Gratefulness for a Life

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.”

Cake from the waitresses at special breakfast out

Cake from the waitresses at special breakfast out

Blanket Monica made for her friend's new baby

Blanket Monica made for her friend’s new baby

Birthday dinner at home

Birthday dinner at home

A lot of birthday gifts!

A lot of birthday gifts!

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.

 

Donating Pull tabs

At Monica’s first job, she learned about saving pull tabs from soda cans. The organization donated the tabs to Ronald McDonald House in Cleveland. Monica knew the purpose of Ronald McDonald House was to help families stay close by when their child was in the hospital.  Monica had enough hospital experiences to know that you want your family to be near when you are sick.

Since changing jobs, she has been collecting the tabs on her own. Pretty soon, family and friends noticed Monica busy during parties, putting tabs into little baggies or cups. Little by little, people started saving them for her and giving her a little baggie now and then. Last November, when we drove to her cousin’s wedding in Florida, she was thrilled to find out how the Florida family had also been saving them for her.  We were glad we drove and didn’t have to carry them on a plane!

Monica's tabs weighin

Finally, Monica had a day off work so she could donate the tabs. We had her hold them and step on the scale. Ten pounds of pull tabs! Monica enjoyed the drive. It was a beautiful day and we loved the Easter decorations in front of Ronald McDonald House.

frontMonica in front

Today, she started again. Four little tabs are in her container already.

new tabs

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’s Aide Sends a Note

A note from Monica’s classroom aide, Sept 27, 2006

Today in Gym our new student had a fainting spell and an ambulance was called. We were playing softball outside, so all the children watched what was going on. When the ambulance came, Monica knelt down on the football field, blessed herself and said a prayer for the boy. How awesome is that?

2004 – Monica’s Cousin Writes An Essay

An essay by a fourth grade cousin in 2004

Down Syndrome Kids

“Look, two retarded kids are holding hands!” A classmate whispered excitedly. I
didn’t know what to do — should I stand up for them? Have you ever been in a tough
situation? If you have, you should apply the Four-Way-Test. This is made up of four
main questions. 1) Is it the truth? 2) Is it fair? 3) Will it build good will and better
friendships? 4) Is it beneficial to all concerned? Well, I wasn’t sure about this one. I’d
just apply the test. Then we’d see if this classmate was right to laugh!

So, was it the truth? Well, no. It was not. Definitely not. These kids had the right to hold
hands .God made them just as he did us. True, they had some disabilities. But, don’t we
all have some problems? It’s not nice to make fun of people, even if they are different. I
have a cousin named Monica who has Down Syndrome, and she’s fun to be with. She’s
generous too: last year she gave away all her Easter candy. Anyhow, she has feelings
like anyone else would. We really should respect them as we do each other. Maybe you
don’t realize it but, they may have problems and they do have ears. They can hear you
talking bad about them, too.

Next, is it fair to all concerned? Nope, it can’t be fair to make fun of problems a person
was born with. How would you like it if everyone made fun of you? I know I wouldn’t
like it, not one bit. Monica is different on the outside but, on the inside she’s very much
the same as you or me. I love my cousin and am glad and thankful she was put into my
family. So, technically it’s NOT fair at all. I really wish the expression “put yourself into
another person’s shoes “ were possible. Then, you could feel what the other person feels like.

Then, the question, will it build goodwill and better friendships. Will it? No.
Friendships. Are you kidding me? It’s hard enough to make friends for kids like Monica.
I really hope that these kids will be nicely treated in the future. Many kids manage the
friend business fine, others don’t. Kids with a disability are sometimes excluded from
games because they look different than the other children. These children are made to
believe that no one loves them, which isn’t true but, people treat them bad so, how should
the kids know.

Finally, is it beneficial to all concerned? No, no, and no. So, should we make fun of these
kids? Definitely not. I should tell my classmates to stop. It’s the right thing to do. No matter
what they say. I’ll stand up for myself and for Down syndrome kids!