An excerpt from the Christmas letter 2007
As we share this wonderful Christmas season, we are well aware of the many blessings we have been given and how fast time is passing by. Rebecca attended her last Notre Dame Football game as a student, John is getting too big for our laps, and now I can’t even call my mother to tell her I got home safely. So we are savoring this precious time together. We are savoring each bite of Mom Jakubisin’s nut roll shared with Mom and Dad J over a pot of tea. We are treasuring each meal that all the kids are here at the table. We are even delighting in Monica’s singing of the Christmas carols and Gabe’s and Dan’s long legs taking up the whole living room when the boys are playing Monopoly.
Our children have continued to fill our lives with adventure. Monica began 2007 with our first broken bone. She taught us a lot about compassion and cheerfulness through the winter on crutches and through the summer with a palate expander and braces on her teeth.
Gregory is a great brother to Monica and John and has starting doing some babysitting since he took the Red Cross course last spring. It won’t be long before he is also taller than Mary Ellen. John has taken off with his reading and now, like his siblings, often has his nose in a book. He had his First Reconciliation this month and now begins preparation for First Holy Communion in May. He is also playing basketball and helping Monica with her homework.
Monica loves 8th grade and the social events like the pep rallies, bake sales and school dances. Her education continues to challenge us to pay attention and make sure she is getting what she needs, but she loves her teachers and they love her. She has been on Thyroid medication for a few months now and we know it was right because she is so much more alert and involved. She is preparing for Confirmation now and has asked Rebecca to be her sponsor.
A Sample Note from Monica’s aide:
Monica had a great day. She has been telling us about your upcoming trip to Florida and Grandma. She did a great job on her current event. She is quite a star. She was very proud to show everyone her merit award. Mr. K took the class to the Gym and Monica shot 31 baskets. She knew her spelling words today. A + + She was ready!
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.