Upside of Downs

upsideof downs logoWe are fortunate in Cleveland to have great support for families affected by Down Syndrome. When Monica was born, I was given a flyer in the hospital with a number to call. I joined the Upside of Downs and got on their newsletter mailing list. I soon took advantage of many opportunities.

When Monica was approaching open-heart surgery, I was able to talk to another mother whose son with Down Syndrome had also had heart surgery as an infant. I attended a medical information night with several different medical professionals addressing problems common to individuals with Down Syndrome. I got hints on handling glasses and hearing aids for a young child. Many educational seminars have been held that were helpful to me – some on education issues, some on therapies and behavior. I have always learned a lot and enjoyed meeting other parents.IMG_0683

Another great benefit is the social opportunities for Monica. The Upside of Downs has held many fun activities that we have enjoyed. Some years our family life has just been so full of our own school and sport activities that we haven’t been able to attend many events, but it has been a great support just reading the newsletter.

Recently Monica attended two fun events planned by Upside of Downs. One was a Cleveland Indians game with friends.

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Last weekend she went to Patterson’s Farm. Monica took a lot of photos, but here are a few she is in.

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October is Down Syndrome Awareness month – fun things ahead! Looking forward to visiting City Hall on Monday, October 12th – Cleveland Down Syndrome Day.

2007 – Monica’s Mom Responds to Newsletter

An essay was published in a Parent Newsletter in February 2007 by a young man who wanted to change the world by eliminating Down syndrome. I’ve been reflecting on the essay and I’d like to share some thoughts in response. The young man was certainly writing from a perspective of compassion. His observation of his sister’s suffering moved him to hunt for a resolution to that suffering.

We all need compassion. In fact, our daughter with Down syndrome has taught us much about compassion. We are wrapping up another adventure in her life where she has evidenced so many times the empathy she feels for others. Monica broke her ankle on Dec 30th. While in the crowded emergency waiting room, she would tell each person called in ahead of her that she hoped they felt better soon and to have a good new year. When the orthopedic assistant was not able to form the temporary cast adequately before it began to harden, he vigorously threw it in the trash with some grumbling. Monica patted him on the arm saying ‘that’s okay, you can try again.” And she praised him when he then did the job well. On the first Sunday she trotted into church with cast and crutches, she couldn’t wait to hit the handicapped pew. She went down the line expressing her solidarity with all the elderly and their various walkers and oxygen tank carts. She has been making get well cards for a student in our school with cancer. We see her repeatedly sympathizing with the sufferings of anyone she meets.

Month after month, actually, year after year, we’ve suffered trying to teach her about coins and telling time. While listening in, first one little brother then eventually the other, learned money, then time. And she knew it. She still couldn’t answer Daddy’s questions right, but they could, and she was happy for them!

While it is not easy to see another suffer, could there be value in suffering? We all must work hard in order to achieve and sometimes the circumstances call for more than just hard work. We have to endure many difficulties throughout life. Would I eliminate a child to prevent their suffering? Hmmm… Almost every night when we are headed to bed, our older son is still doing homework. He is so tired. Perhaps no child should exist who is so smart that the counselor makes him take all those AP and Honors courses causing him this difficult life. And all winter we went to basketball games where our other son was not the best on the team, sometimes he fumbled and missed shots. He suffered some real humiliation at times. Perhaps no child should exist who has low basketball ability. Does our daughter with Down syndrome really have a life that is so much worse than theirs? Each of the siblings at some point went through a phase where they thought they had no friends, except Monica. She has always believed people like her. And always known her family loves her.

This then is our preferred resolution for the suffering. That each child be given a community in which they know they are loved and supported.