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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Saturday, March 20, 2010

World Down Syndrome Day

Yes, I have been thinking about this day since January, and for some reason, the idea bothered me. You see, we celebrate our girls uniqueness every second of every day. We are a family of 10, 3 of whom have Down syndrome, we belong to numerous groups on-line, the local group here in Tucson, and we have hundreds of friends whose children also have Down syndrome. Having children with trisomy 21 is normal for us, it is our life, they are our daughters, and so, when there is a day set aside to celebrate them, we are scratching our heads. We do not need a day set aside to marvel at being their parents!

OK, so I am likely looking at this wrong, what the day is for is to get others to see how wonderful our children are, but I unless you actually have a person with Down syndrome in your life, you will never know the joy, the challenges, the love, and the frustrations, and the pride when they learn hard earned skills.

You can read about dozens of families, you can see TV specials, and Youtube videos, but you will not live the lives we do.

I do not think people are good at envisioning lives different than their own. You can look in our windows and think that you could never do what we do, that perhaps our lives are more complicated than yours, that we give up too much for our kids, and perhaps you cannot see sacrificing the life you have now for one like ours...the truth is, I do not see my life being much different than it was 20 years ago, being a younger mom with active boys who broke things, fought, were always active (until we got a gaming system anyway). Small children require lots of energy to keep them safe and happy, my daughters require no more than a typical child would. The biggest difference to me is the development of my 3 youngest girls compared to their 5 older siblings.

When I had my first, Fred, he followed the developmental charts like clockwork, in fact he was pretty much spot on for every single milestone. Terry, my second, walked a tad later, talked a lot later, but did everything else "on time". Eric did everything early; crawling at 6 months, walking at 9 months. Brian and Julia were about the same as Fred, though Julia talked before any of her brothers. They all said it was because she was a girl, and girls were always talking, I am sure I do not know what they meant.....

Then we had Meghan, we learned that we could not take the developmental milestones for granted with her, she would actually need to be taught to do most of the things our other children did on their own. The main issue with Meghan's health was a floppy airway (trachealmalacia) GERD, and very low tone (hypotonia) Her floppy airway meant her oxygen saturation was lower than your or mine, in the low 90's, sometimes dipping into the high 80's. This meant she did not have the endurance to be a very active infant. Added to that was hypotonia, which made it difficult for her to learn to hold up her head, roll over, sit up. She had physical therapy from age 4 months. With therapy we helped her muscles get stronger, her nerves to "wake up" and send the message faster to the muscles so that she could do the things she wanted to do, therapy does not "cure" hypotonia, but it does improve it. Meghan was also hypermobile, (very flexible and loose jointed) pretty much goes hand in hand with hypotonia, and we could not pick her up like we did our other children, her joints would pull apart slightly.

Each and every milestone our children met was celebrated, but we all did the happy dance when Meghan finaly mastered hard earned skills. Having her actually showed us how much we took our other children's development for granted and what a miracle having a child with no special needs truly is. We embrace each of our children for the individuals that they are, and all of them are special too.

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