs.

My pre-Lily way of thinking at the very least included a sort-of resigned acceptance of a possible diagnosis of Down syndrome, and at the most, hidden regret and fear.

Because it's very easy to be lying on an exam table in a darkened doctor's office, watching the technician hesitate as she waves her wand over my extended belly.... and measure and record and measure again...and think "I can handle a baby with Down syndrome. I will love whoever God gives me, and every baby is a blessing, no matter what."


But it's quite another thing to take that reality home with you: a bundled up newborn in one arm, and a stack of papers and books and information pertaining to the struggles she will now face, in the other.


And here is where I come back to the theme that is evident in my letters to you, a thread woven throughout 22 months of journaling to my sweet baby girl: I didn't know what Down syndrome really meant before you.






Because there was something missing in that armful of pamphlets and copied sheets of information sent home from the hospital; something missing, sadly, even in the words of health care professionals handing us that mountain of paperwork, perhaps even in their tone of what to expect from your baby with Down syndrome...

What they forgot to tell me, maybe didn't even know themselves, is that in so many respects life with my new baby was going to be so very familiar, so very typical and natural, that if I didn't have that stack of information on my nightstand, I might just think my baby was  ...normal.


Are there differences between life with an extra chromosome and life without? Absolutely. I could fill this letter to you with those differences both subtle and great, from the challenge we faced in breast-feeding in the beginning, to the low muscle tone and loose joints that contribute to the fact that you are just now taking  your first steps in life.


But just as easily, I could fill this letter to overflowing with all the things you have done and are doing, that make you "more alike than different", aspects of your personality and personhood that have pried loose that old stereotype and sent it spinning on its side...

The way your drowsy smile spreads across your face in the morning like sunshine...or how, with tiny fists, you rub the sleep from your eyes, grinning all the while. The way you reach your little arms up to be held and instantly burrow into me, your thumb in your mouth as your other arm curls around my neck...

The way you prefer your oatmeal warmed just-so, not too hot and not too cold, and absolutely must have plain-jane Cheerios alongside to nibble on. No honey-nut or apple-cinnamon cheerios will do, because detective Lily knows the exact flavor of her favorite cereal snack, instantly spewing out impostors in disgust...

The fact that you love your favorite toys: your ancient doll house and modern musical kitchen, your flashcards and rocking horse and most of all, your baby dolls...


You cuddle them and kiss them and rock them to sleep, you wrap them in blankets and sing to them and pat their little backs as you bounce them on your shoulder...




...and promptly dump them on the floor when you're done :)

And I could go on and on in describing what life with an extra chromosome really means: bubble baths and bedtime stories, slobbery kisses and afternoon snuggling, the way we lock eyes while I'm rocking you to sleep, and the words that are so evident in those star-studded pools of blue, staring back at me: I'm yours.


I could fill a thousand books with what to expect from your baby with Down syndrome, but mostly it's just this....



...expect to be amazed.

Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning. James 1:17




Always yours,

Mama oxox


26 comments:

NikkiB said...

Oh girl...those are some beautiful pics!!! I love the one in black/white w/ her cute hat on!! But, the sleeping ones melt my heart too!! So precious!! :) :)

Wren said...

Beautiful post Patti! Can you believe our babies are just a couple short months away from turning 2?!

Lily is as cute as ever...love the hat!

Leah said...

love this post!

Day to Day Mama said...

Beautifully written! And she is just so cute!!

Marci said...

What beautiful words for your sweet Lily!

Jennifer Scott said...

An absolutely beautiful letter to Lily. <3

Team Lando said...

Beautiful letter, and OH MY GOSH she is so stinkin' cute! We have the same cards, but Ellie just eats them :) I love the pic of Lily sleeping butt-up! I just want to hug her!

Deanna said...

beautiful, as always and SO TRUE!

Cindy said...

Beautifully written. And very true. I loved this.

teal915 said...

I just finished reading the book A Good and Perfect Gift by Amy Julia Becker, so this reminded me a lot of it. You should check it out. It's a good book. I just started The Year My Son and I Were Born.

cathy said...

Beautifully Eloquent from YOUR heart


xoxo
cathy

Mrs. K said...

Lils, your hair is getting so long. How can you possibly get any cuter?!?!? You play with your baby dolls just like Mama and Aunt Hopie did, only they were always naked dolls. I could dress them and 3 minutes later they would be undressed. ;+)

Jenny said...

Beautiful Patti!

And I must say after watching Lily with her baby doll I think she would make an amazing big sister ;)

Love the pictures of her sleeping, she is so precious!

Heidi Ehle said...

I love Lily. And I love you! This was an absolutely beautiful post, Patti!

Laura said...

Perfect!

Anonymous said...

Couldn't have said it any better :)There should be some kind of organization that visits moms and dads in the hospital with a DS diagnosis, or any special needs child for that matter. Mentors! That's what would be needed...I did NOT like the social worker who gave me a book in the hospital. I've always been a positive person, and she was quite the "downer". Thanks for your words! :)

Rochelle
Elk Grove, CA

Mandy said...

Patti,

You have once again touched my heart by sharing your deep, abiding love for Lily. I think you need to write a pamphlet or a book, even, for all those Mom's to take home with them from the hospital. At the very least, they should include a link to Lily's blog. Thank you for sharing your heart and your precious Lily.

Blessings,
Mandy

April Vernon said...

Beautiful, well-written, and oh, so true! Thank you.

gretchen said...

Absolutely slayed me. I so wish we were friends in real life. Love you!

Leah said...

Lovely. And those legging, moccasins and the hat... What a stylie girl! As always, she's a beauty.

Kelly Marin said...

Awww I love it, what an adorable hat!

Becky said...

Yes, could not agree more. If someone would have just said that your life is going to be normal, because truly it is, it would have helped. Unfortunately, the medical community only goes on old stereotypes and all that can go wrong, and views anything shy of perfect "abnormal." The world is changing though...I feel it and through blogs like yours new parents will be able to see their lives will be "normal" and much richer and better than they could have ever imagined!

Elizabeth said...

Catching up on blogs...glad I saved this one for last...what a perfect way to end an evening. Such love. <3

Life with Kaishon said...

This was beautiful in every way.

shayneswife said...

Absolutely! You speak the truth that we all live. It's amazing what "normal" is. I wish all could experience this LOVE. The world would be a different place for all people.

Christine said...

I just found out that my granddaughter has Down Syndrome. Your little Sweetheart is wonderful to see.