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.

2006 – Monica Age 14 – Bike Riding

An excerpt from the Christmas Letter 2006

Monica can ride a bike! Tim nearly wore out two pairs of shoes with all the running he did with her, but they did it. You should see the concentration, then the smile, when she sets out. Seventh grade is ups and downs, we’re still trying to figure out middle school academics, and how to improve her speech clarity, but these are our worries, she is happy.

Thanksgiving morning we opened an envelope from our children. Inside was a 25th Anniversary card with a note that they had reserved a cabin for us for the next two nights in Hocking Hills, where we had honeymooned. Did we ever think it would come to this? Remember those years of babies up in the night? Changing diapers? Taking wiggle worms out during Mass? Nodding off while reading spelling words? Oops, I’m still doing that. Well, for those of you still in the throes of these escapades, take heart. Our children planned an incredible celebration for us. The only possible negative was that we really enjoy being with the kids and it was hard to leave them! When we returned, there was a party going on – for us! Tim’s parents had held down the fort in our absence, but they said the kids didn’t need help with the party. They pulled it off themselves. We were so amazed.

2004 – Monica Age 12 – Family Trips and Traditions

An excerpt from the Christmas Letter 2004

Midsummer Dan and Gabe participated in the week long International Juggling convention held in Buffalo NY this year. Mary Ellen took the little ones and visited local museums and Niagara Falls. Rebecca and Tim stayed home to work. Rebecca worked this spring, summer and fall breaks at Fairview General Hospital in food preparation and delivery.

Late summer — we took a two week road trip with godson Peter St. Quinton to South Dakota and Wyoming. We went camping and hiking in the Badlands, climbed Devils Tower, toured famous Needles Parkway, visited Mount Rushmore and other sites.

Monica still loves school (5th grade) and her reading is really coming along.

There have been many other events and trips this year but some of our fondest memories are family visits and seasonal gatherings with friends and family.

Two of our best weekly routines are getting together Saturday morning to ‘white board’ the weekend and the upcoming week (plan it out on a whiteboard) so everyone gets everything done without conflicts, and being together on Sunday for an hour of spiritual reading. Spiritual reading is something we started about a year ago and we take turns reading a page or so each… out of the ‘current book’. These are books that explain the faith or the virtues clearly or a biography of an inspiring person. Monica and John listen or quietly look at their own books.

2001 – Monica Age 9 – First Sacraments

An excerpt from the Christmas Letter 2001

Monica loved the routine of summer school every morning and the boys rode bikes to swimming lessons. We also learned a little more time management with Gabe cutting three lawns and Rebecca babysitting 2 mornings a week and doing yardwork/housework for another woman unable to do it herself. Gabe and Dan attended Boy Scout Camp for a week and Dan attended a leadership camp in Pennsylvania. Rebecca was a counselor this year at the one-week girls camp she had attended in Maryland on Chesapeake Bay. I did laundry.

Second grade is an important year for preparation to receive the sacraments and we are so pleased with the special-ed religion classes offered for Monica. We’ve been working on Examination of Conscience with her and just like our older kids did, she reports first the faults of the next youngest sibling! Monica may not always be able to express it, but we can tell she has a wonderful relationship with God and we are so happy she’ll be celebrating First Holy Communion in May with her class. We’re very happy with her regular schoolwork too. Her teacher makes modifications to the classwork so that Monica is challenged to work hard and yet the work is within reach. Monica gets along great with her classmates.

1999 – Monica Age 7 – Vacation, New Sibling

An excerpt from our Christmas Letter 1999

This year we are a bit behind and did not get a picture taken in time to send out before Christmas, but rest assured, we mostly look the same.

This summer we had a vacation like we’ve never had before. Mary Ellen planned a Westward Ho, Colorado River vacation. Here are some pertinent numbers to snapshot the vacation. Thirteen states in 13 days in a Ford Econoline (use of the van was a gift of our friends the Singerlines!), that took us 5,304 miles roundtrip from home. Six nights in our dome tent and 6 nights in hotels. We were able to attend mass 7 days, (once in Spanish!) The highlights were hikes through Bryce Canyon and Arches National Park, a train ride to the Grand Canyon, a tour of the mighty Hoover Dam, swimming in the pools of the famous Flamingo Hilton in Las Vegas, observing the stars from the Lowell Observatory in Flagstaff, Arizona, a trip to the up thrust edge of Meteor Crater in Arizona (4,100 feet across, so big you have to see it to believe it) a family reunion in Phoenix, winding down old Route 66 through desert in southern California, and on the way home up 670 feet to the top of the St. Louis Arch. Mary Ellen had the vacation well planned out so the kids were always busy with reading, writing or games. We even had Spanish lessons twice a day with books, videos and audio tapes. Que bueno! Tim’s parents met us for the Arizona leg of the trip and we had a great time together in Arizona and Utah. Wonderful.

