CBDSA - About Us

A Grandpa's thoughts:

So you're new to this Down Syndrome thing? So am I. At one time, we all were new but you learn about it
quickly.

Natalie just turned six months old a few days ago and while six months doesn't make me a DS old timer, I
sure understand things a bit better than I did at the beginning.

What happened? The day she was born, I saw them whisk her past me as I stood in the corridor of the
hospital. A quick count of arms, legs, fingers and toes showed there were reasons to count my blessings
and my daughter was fine so things couldn't be better. Then a little later came the "Down Syndrome" words.
They were going to do a test to confirm it but the results would take about a week to come in. Maybe, just
maybe it wasn't so. Well, it was so and for a moment it seemed our world turned upside down. Down
Syndrome and on top of that, heart problems. What turned out to be a time of ogling a precious little girl
through the nursery window turned into suiting up in the NICU garments every time we wanted to see her.
That was when I knew I needed to learn all I could about this thing so easily labeled Ds. Well, there's so
much more to learn than I thought. I learn something new everyday but not all of it is book learning.

Looking at Natalie, I find a love for her inside me that knows no boundaries. She's six months old and she
has Grandpa wrapped around her chubby little fingers. Just to see her little smile...hear her laugh...can
make me forget about all the bad in the world. This in itself is a blessing. I mentioned heart problems.
Natalie was born with some heart problems which I can't describe. You'll have to talk to her Mom and Dad to
get an understanding of that. All I know is she needed surgery. Until the time of her surgery, Natalie was
very lethargic and that beautiful smile and cute little laugh weren't seen or heard very often. Then came the
surgery...seeing her in NICU would break your heart but she came though it like a champ. I think it was
harder on all of us than it was her. Just ask Mom and Dad who seemed to spend every waking moment at
the hospital. Now she has that smile...that laugh and is an active little girl.

Did we miss something during that time before her surgery? Sure we did...we missed some of what kids
without DS do. We missed the constant crying and screaming....We missed the bottle feedings. Yep, we did
miss some milestones but we made our own. After the surgery, Natalie cooed and laughed. Maybe not a
big thing for child without Ds but it was huge for us. How about the time when she could eat consistently
without gagging or throwing up? Again to a child without Ds, no big deal but it was another huge milestone
for us. We made our own milestones just as you'll make yours.

Another huge milestone...Our family! Our whole family rallied around Natalie and her parents. My daughter
and son-in-law are incredibly strong adults (even though I refer to them as my "kids", they're by no means
"kids") and to this day I'm convinced I couldn't have done what they've done and are doing when I was their
age. People just don't see what hard work it is raising a child with DS. I know in my heart that if Natalie
hadn't been born with Ds, we wouldn't know just how strong we can be. Lisa and Luis...you two are
incredible and you just don't know how much I love you both..

To all you new parents, grandparents, relatives, and loved ones of a child with Ds. Consider yourself some
of the luckiest people on earth. You're going to learn so much and discover things about yourself you never
knew existed. Love that little one like there is no tomorrow...believe me, it's well worth the effort. Don't doubt
your abilities and for that matter, don't doubt your little Angels abilities either. I believe God gives us these
special kids for a reason. Be their Advocates! Every child is a gift but you'll never have a gift quite like
this...for me it's a gift I wouldn't consider exchanging for a sportier model...one with more gadgets, bells and
whistles. The model I have is top of the line and has more gadgets, bells and whistles than any model I've
ever seen and I wouldn't change it for the world.

Sorry to carry on...(hey, it's my site) but I just had to write what I feel. If some of you have questions or are new
to Down Syndrome, please feel free to get in touch. Just know that with one birth in a thousand diagnosed
with DS, you're not alone and there's no reason for you to be alone. We'd love to hear from you.

Gregg

About Us

Coastal Bend Down Syndrome Advocates (CBDSA)

Here's our reason for being here. Our
sweet Natalie was born 10/28/05 with
Down Syndrome.

What a beautiful little girl!

Then: October 2006

Now: August 2008