After I wrote about Jessica’s pureed foods post, I was talking to a good friend, and told her that after re-reading what I’d written, I was mortified to realize I sounded like a teenager, excited because my "BFF" had just written!
I was trying to explain to my friend where the excitement had come from, that, although I’d done things like pureeing table foods for my older children, somehow I have managed to treat Mallorie very differently, all the while wanting to make her life experiences “normal.” And so everytime Jessica makes a post about a “normal” thing she does for her Alex (and she does a lot of them), it’s like she opens a window into her home for me to see some possibilities I’d not even explored.
Here’s another example: for my outside job, I am required to do visits in homes of children with medical conditions. My coworker and I went to someone’s home last week, and while while we were there, the child (a couple of months older than Mallorie) was put into her high chair and offered finger foods. Granted, the finger foods part isn’t in Mal’s repertoire yet, but I sat mesmerized as that little girl fed, because I could see Mallorie sitting there. I was struck by the fact that we’d never purchased a high chair for her! I could use the excuse that she has poor trunk and head control, but while that is true, the truth is, that we’ve never even looked at what’s out there in terms of something as simple as a high chair. I thought the high chair this child was seated in
just might work for Mallorie (maybe with towel rolls next to her to prop her up), because it looked like it might have better side coverage than the ones we had for our other children. But I didn’t know that, because I NEVER go into the baby section of a store with a thought in mind except to buy cloth diapers or onesies. Somewhere, I guess, I’ve closed myself off from experiences that might bring up a sense of longing, and in the process, I’ve missed out on some of the “normal” things that might still work for our girl. There are other things. Like the day (again on a home visit), I saw a baby seated in an Exersaucer,
and suddenly realized it would be fun for Mallorie. Here I’d been perusing catalogs for overpriced “sensory toys,” and all she needed was to be placed in the same sort of sensory extravaganza other babies enjoy! Am I slow, or what?
So, anyway, here I am. I have this amazing little girl, who has brought such joy and love into our family. Caring for her does involve some things that most of the parents around us don’t encounter, like figuring out how to squeeze baby foods into a feeding tube instead of piling it on a baby spoon. And I can’t look at pretty hair ties without wondering if I need to buy more to connect and use for hanging a feeding syringe. But very much about her is, well, normal. Typical. She wants to be picked up when she cries at night. Although I’ll admit she is “special” in that she had 2 months of exceptional NICU care by nurses determined to establish a good day/night schedule, so she doesn’t cry much! But she enjoys being held. She knows and adores her siblings and her parents and others in her daily life. She loves when we sing to her. She also loves SpongeBob, apparently.
(And she might need a high chair for sitting at the table! We have to try it out, at least.)
So anyway, when I told my friend, Shannon, about how goofy I sounded in the post I’d made about Jessica, and tried to explain how good it feels, sometimes, to connect with moms who “get it” about things I think about every day, ... like how important it is to figure out ways to put “real” food in a g-tube, ...
Shannon interrupted me to ask, “What’s a g-tube.”
I asked her what planet she lives on??!! And then I sat down to check the blog of my new BFF, Jessica. So maybe my post about Jessica imparting her wisdom didn’t sound particularly mature. So what of it?
The Trisomy 18 Connection
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