Mac and Cheese and Overwhelm-ment

Yesterday was a tough day. At one of David’s last appointments, we agreed to be referred to a family in the area, whose adult son has Down syndrome, to contact the mom for support. This is something that has been offered to us in numerous ways – most specifically there is something called “family matching” through the WNC Family Support Network, where we would be matched up with a family who (probably) not only has experience raising a child with Down syndrome, but perhaps has also been through a similar medical situation to David’s.

Initially we balked at this idea, particularly me (Joanna). For a nosy social worker/therapist who asks personal questions all day long, I am fairly resistant to answering them. And at the time it was offered, we were in the middle of David’s NICU stay and honestly, the thought of adding anything else to our plate (even if it’s something that may have helped reduce stress?) was more than I could handle. And the thought of talking about all of this to a stranger was definitely not something I was interested in (yes, all the doctors and nurses were strangers to start with, but that was about David, not us, and it was about medical stuff, not all that silly emotional crap). But Matt is definitely open to it, and I am warming to the idea.

So I called this lady without any real agenda, as I had no idea what we were “supposed” to talk about. And let me say up front that she was very nice and I’m glad she is available for folks like us. We talked for awhile about her son’s medical history and all the stuff David has been through. She talked about her religious beliefs and the strength that had given her over the years, especially when her son was undergoing several open-heart surgeries. Her son is now 19 or 20, I think, and he still lives at home, but she assured me he is “very independent.” I realize this was likely not an all-inclusive list of his adult living skills, but what she listed as evidence of his great independence is that he … can fix his own macaroni and cheese.

….. … …. um, yeah …. …. …..

That was difficult. Again, I’m sure he can do lots of other stuff and for whatever reason that was the first thing to come to mind (maybe he made it for dinner last night or something). I had begun feeling sort of odd while she was talking about her son’s heart surgery, not quite panicky but (something). Soon after the mac & cheese part, the conversation was over and I just sat really still for awhile. I felt so overwhelmed by the big picture of David’s life that I felt as if I were in the middle of a tornado. I couldn’t really think any discrete thoughts, just everything jumbled together. I have tried not to worry too obsessively about the future, and I think I’ve been moderately successful in that effort. But this was hard. I thought about school and friends and bullies and independence and skills and … everything. I put my hands over my face and tried to gather my thoughts enough to say a prayer, and eventually I was able to do so.

In the book I’ve talked about before, The Year My Son and I Were Born, the author is a Mormon and the family participates in a traditional blessing of her son Thomas’ name. Her husband Reed wrote the blessing and it said in part, “and may every good thing denied to you in this life be given to you in the next.” I read that right after David’s heart surgery, and at the time I felt (after I cried, of course) pretty determined to make sure the list of good things denied to David in this life, is going to be a short list. We feel fairly confident that David will be able to make his own macaroni and cheese before he is 19 years old, and that by that time he will have a number of other adult life skills, and of course our love for him will not waver in the slightest, even if he doesn't. But … um, yeah.

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(from alidavies.com)