A sweet son was born to us on November 16th. John Bernard is five weeks old today and is a great joy to the whole family. We celebrated our 18th wedding anniversary in the dining room over dinner with our six children. So, life goes on! And God sends his blessings! Rebecca, Gabriel, Daniel, Monica, Gregory and John bring us joy. Necessity keeps us active and prayerful.

[2012 notation – This letter shows we were not always focused on Monica’s development, family life went on for all of us. Monica loved hiking the national parks and was able to navigate the trails pretty well. In Bryce Canyon we did use the child harnesses for Monica and Greg because in sections the trails were narrow and the drops steep.]

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1998 – Monica Age 6 – Daily Life

An excerpt from our Christmas Letter 1998

I was thinking about how we write about our big events of the year but it’s the little events that make up most of the year. Most days include events like trying to find something for breakfast that everyone can or will eat, remembering who needs gym clothes today, teaching Monica and Greg to play quietly so I can get some household chore done, thinking up a new way to get the older kids to practice their music lessons, serving dinner so that we have time for conversation between sports practices, listening to spelling words and flashcards, reading picture books to the little ones before bed and having the older kids put down their books to listen to an old favorite, sharing our petitions and thanks together on our knees at night, and after the kids are in bed, being able to look in each other’s eyes and rejoice in all that we have together.

We spent a few days in Washington, D.C., seeing the monuments and the national shrine. Our little guys aren’t really ready for a lot of museum time yet. We had a fantastic peanut butter-and-jelly picnic at the base of the Washington monument and spent a long time on the sidewalk in front of the White House while the kids drew it. Greg got a little tired of waiting and threw Monica’s sun hat through the bars to stir up some excitement. A nice-sized crowd gathered to watch the very well-equipped guard stroll across the whole lawn to pick up the hat and hand it to me!

1997 – Monica Age 5 – Outside Play, Sunday School, Acceptance

An excerpt from our Christmas Letter 1997

We are looking forward to some winter weather this year – Monica and Greg are old enough to really play in the snow and our backyard is now fenced, so they should be able to get out a lot more. We never thought we were fence people, but having one of the little ones heading for the street at the same time the other headed for the creek was just too much for me. They are so happy to be able to enjoy their backyard more now. I will admit that an awful lot of the garden was harvested this year before its time and none of the raspberries made it to the house!

Our fall parent teacher conferences at St. Angela Merici were very nice. Rebecca, Gabe and Danny’s teachers all reported the kids are conscientious, hard-working, polite, and have friends. That’s all we needed to hear. I was quite upbeat to head to Monica’s school two days later. She’s in the same Fairview Public Schools classroom with the same teachers as last year. The teacher, the aide and the speech therapist were glowing with enthusiasm over her progress this year. As my back straightened and my proud smile broadened, they told me that “Now she keeps her clothes on”!!!! Every once in a while we are shaken back to reality, aren’t we? After that I didn’t even ask what else I never knew about last year. Monica is getting better at following directions and is starting to be able to say some words. Her receptive language is really growing. She is a terrific helper at setting the table and loading the dishwasher.

