[EXTRA]ordinary Friends: May Mom of the Month: Meet Monica!

When I first met Monica, we were at a three part symposium offered by Cincinnati Children's Hospital. Specialists from the Thomas Center for Down Syndrome offered a three part group session on major aspects of therapy for children with Ds. The sessions were all for kids under the age of three for feeding, speech and walking. She was quiet at first, but I noticed her intense focus, even then.

To be honest, I don't really remember the moment I realized that we would be friends. But I do remember that I had immediate respect for her. Since then, I have gotten to know Monica much better. She is smart, politically astute, has a killer dry (read: awesome) sense of humor. She is a serious force. I think the fact that we both have boys (a minority in our Mom's group from my perspective) is part of our special bond. She is married to a pretty cool cat, Alan, who sits on the DSAGC board (of which I hope to join next year). And Harrison, her son is absolutely adorable!

At one of our last Mom night out's, she made a comment that has really resonated with me. She said something to the effect of "well, you are all now stuck with me for the rest of our lives."

Monica, my friend, if I had to be stuck with someone...you'd certainly be on my list! I'm proud to call you my friend. You are beautiful, encouraging and witty as hell.

First Name:

Monica

Children:

Harrison, 18 months, is our one and only (for now!). He loves bananas, crackers, music, and speed reading books.

Do you work or volunteer?

I've just finished my 6th year as a faculty member at Miami in the Political Science department.

[I like to call her The Professor!]

How many years have you been involved with the Eastside and Extraordinary Friends Mom’s group?

About a year.

Why you like being a part of this group?

So many reasons: #1 - support. #2 - a place to ask questions. #3 - I like imagining our kids growing up together, living together, getting married, going to school and working together, and generally just being friends for the rest of their lives.

Best advice for new parents of a child with T21:

Take one day and one thing at a time. (Advice given to me in the hospital by our pediatrician when Harrison & Alan were in the NICU and I was still at Bethesda North).

Greatest joy in having a child with T21:

#1: The giggles. #2: Seeing him work so hard and achieve every milestone. Sure, you could live in San Diego with perfect weather, but nothing beats a spring day in Minnesota after a long winter. #3: Becoming more open-minded, sensitive, and caring myself. #4: <insert nice thing about husband here - something about supportive, amazing, accepting, true partner. Seriously, I can't find the words>.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?

I've learned how to redefine what "smart" means. As a (somewhat) snobby intellectual, I've struggled with this the most. But I see an intelligence and joy in my son that is far greater than the smartest PhD I've ever known!

[This comment is humorous to me! Monica is about the furthest thing from "snobby" I've ever seen!]

Favorite Therapy Trick/Tool:

My favorite therapy tool is persistence and patience. We tried SO hard to get Harrison to sign milk. We did hand-over-hand signing. We made a book of pictures of his bottle and jugs of milk and showed them to him with the sign. The he started signing more. He signed duck, bear, cracker, ball... everything BUT milk. Then one day he started sort-of signing milk but he wasn't doing it consistently. I brought that picture book out and he saw the picture and signed milk like he had been signing it his whole life. Stinker.

What is your favorite hobby and why?

I love to work out. It clears my head. It makes a good day better and a bad day bearable. Especially when Harrison was first born, biking was the only thing that helped me escape from the shock of his diagnosis. Reading and watching good movies/TV are other favorites.

If you feel like it’s not too personal, can you share your diagnosis story?

(The following is an excerpt from Monica's birth story)

After he came out, (around 8:55AM) they put him on me along with a million warm blankets. He pooped all over me. I got to hold him for a while (not sure how long). They cleaned Harrison up and gave him to Alan. And that's when the doctor (our OB) came in and told us that he thought Harrison had Down Syndrome. At first I wanted to believe that he might be wrong, but I looked at Alan and we both knew he was right. I tried to do a little breastfeeding with the doula's help and the nurse said she didn't like his color. The pediatrician came and looked at him, told us he was 80% sure he had Down Syndrome, and that he was transferring him to the special care unit because he was having trouble breathing. Alan went with him and I stayed until things got cleaned up and they let me go up there in a wheelchair. When I got there, we couldn't hold him or touch him. This was around 11 and we hadn't called anyone yet or even had a moment to ourselves. There was a room next to his where we sat and talked. We didn't get good cell reception in there, so we finally decided to go down to my room, get lunch, call people and then go back to be with Harrison.

It always feels like nothing happens in the hospital and then all of a sudden there are tons of people around. Alan went to go get lunch, the nurse comes in to help me pee and the lactation consultant arrives just as the pediatrician comes in to tell me that he was transferring Harrison to Children's Hospital in 45 minutes. We went up to sit with him and see him off. Alan left to be with him and his sister Elisa and Alan's parents arrived to be with me. They left around dinner time and Alan came back at around 9 PM to spend the night with me. I was released the next morning (thank goodness I was in such good shape - I had a 100% natural delivery - and was able to be released so quickly) and we headed in to [Cincinnati] Children's Hospital.

Our prenatal quad test showed 1/2100 chance of him having DS. In retrospect, I was in shock.

But I want to end on a positive note. Harrison is a beautiful little boy who brings tons of joy into my life. I have been forever changed for the better, I think. Thank you all for being along for this crazy ride.

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Thank you, Monica for choosing to be a part of our group. I look forward to growing our friendship for years to come!