At any gathering, you will catch Monica taking the tabs off soda cans before putting them in the recycling bin. She is always on the lookout! Last week, we took her recent collection to Ronald McDonald House for their Pull … Continue reading
Some of Monica’s mom’s friends were planning a fashion show fundraiser. The daughters were going to be the models. Then one of the girls thought of Monica and wanted to include her. The girls had tea at Sally’s house and tried on vintage dresses. Then they all went to The Limited and tried on new clothes. The fashion show was about femininity and elegance and how they have been expressed in our clothing. Also how the clothing of other countries influenced clothes in the United States.
The girls arrived early on the day and practiced walking on the platform.
Then they all got dressed in a special room. There were lots of clothes and accessories. The girls helped each other.
The show started with some very beautiful and very old dresses.
Later there were the dresses from other countries. Monica’s first dress was a dirndl showing the influence of clothing from Austria. (Perfect for that Sound of Music fan!)
After the vintage dresses, everyone had lunch. Monica was seated with the other models, not her mom!
After lunch, the girls modeled the new clothes from the Limited.
Monica knew just how to stand to show off the dress she was wearing! It was a lot of fun!
- 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 had the privilege of traveling to England to visit her Aunt Terry. She was great company for her mother and a wonderful guest. She took photos of every new experience but that is too many to include here! We will share just an overview of the delightful adventure.
We drove across the Ambassador Bridge into Canada and noticed lots of wind turbines along the highway. We checked in at the Toronto airport. We charged our phones and enjoyed the iPads for travelers. The flight to London was smooth. Monica brought knitting, books, workbooks and her iPad. She was too busy to sleep, but when she got on the train out of Gatwick airport she gave in to a few winks.
We changed trains at St. Pancras/Kings Cross. We bought postcards and stamps there.
Monica’s Uncle David picked us up at the Scarborough train station in a car with the steering wheel on the right side and drove on the left side of the road!
Monica loved relaxing and sharing a cup of tea with her family there, but still did her best to help out with emptying and loading the dishwasher and setting the table.
Since we were there for Mardi Gras, Uncle David took us to the Scarborough events for Pancake Day. The Pancake Races had teams from different organizations running obstacle courses while flipping pancakes in crazy costumes. Then we walked to the sea to see Skipping day in which the children remember skipping with the old fishing ropes when the fisherman replaced them with new.
For the first Friday of Lent, Uncle David brought in Fish and Chips and Mushy Peas!
Monica’s cousins arrived on the weekend and we celebrated a birthday together.
Monica was the one who knew how to set the timer on the phone to take a group photo!
On a very windy day, we drove around Scarborough castle and saw the north beach.
After a week of really getting to know her aunt and uncle, we had to leave. We took the train back to London and Monica’s cousin’s girlfriend met us for a walking tour of Leicester Square, Trafalgar Square, a view of a guard and the entrance to Buckingham Palace, then a stop at the Treasury where her cousin works, a peek at Big Ben and the Eye.
Then supper and good night’s sleep before the Uber taxi took us to the train back to Gatwick.
It was a very long flight with an unplanned fuel and de-icing stop in Quebec City. Monica played her President’s game on her iPad so many times she hit a new high score.
Back at Toronto airport, we scraped the snow off the car when we found it in the long term lot and headed for home. We were so happy to be greeted by Monica’s nieces and nephew!
Everyone knows Monica loves the Sound of Music. Our good friend Melissa made a dream come true this weekend. Melissa organized a trip to Columbus to see the Broadway production of Sound of Music. Monica packed her bag herself and could not wait to meet up with the girls on Saturday. We were impressed that she remembered to pack things like her earplugs so she could go swimming, a little container to take her thyroid medicine and vitamins, and her charger for her phone. There were four chaperones and four young ladies about Monica’s age on the trip.
They stopped at a Dunkin Donuts for a break and arrived at the hotel mid-afternoon.
They had a blast in the pool. They enjoyed the Happy Hour snacks.
They got all dressed up and headed out to the Ohio Theater downtown.
Monica described everything to us. The theater, the orchestra, the set, the beautiful voices, the children! She loved everything about seeing the live performance. Afterwards, they positioned themselves where the actors came out and Monica got to meet the woman who played Maria von Trapp. What a thrill for her!
When they got back to the hotel they had pizza and cookies and giggled in their pajamas.
In the morning, they all went to Mass together at St. Patrick church and out to lunch at Spaghetti Warehouse.
This weekend excursion is something we never imagined would happen. We never thought we would have an opportunity for Monica to be included and taken care of so well. We could relax at home and know she was safe and having a wonderful time.
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 is so excited that St. Ignatius High School is hosting a Dress Down for Downs Day again this year! The students are donating money to the Upside of Downs to help families that have a family member with Down Syndrome.
We started this blog to give encouragement to families who are new to Down Syndrome. It should give hope to see what a great life Monica has!
At St. Ignatius, the students live a motto of Men For Others. Like her brothers, Monica also gives service in many ways. She is also donating to the Upside of Downs. She will contribute one dollar for every person who views her blog the same day St. Ignatius has the Dress Down, October 30th.
Monica is also busily knitting baby hats as part of our St. Angela parish-wide day of service FIAT “Faith In Action Together.” Handmade baby items will be donated to Womankind, a maternal and prenatal care center. She continues to collect tabs from soda cans for Ronald McDonald House.
Thanks for reading!
When we say our evening prayers, each person in the family says what they are thankful for that day. We are always thankful for each other and a roof over our heads and food on the table. Sometimes we get bogged down with other concerns and forget how much there is to be happy about. If you listen to the news items today, it could all seem so sad. Physician-assisted suicide, abortion, challenges to marriage and family, quality of life debating, corruption in public figures are all serious concerns. Listening to Monica’s nighttime gratefulness puts everything where it should be. Yesterday was Monica’s birthday, so she had extra items to be thankful for, but nearly every day her list is this long.
Last night Monica said:
“I am thankful that I was born. I am thankful that I went to Mass. I am thankful that the waitresses sang Happy Birthday and brought me cake. I am thankful that I took muffins to my co-workers. I am thankful that I got to give the blanket to Hillary. I am thankful that Danny came to dinner. I am thankful for the balloons and everyone texting me and calling me and emailing me to say Happy Birthday.”
I don’t think anyone in the family receives the kind of attention that Monica receives on her birthday, but it is clearly because it is reciprocal! The rest of us are so much more reserved in our own expressions of kindness. Monica really does remember to send cards and call and text other people, not just for their birthdays, but if they are sick or to express sympathy for a loss or to congratulate for an accomplishment. She is always making gifts and going out of her way to show love to others.
We 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.
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.
Last weekend she went to Patterson’s Farm. Monica took a lot of photos, but here are a few she is in.
October is Down Syndrome Awareness month – fun things ahead! Looking forward to visiting City Hall on Monday, October 12th – Cleveland Down Syndrome Day.