Saturday, October 2, 2010

I'm Down With It !!

Dear Family and Friends,

As you may have read here, October is Down Syndrome Awareness Month.

And in honor of that, bloggers across the nation are taking the 31 for 21 challenge- blogging every day for the month of October to raise awareness of ds.


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So I'd like to take this opportunity to thank all of Lily's amazing friends and loved ones for all the support, kindness, words of encouragement, prayers and love we have received since her birth. God has blessed us with truly amazing people in our lives, and I know much of "how we're doing" is because of you.

I also wanted to give people who read this blog a chance to ask any questions about Down syndrome you might have, and I will try to answer them this month. I've learned so much since having Lily, and I know I have a lot more to learn!

The other day Lily was having her blood drawn to have her thyroid tested. Her levels were off when they were checked at OHSU at her 6 month check up, so her doctor wanted to have them checked again. (They ended up being normal.)

The girl who was drawing Lily's blood was having a very difficult time doing so- Lily never bleeds very easily. So as she was leaning over Lily's arm, trying to find a vein, she asked quietly,

"Did you have genetic testing done?"

She didn't look at me when she asked, and I could tell she was nervous asking. I was not at all offended by her question- I am happy to share the details of my pregnancy and Lily's diagnosis.

I told her no, we did not have the genetic testing done during my pregnancy, but we did see some markers on her ultrasound that showed us Lily might have ds.

The girl kept tapping Lily's arm in search of a good vein and said, "That's what I decided. My husband wants the testing done, but I don't want to know."

I asked her if she was pregnant- she wasn't showing- and she replied yes, 11 weeks.

I told her how I had felt about knowing- it wasn't that I didn't want to know- I just didn't want to put Lily at risk to find out. I told her that for me, having a baby placed in my arms was the best "preparation"...I knew that once I held my baby, I would love her no matter what, and accepting her diagnosis would be so much easier because of that. The girl agreed, and said again that she was fine with whoever her baby was.

And it got me thinking... are there questions people have about Lily or her future, or what causes Down syndrome, or what it even is- that friends of ours have, but they're too afraid to ask? Afraid it might hurt my feelings? Because it won't!! I love to talk about Down syndrome- it isn't a scary thing to me, I even joke about it!! (Ask my brother- we are always making corny jokes, like "Are you down with that?" or "You took her for her shots- don't you know that causes Down syndrome?!" That's how at ease I am with everything. And if you accidentally call my baby "a Downs baby" or say the "r word" around me- I'm not going to get upset:) We're all just learning too!

SO please, leave a comment if you have a question or just want to say how cute Lily is! I'm down with that !! ;)

Love,

Patti

5 comments:

Ashley said...

Oh, I have a question! What is Down syndrome??? Ok...I'm totally just kidding obviously :p
But I DID want to say that Lily just totally melts my heart. I want to just hold her and cuddle her and just kiss her little face :) I love that little girl and I love all the rest of you guys as well!
And, I am so glad that Laura and Lily have Ds because if they didn't, then we would have never met and that would be sad!
We love you, Lily lou!!!!

Ashley said...

Thank you, Patti! I actually made my header on Picnik...under collages :)
No she is definately not pregnant! Laura was the last baby :)

Patti said...

Ash- hahahahahahhahah you made me LOL girl!:) Well I guess I'll just hafta wait til tomorrow to find out your little surprise then. LOVE YA!

Ashley said...

Yes ma'am! It might not be that big of a deal to you, but I'm excited about it! :) Love ya too!

Tracy said...

Okay...here's my question...how did Lily-bird get so danged cute?