Tuesday, October 19, 2010

The Gift of Down Syndrome

"Maria" was adopted internationally, her new parents knowing that she would need a heart surgery. Their only regret was that they couldn't speed up the paperwork so they could start their life with her sooner. She practices her violin along with the other children in the family.  "Lili" is the well-loved middle child and functions almost at a level of her much younger sister.  She participates in a homeschooling drama group and will be in the year-end Shakespeare play. "John" was a DS surprise in a multi-lingual family; he uses sign language to communicate most of his needs. Through the loving care of his Catholic family and the prayers of the faith community, his physical challenges are healing. "Amy" is an only child with verbal skills that increase every day. She likes to have friends over to play and is a joy to her church family as well.

Although any disability is a challenge and makes child-rearing more difficult, all four of these children show that Down Syndrome is a gift simply for the reason that they themselves are gifts to the world. They make their families stronger, more prayerful and more tolerate of the differences that exist in each person. Children with DS are gifts to God from God Himself because every child is a gift to God from God. And it follows, children are gifts to their family and the world from God. It is every parent's hope that their children will make the world a better place and contribute to society with their talents. A child with DS might change expectations, but then the parent starts to see the unlimited potential that their child has. The child might not be conventional, but he or she gives more to the world than he takes. The innocence, optimism and hard-working nature of the child inspire other people to emulate their character.

Knowing these kids with DS reminds me a little of why the Eastern rites exist in the Catholic Church. (It always can connect to that for me :)....) Wouldn't it just be easier if we gave up our rite and went with the much larger Roman rite? Or perhaps we should just be Orthodox. As the state religion in their respective countries, they are so much bigger and powerful than we. No, we'll stay the way we are- small and unimportant, as a reminder to the world that the Church was one. In a similar way, it might be easier to not have a child with DS. There are parental expectations of worldly success that the child most likely will not meet and possible severe health complications.  But the child with DS reminds the world that all human life is in the image and likeness of God. The child with DS tells us that he or she is as much in the image of God as the intellectual and the athlete. The child with DS shows all of us that making a family is not an outcome-based factory; it is a domestic church that welcomes all whom God invites.

I have four physically and intellectually normal children. I cannot relate to the fear that DS parents might feel, knowing that their child will be so different. I cannot relate to the isolation that these parents feel; statistically, almost 90% of babies diagnosed with DS in the womb are aborted.  There should be many more of these children with DS, but they are gone from this earth. DS is much more likely with a mother over the age of 40, and more over-40 women than ever are giving birth. We should be seeing a lot of kids with DS. Most of these children exist only in the bosom of Abraham and the mind of their parents, perhaps regretting what they have done.

The personhood of people with DS cannot be denied. So the moral law of the Church applies to them as much as for any other person. In some ways, they are more 'person' than intellectually normal people. I look at a child with DS and I see a special son of God, given a coat of many colors. I look at the child  and I see a person who is closer to God than the typical child....

About this all-over-the-map, confused post: I wanted to write a post on Down's this Sunday after seeing one of our friends and being inspired by her and her family.

7 comments:

  1. I am ashamed to say this, but one of my biggest fears used to be having a DS child. Since then, I have seen what a gift they are to this world and I am not so afraid anymore. Good post!

    PS- If you want to link to a page, just highlight the text you want people to press and click on the link icon-- then just type in the address!

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  2. Louise- I don't think that anyone would go into a pregnancy wishing for such a serious problem. But- it is amazing to get to know a kid with DS- their potential is endless, but it is an adventure with no map.

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  3. having a child w/ DS - can say i was frightened because everything i was taught up to that point was persons w/ disabilities were separated from society.

    luckily, times are rapidly changing and the stereotypes that go with them!

    and lucky for me, my son was the best gift of all, even thou it was very difficult in the beginning.

    i enjoyed your blog post, and many of your words are echoed thru the down syndrome community, mostly because doctors give no support when a diagnosis of down syndrome is given.

    :) kim

    ps - acutally, 85% of down syndrome births are to mothers under the age 35 - because they have more babies! it is a myth that it is an over 40 thing!

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  4. Thanks Kim for your comment- I was nervous to write it because I don't have a child with DS- but it was just on my heart after other posts of other blogs.

    I bet you are a gift to your son!

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  5. Our parish is fortunate to have a L'Arche community in our midst. Bill Downey was a man with Down Syndrome who lived until he was 74 in that community. My favorite memory of Bill came during Communion one Sunday. Bill approached to receive the host, swept the hat of his head and bowed first, then received.

    Then he stepped away, turned to the congregation, again swept the hat off his head, and bowed. What a profound homily.

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  6. Kim's first para hits it right on the nail. The separation is the source of all the trouble. Special ed is necessary, but kids with special needs (not just Down's) are separated from the general population rpetty much from day one, and how can we be surprised, then, that nobody knows what to do with the dx, that 90% of kids are aborted? These issues will only be addressed by breaking down the walls, when those who don't have a meaningful experience with a disabled person...DO.

    Shannon, I LOVE that story.

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  7. Thanks for writing this, it is a timely subjext in our house. Mm ds had a little down syndrome boy in his first grade class. The children adored him. It was a sad day this week when he had to move away. My son would come home everyday and tell me about his friend Eric, the little boy. I once read where Pearl S Buck, wrote that the Chinese at one time considered a down syndrome child to be a blessing on a family. These children are filled with a love for everyone and bring light and joy to a family. For these reasons, I never consented to any testing while pregnant, it did not matter, I was going to have the child anyway. I was lucky to have a doctor who supported these choices.

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