During Lent, I was able to go away for a weekend retreat; my first in about five years. One of the things I came to realize in a new way was about accepting the will of God. You know, we really never questioned why Monica has Down syndrome, we just figured it was part of the job of life for us. We know many couples now who did not have the upbringing or support that we did and had to struggle with this. Of course, like us, they love their kids with Downs to pieces now. But what I’ve been doing is seeing this job as having the goal of minimizing the Down syndrome as much as possible and that my success would be measured by how normal I could make her. And that if I’m doing well maybe people wouldn’t even notice she’s Down syndrome. What I see now is how I need to love Monica having Down syndrome because that’s God’s will. That’s where we are here and now. How often we say we’re accepting God’s will, but we mean we’re grudgingly going along with it. That’s different from loving it. The following weekend was Monica’s Preschool Sunday School program. Monica had to process in, sing songs, sit, stand, etc. at the appropriate times, including go up and receive her certificate when her name was called. She obviously needed help for all these and it was one of the first times we were publicly facing ‘everyone’ knowing she’s different. Later that day, one of our parish priests asked us if he could wash Monica’s feet at the Holy Thursday celebration of the Last Supper. Again, we were going to be where ‘everyone’ would see her. Well, what a confirmation to sit there watching Father tenderly wash and dry her feet and realize that he, as a servant of God, really wanted to wash her feet. This wasn’t just a nice little ceremony, this was real. I could feel so clearly God’s love for Monica – exactly who she is. And I was so happy to sit there with her on my lap, even in front of ‘everyone’. In day to day life, all this probably didn’t change what I do, just what is in my heart, . . . and I do still roll my eyes when after she’s had a tantrum in the grocery, some stranger tells me it’s a blessing to have a Special Child.

1996 – Monica Age 4 – Talking, Pre-school

An excerpt from Christmas Letter 1996

We decided to make a study area in the basement for the older kids to be able to do their homework away from the distractions of the kitchen and the little ones. They really like having a place for those toys with small parts like Legos and K-nex that Moni and Greg get into.

Speaking of those little ones, they are a challenge! Remember how Monica was a baby for a long time? Well, apply that to the next phase too. I really tried to avoid the phrase Terrible Twos with the other kids, and tried to see the delights of constant curiosity and emerging independence. But, with both Monica and Gregory in this phase of development at once, that phrase sure keeps coming to mind! We are enjoying the acquisition of speech for both of them. We don’t know if it was getting the tubes in her ears, (we found out Monica had intermittent hearing loss due to fluid), starting private speech therapy, or having her constant playmate start to talk, but Monica is now saying some words! She dropped signing as soon as she was able to make a few sounds that were close enough to the words she needs to say most often; like more, juice, hot dog, cookie, no, up, out, please and thank you. She has been saying Daddy for quite awhile, then added Mommy and Bebba (Rebecca) this fall and just last week said Babe (Gabe) and Danny the first time. It is really a thrill.

Gregory’s speech is absolutely exploding. I know we were excited about the other kids too, but somehow Greg amazes us. He voluntarily says greetings and I love yous and points out objects he sees all the time.

Our summer was much more relaxed this year, if that can be possible with two toddlers. We gave up the organized sports and lessons and bought passes to the pool instead. Rebecca, Gabe and Danny really improved their swimming and snack-begging skills. Monica and Gregory were well occupied with their filling and pouring skills until the last week of summer when Gregory figured out how to open the gate to the baby pool area and I improved on my chasing skills!

We moved Monica to the Special Education Preschool in our own school district this year. The class is a good mix of children: half with identified delays (like Moni) and half typically developing. She has a lot more examples to follow than last year and it’s a shorter bus ride. We were thrilled a couple weeks ago when the mother of one of her classmates asked the teacher for our number as her little girl wanted Monica to come over to play. She’s very happy to get on that bus every day and now recognizes her own art projects when I take them from her backpack.

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1995 – Monica Age 3 – Double Trouble, Walking, Signing

An excerpt from our Christmas Letter 1995

Monica became a big sister with Gregory’s arrival in February and she can’t get enough of him; throwing toys into his crib probably helped him learn to crawl fast.

All of the older three children have been a great help with Monica and Gregory, our double trouble team. The little partners in crime require constant supervision but are also a source of amusement and delight. They play their own follow the leader games. Monica will dump over the clean laundry and Greg will eat it. Monica opens the china cabinet doors and Greg pulls out wine glasses. They are engaging each other in “conversation”: imitating each other’s sounds and gestures.

Monica started walking in July and is doing very well at it; she is also climbing up short ladders and ramps. We are so proud of her! She now signs for Please and Thank you (with encouragement), cracker, drink, more, pretzel, cheese, cereal, bath, brush teeth, car ride and bed. She started attending a toddler program in September four afternoons a week which has been good for her development and Mary Ellen’s sanity!