We do the best we can everyday and everyday we go to sleep so thankful for all the great moments of that day but we also feel guilty for the moments when we snapped at them. Typcially our snapping is because of exhaustion, or trying to balance 12 things at one time, or trying to give everyone good attention at the same time, or whatever.
 |
| "What? We are just playing." |
But whatever the reason, we snap. And it doesn't feel good. And we make a pact to try harder the next day, we say a prayer for patience and good energy and we move on.
I have had a terrible guilty knot in my stomach for a few days now. Two weeks ago Ellie had what I thought was a HORRIFIC episode. Twice in the middle of the night I thought I should just drive her to the ER because she was clearly in so much pain (stomach pain) and just crying, moaning. It was awful, neither of us slept and I felt terrible for her. The strange thing was that she also had a very high fever the whole night (103.5 degrees). Ellie's episodes often go hand-in-hand with her body fighting some sort of bug (usually a cold), so I just figured she was fighting another cold and having a terrible CVS episode at the same time. This was on a Friday night. The epsidode was so bad it was taking her days and days to recover--also unusual, it usually just takes an afternoon or a day to recover. The following Wednesday B and I talked and both of us agreed we should take her to the regular doctor because she would NOT eat anything, was so lathargic that she almost fell asleep at dinner (on her plate), etc, etc. I was worried this was a sign that there was more going on with her than CVS. Maybe her anxiety around eating was so bad it was bringing her energy down, maybe she really does have mito disease and, well, that's scary... etc, etc. It never occured to me that she just had a terrible flu.
We went to the doctor and her doctor thought it could be rotovirus (really bad stomach flu known for high fevers and terrible stomach pain). She took a swab and it came back negative. I was bummed. I had hoped it was rotovirus. But the doctor said it might still have been rotovirus not CVS and the swab was just taken too late. I felt like she was trying to make me feel better, trying to convince me that this was not what our CVS lifestyle might look like. I felt deflated for all of us, for the pain Ellie had to endure, for the exhaustion and anxiety it was causing all of us.
Until the next Friday night.
Colin woke up with 103 fever, began puking, and well, fill in the blanks. