Thursday, November 18, 2010

Her strength

When Emma wakes up in the night she'll turn on the light, sit by the door, and call for us over and over or start crying. If she calls for us, I know that she's going to be somewhat draining. She must feel somewhat crappy to not sleep, but well enough to run a rat race at 2:30 in the morning. If she wakes up crying, I know she feels horrible-she's sick Emma. Early this morning, Emma woke me up crying. When that happens, I always jump out of bed with my gloves on-meaning a huge rush of adrenaline comes over me. It sure does help in the moments when this inadequate mommy needs a push to deal with some situations. Really-she's 50 lbs now.

The hard moments we've had and times we are tested to the very core vanish when I see sick Emma. I'm telling you, as a parent of a child with special needs, there is pain in watching them suffer. They go through a lot, big or small, there is always something. Emma runs around with different illnesses that would knock me off my feet for a couple of days. She can do that, she's built up a tolerance. The interesting part is that for some reason the most tender moments with her come when she's sick Emma. She comforts us, she loves us. More times than I can count, she's put the palm of her hand up to my cheek and given me this look. A look that is so wise and comforting. I see her true character shine through in some of her toughest moments-always with sick Emma moments.

Her insulin pump site occluded in the night-went bad and stopped delivering her medicine. On top of that she has another cold. Since the end of September she has had a cold, a sinus infection, a yeast infection, another cold, another sinus infection and now a brand new cold. Even dinky colds spike her sugar nonstop and create a lot of issues for us to deal with. The no insulin combined with an illness created a situation that was on the scary side today. She was white as a ghost, lethargic and kept lifting her jammies to show me her stomach hurt. All I know is that her sugar was over 500. She was too sick to send to school and it took until dinner to get a normal blood sugar.

I know it wasn't an easy day for her. Yet, she was so sweet and tender all day, not one meltdown. Her strength is amazing.

Wednesday, November 17, 2010


Tonight I took Emma for her annual blood work/screenings. I've had some anxiety about it this time, I should say more anxiety this time. The fact that I've procrastinated taking her in since the end of October is proof enough. After the screening this summer and getting blindsided with Celiac disease, I've been nervous. We've had enough emotional trauma that anymore there is no comfort zone. It's just how it is around here. Nothing that a couple of smooth years couldn't fix. Emma deserves that.

While parking next to the building, Madison said "I think we've been here before". Yes hon, we have. Emma walked into the lab building like a pro, she was so cute. I love getting to be with her when she is in one of her good moods. It is some of the best medicine there is, I soak it up. Her mood was great right up until we crossed through the door into the lab room where they draw the blood. Emma is smart, she knew where she was. It was heartbreaking and adorable(her pouty lip is so cute) at the same time to see her change in countenance. While we were getting Em ready, one of the nurses said "we've seen you guys here before". It was a funny moment, since I had just been thinking the same thing. It's always a reality check for me when I recognize nurses and they recognize us. Life for the most part feels "normal" to us now. We've adjusted, it's our life. There are times though that the differences, compared to before, will slap me in the face and I'll feel the difference more. Tonight was one of those moments. It always ends up being a good thing because after the journey it takes my brain on-I always recognize how lucky we are to have Emma.