When Monica’s cousin got married in February, she wanted to go! Monica’s mom was still too ill to travel but Monica’s brother said he would take Monica. But – how could she go? Monica’s brother lives in New York City … Continue reading
- When Monica was little, I was sometimes overwhelmed with medical questions. Monica just had more issues than our other kids. Well, it does make sense. The statistics from the CDC show about 50% of babies with Down Syndrome have a heart defect, up to 75% may have hearing loss, up to 50% have sleep apnea, about 50% will require glasses, and up to 60% have eye diseases like cataracts and many have digestive tract issues. Over the years, Monica has proved that her medical events are just more adventures. I have included details about her open-heart surgery, frequent ear infections, broken ankle, and thyroid issues in other blog posts. She continues to charm her medical providers and her positive outlook makes these challenges easier.
- When each medical question came up, I found myself searching for someone who had been through it before. How do you prepare a kid for surgery? How do you keep them from losing their hearing aids? So, I am going to share our latest adventure in case someone else is wondering….what if my child with Down Syndrome has to have an Endoscopy or Colonoscopy?
- If you aren’t interested, feel free to check back for the next post!
- Monica has been having frequent loose stools and with Celiac Disease common among people with Down Syndrome, not to mention that she has two brothers with Celiac, I thought we ought to do some testing again. She had had the blood test for Celiac in the past, maybe 10 years ago, but that doesn’t completely rule it out. After doing the new and improved blood tests, and including the newer genetic test, and stool tests, the gastroenterologist was pretty sure it could not be Celiac Disease, but couldn’t say what was wrong without ‘going in’.
- The prep for the endoscopy and colonoscopy is similar to adults, but they actually try to be a little gentler with young people, spreading it out over a longer period. So beginning on a Thursday morning, Monica could have only clear liquids, a dose of stool softener, and then in the afternoon a series of Gatorade with laxative stirred in.
- This is when the fun begins.
- I highly recommend having brothers who will play games and yell ‘Chug! Chug!’ to keep the afternoon flowing…
- Monica was such a good sport, giving reports after each trip to the bathroom.
- She woke during the night to go a few times and had some stomach cramping, but really slept almost normally.
- Friday morning, she could have only a few sips of water with her thyroid medication.
- She packed her own bag for the surgery center. Games, coloring books, markers, prayer books, a favorite stuffed animal, stationery and her address book, photo books: enough to last weeks.
- On arrival, she changed into the hospital gown folding her own clothes neatly into the bag provided by the surgery center.
- I refused the pregnancy test for her and had to sign a form saying so.
- The anesthesiologist asked her if she was too old for stickers and then decided to bring them anyway. Disney princesses.
- She was trying to show the nurses some photos in her phone of her older brother’s trip to Rome, but we observed her speech was becoming slurred – the Versed was working already.
- Soon, she was rolled away.
- When they called me back in, she said, “I had a great nap!”
- They let her choose Diet Pepsi and Oreos to help her wake up.
- The gastroenterologist brought photos from each part she examined during the procedure. Monica was fascinated. She tried to match the photo label with the diagram showing where it was taken.
- She was back to herself within an hour and we were headed home. She had no after effects from the procedure or the anesthesia!
- When we know more about results, I can write those too.
Monica’s brother Greg now attends Cleveland State University’s Washkewicz College of Engineering. At a welcome back event last week he won tickets to the CSU basketball game being played at Quicken arena – the “Q”. Monica hunted up an old Vikings jersey and green t-shirt for the game. She had a blast.
Monica and her cousins had a great time meeting at the Cleveland Museum of Art.
Everyone loves playing follow the leader around the plant areas in the atrium.
Monica really enjoyed the interactive art in Gallery One.
Here is one of the features. The computer tries to find art to match your facial expression. They did pretty well with Monica.
Another experience is matching your own posture to that of a sculpture in the museum. Monica did pretty well with that!
Our family will join in the support of The Upside of Downs of Northeast Ohio by donating $1 for every view to Monica’s blog on October 17.
Monica’s birthday greeting video from Soul2Soul. Click on this link! Monica’s brother Greg sings with his friends from Soul2Soul acapella group at Miami University.
Fairview High School has approved Monica for the Community Work Experience program at Polaris Career Center. She is in a rotation of jobs at Southwest General Hospital learning many skills that will allow her to be employable by graduation if not sooner! She loves working and the staff love her. In the afternoon Monica returns to Fairview HS for classes. Her curriculum there is very practical and focuses on functional math and language skills. Maybe you have gotten a note from her? Monica corresponds more than anyone else in our family, remembering birthdays, events and concerns. She loves to go to daily mass with Tim and Greg and outpours cheerful enthusiasm. And she tickles the ivory! Every day she practices piano with an amazing self motivation. On Sundays, when we have family spiritual reading, she eagerly participates and focuses on speaking very clearly. Greg and Monica attend parish youth group meetings and events, with Greg keeping a watchful eye on her without getting in the way of her making her own friends.
An excerpt from the Christmas Letter 2008
Rebecca and David made their wedding a beautiful family celebration having the brothers as groomsmen and Monica as a bridesmaid. When the other bridesmaids arrived a few days before the wedding, we were thrilled they insisted Monica join them for the shopping trips and luncheons. While the wedding may have been a major event — it was not the only amazing thing about 2008. In March, Monica had her Confirmation. She chose Therese for her Confirmation name, fitting because St. Therese had a beautiful relationship with her father and older sister and loved Jesus in a simple childlike way.
Monica loves high school. Besides the stimulation of all the students, she loves the pre-vocation class which has her working in the dining room at a nearby nursing home. Monica has been teaching us new ways to fold the cloth napkins for a formal dinner.
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.