Wednesday, October 23, 2013

"Love Doesn't Count Chromosomes"

Okay, I know it's late, and maybe no one will understand, but...I needed to reply to an email including info about my daughter Megan. So in explaining something, I was mentioning the world renowned Down syndrome expert, Dr. Siegfreid Pueschel, who diagnosed Megan on the day of her birth and followed her for many years at Rhode Island Hospital. I wanted to make sure I spelled his last name correctly, so of course I Googled it, and it was then that I discovered that Dr. Pueschel died a month ago. I felt like I had been punched in the gut.

Dr. Pueschel gave me my first book about children with Down syndrome, the very one that he himself wrote. It was such a special gift to me, especially knowing that he himself had a son with Down syndrome, Christian. Years later, I then gave it to a friend in Romania who had a child with DS younger than mine, who had no real information or help in her country to raise or help her child with DS.

Photo: Saving Down Syndrome

Dr. Pueschel gave himself 110% to the cause of educating the world about people with Down syndrome and trying to gain the world's acceptance of people with this "disability."

The fact that his own son had Down syndrome meant so much to me. The fact that I looked at his beautiful son in Dr. Pueschel's book meant so much to me.

He was passionate about teaching the world to understand and love those with DS. To realize that having Down syndrome is not a's a blessing. There are things we can only learn through being in contact with a person who has Down syndrome, or any other disability.

A year old
Like true patience. True acceptance. True love. Life in what I have often called “the scenic route” since my daughter Megan’s birth, is a lesson in what it means to truly love. I don’t always succeed in the patience…but you can bet that my love for my daughter Megan is so fierce and strong, that I would lay down my life for her and fight for her like a rabid dog.

Age 2 1/2

Dr. Pueschel, crusader for people with Down syndrome, impacted my life in a way no one else could have. Chris Burke, actor with Down syndrome who starred in the television series Life Goes On, was another. I had the wonderful opportunity of listening to Chris Burke speak at a seminar of a Down syndrome organization, along with his parents. Chris wrote his own speech and gave it, and it was wonderful, inspiring, and enlightening. I later had the pleasure of speaking with Chris, and of course, posing for a photo.

Singing in the homeschool
group choir.

But the person who has most impacted my life in the world of Down syndrome, is, of course, my very own daughter, Megan Heather. She is the one who, while in my womb for all those months, had the hiccups a bazillion times a day. She is the one who alerted the nurses, not the doctor, after her birth, that she was suspected of having Down syndrome. She was my first child, and I had just turned 23. I never expected to be given the news that my child had Down syndrome.

But then again…

I never expected to laugh as my baby splayed her arms and legs out like an airplane and blew raspberries while doing so.

I never expected to watch as my baby, then two and a half years old, took her first steps as my own mother captured it on her camcorder. And I felt like I was on cloud nine at the amazing accomplishment.

I never expected that I would put a final diaper on my four and a half year old child for the last time during the day…and celebrate her mastery of daytime continence.

Cooking with me.
I never expected that I would clap and celebrate as my child would say a complete sentence, with mostly real words and hardly any “nonsense” words, at age 6. And call to share the news with my family and friends.

I never expected that when my daughter was ten and a half, she would finally be toilet trained at night and I would cancel the running order for adult diapers from the medical supply company.

I never expected that seeing my child ride a bike…

or catch a ball…

or draw a “flower person” …

or walk up or down the stairs herself…

or buckle her own seatbelt…

or memorize bible verses…

or pour her own drink…

would excite me beyond words and thrill me so.

I just never expected to learn about true love the way I did, through my sweet beautiful daughter, Megan Heather. I love her so! I love my other children too; Caitlin Elizabeth, Ryan Anthony, and Timothy Richard. But there is no denying it; there are just some lessons that I could only have learned through the blessed gift of being Megan’s mother.

October is Down Syndrome Awareness month. Think about what a bare and bland place this world would be if there were no people with Down syndrome. I’m sure you must know someone blessed with it. Go hug them. “Like” a Facebook page dedicated to educating about and celebrating people with Down syndrome. Read about Dr. Pueschel and the wonderful work he did in his life, and comment on his Facebook page:

Megan doing one of her favorite things:
playing with her dollhouse people. <3

Other links you may enjoy:

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