Having a Child with Down Syndrome, Part LXVI: Father’s Day

Copyright © 2013 Stephen Hawley, all rights reserved.

Father’s day with little kids is hilarious.  Hee-fricking-larious.  If you don’t have a sense of the absurd, it’s hard to really get it.  In their world, you and their family are some of the biggest things right now.  I made it a goal early on that no matter how stern I might have to be, I would make sure that my kids know with no ambiguity that they are loved and that we would take care of them.  And even though I’ve said that I’m Alice’s second favorite person in the universe (unfortunately, everyone else is tied for first), I know that she loves me too, because she tells me a lot.

On Friday night, Stuart had a friend of his sleeping over.  We did a good job of tiring them out so they both actually slept.  Still, Stuart got up early and snuck upstairs to leave a father’s day card on the top step.  A day early.  He was either confused or excited or both.  I picked it up and carefully set it aside to open on father’s day.  While I was waking up and poring over email, Alice decided that she too should give me her card so she came upstairs and handed it to me personally.  A day early.

On Sunday, I opened Stuart’s card:

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Did I mention absurd?  I don’t know for the life of me why Stuart decided to list the numbers from 10-100 by 10’s after his name.  It was either showing off or he finished quickly and had some blank space to fill.  Love the googly eyes on the penguin.

Alice’s card is this:

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Which I absolutely love, but it takes some explanation, I think.  When Alice was a toddler and long before we found out that she has Celiac disease, she really didn’t have a lot of variety in her diet.  She liked yellow/beige food:  applesauce, Rice Krispies, scrambled eggs, yogurt, mac and cheese, etc.  We tried pasta with red sauce, but she wouldn’t touch it.  One night we took her to a local restaurant and got her a couple plain cheese ravioli with a little butter and I got some penne with chicken in red sauce.  I gave her a little of my food to see if it would take, and after trying it she signed “more”.  “Oh,” I replied, “you want some more of daddy’s noodles?” (signed WANT MORE DADDY NOODLE).  She signed an emphatic “more” in response.

Daddy’s noodles then became a staple for her.  We’ve doctored it over the years by adding spinach and ground beef to try and sneak in some nutrition and now we make it with gluten-free pasta, but it’s still one of her favorite foods and if she had her way, she would eat three squares of it daily for the rest of her life.  It also became her stock response at school for any question where she really wanted to say, “I understand you, but I get more attention by being silly, so silly it is.”  She drew all these people – I don’t know who two of them are – and I love the massive bowl in the middle.

This year on father’s day, I decided to take Alice to an event sponsored by Mass D.A.D.S.  This is a group that is presided over by Jeff Roback as a support network for families who have children with Down Syndrome.  Their meetings are unfortunately timed and located, so I can’t participate without creating a burden, but I’m on their mailing list and Jeff was supportive of me when I ran the Falmouth Road Race last year.  Mass D.A.D.S. was sponsoring an event at Kimball Farm in Westford, and I thought it would be nice to take Alice for the day.

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That’s Alice with Jeff.  It was a nice location and a nice father-daughter thing for us.  It was a funny day for me in that I have days when people and personal interaction is really not high on my list of things to do.  I tend to sit back and observe rather than participate.  Today was one of those days.  Still, we had a nice lunch and walked around a lot and did some of the events they had there.  Alice took a pony ride, which she enjoyed, and she found a tortoise that was fascinating.

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Best of all, from her point of view, were the bumper boats: big inner tubes with little pivoting gas engines.  While we waited in line, there was another father in front of us with his daughter with Down Syndrome.  I think she was 7 or 8.  I struck up a conversation with him with one of my standard leads: “how’s her heart?”  This is an easy go-to for the secret club of parents with kids with Down Syndrome because the probability is nearly a coin toss that their child has or had an issue and it’s 100% likely that they’re aware of it.  So he started talking about how she spent 11 months of her first year in the hospital: she’d had a couple heart defects, a GI tube, closed off colon, and a weird venous redirect where a greater supply of blood went to her liver rather than the rest of her body.  It was quite the laundry list.  I said I understood and listed off the ASD, stroke, pneumonia, and so on.  We both had that commonality and understanding of each other and road we’ve traveled.  This is one of the reasons for the event, not just the bumper boats.

Thanks, Jeff, for organizing this.

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