Sunday, April 23, 2017

Everyone's Favorite Topic - Therese

Okay, so she's not everyone's favorite topic. My other kids get pretty darn sick of hearing about her. I can't blame them. Of course they worry about her, but they are 13 and 12 (two of those). They naturally think that the family tends to revolve around Therese much of the time, and they naturally resent that at times. I completely understand their feelings, and someday (if not now - they might now) they will understand that there is no choice. This week I took Therese to the pedi she started seeing when she was three days old (jaundice that sent her to the doctor pretty much when she came home from the hospital - if you know her liver/bili stories from a few years ago, you'll just sigh and roll your eyes knowing that that actually started when she was three days old!). Her stomach pain has just been so bad over the past three weeks that both she and I couldn't take it any more. Her middle of the night agony texts greeted me every morning. Things that "normal" kids would wake their parents up for are things that she just texts me about. He referred her back to the gastroenterologist that did her liver biopsy when she was 12. I called the next day to get an appointment. It's been more than three years since she saw him, so she is back to being a new patient. Miracle of miracles - we got in the *same day*. His first comment to her - "You got tall." No lie!

After being at his office for OVER TWO HOURS (most of that with the doctor or his nurse - these people are *thorough*) the same day debate club meets (so I'm already getting nervous about time, especially since I'm not home to see what my younger three are up to), Dr. V. tells us that along with all of the blood work, etc. he is ordering, he wants an abdominal X-ray. I tell him that I can get that tomorrow (that would have been Friday). He says, "Today." I tell him, "Well, actually, we have an activity that starts in a couple of hours, and I..." He interrupts me to say, "TODAY." I say, "okay." So we went to get an abdominal X-ray. And now we are waiting to find out what he's looking for and if he finds it. (For those who don't follow Therese's health obsessively, she has, among other things, Crohn's).

On Friday, she was supposed to go to a Spring formal that is, for homeschoolers around here, the equivalent of prom. We had bought her two dresses for her two formals this year. This one is short and looks like something you would see at the ballet. It is beautiful. We went everywhere looking for the perfect shoes and jewelry. She was so excited. She woke up Friday just exhausted and so, so weak. She couldn't lift her arms and she couldn't push the "on" button her phone. If you're not familiar with the spoon theory of living with chronic illness, do everyone with chronic illness a favor and read the article I linked. I think Therese just used all her spoons on Thursday. Half a day at the doctor and then all evening at debate. She woke up on Friday with nothing left. She told me she couldn't go to the dance. I was so sad for her, but one wonderful thing about her personality is that she doesn't mope or sulk. She is very practical. I know she was sad and I saw her tear up a couple of times, but she didn't make the whole family miserable because she had to give up something she very much wanted. Instead, we watched Sing and ate Chinese food.

On Saturday she woke up even weaker and with no color at all. She sat up in bed to tell me goodbye when I took the other kids to shooting, and she just get on going and ended up rolling to the other end of her bed and whacked her head on her foot board. Her blood sugar was normal, but when she took her blood pressure, it was 74/62. No wonder she was so weak and looked like crap. The hideous blood pressure is part of dysautonomia, another of her lovely illnesses, an underlying cause of which is EDS, yet another one of her problems! Therese is the gift which keeps on giving. Of course, with all of these illnesses, most of the time, she just doesn't look sick! If you know her in real life, and you don't really know her, you would have no idea she is sick. That's one reason, by the way, that she is so heavy-handed with the makeup. She doesn't want to look sick and she doesn't want to be treated differently for being sick. Paradoxically, it doesn't matter what she does: she suffered a huge blow in dance at the beginning of this year because of the label (only the label) "sick," but she gets bullied for having mad makeup skills. She's learning a lesson not all homeschooled girls get - there's no winning with teenage girls.

So, yes, my precious other children. Sometimes our family life revolves around Therese. I worry about her so much it makes me feel sick, and I thank God every day for your (relative) health. It's one of those things you'll understand when you have children of your own. To everyone who prays for Therese, thank you.

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