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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, October 1, 2011

31 for 21 day 1-ABC's of Down Syndrome-A

A is for acceptance, advocacy, adoration, adoption, and of course the other A word which I will save for another day.

We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH

We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.

When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.

For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.

We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.

I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.

I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this one...how about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.

Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.

Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)

Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.

Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"

Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.

Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?

So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!

We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.

So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.

1 comment:

GoldenAngelsWorks said...

I feel very blessed to have met your three special angels!

I hope to someday see them again.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video

WDSD