Titus Update: A New Normal
We’ve been home for a week now, and most days that I’ve wanted to write an update but haven’t known what to say. Things change so much. His weight yo-yos, and we’ve had a few hard days, but after a week with the feeding tube going directly into his intestines, we have slowly upped his feeds. Over that week, Titus has gained 11 ounces! Although the weight gain is primarily from the calories going through his tube (and not so much from the food he’s eating), I have an amazing friend helping me process ways to encourage him to eat more. I think we’ve learned that he digests protein and fat, and it’s the veggies and fruits and carbs that he doesn’t handle. Surely every little bit of knowledge helps.
Seth’s parents watched the older 3 boys the entire week before we came home, and then my parents came for this last week. Truly I don’t know what I would have done without them. I literally just swept my own kitchen floor for the first time in weeks. My sister and sister-in-law were planning to come today, but we’ve asked them to wait since this seems to be a marathon. We may need them here later, and suddenly we’re all acting desperate for normalcy. It’s funny how hard regular ol life can be, but then when you lose the regular you think you might do just anything to have the old way back again.
Titus turned one the day after we returned home from nearly two weeks at Arkansas Children’s Hospital. We had an impromptu birthday party for him and Jude, since Jude turned 6 while we were away. A dear friend made us allergen-free cupcakes, and that was our introduction into the world of not having a clue how to eat without dairy, wheat, soy, or eggs. Every day our church brings our dinner, and each woman who cooks has helped me enter in a little more, showing me ways to cook and ideas on how not to be boring.
This post is not poetic, but be warned: other than this, all I know to do is write poetry. In my desperation to be normal, my oddball features have stepped into high gear. I guess poetry is a coping mechanism?
A week from Monday, my 2 oldest boys will start public school. My Jude starts kindergarten. I want to hold his hand for one week straight. Nobody’s taught Ian jack squat, and yet he can tell you all his letters. Isaac is starting 2nd grade, and I’ve started wondering if I skipped that grade because I can’t remember it, which may be a good thing since I’ve never faked confidence more than when I’ve sent my own kids off to school. If I don’t remember it, then maybe it wasn’t that bad? I hate anxiety.
The back and forth of trust and doubt, of tantrum and security, of answers and waiting long, all of it is maturing me. Yet I still feel like I’m floating outside my body watching it all happen below. Were it not for so many of you filling in the gaps for me, I may have fallen apart. Thank you for showing us such love.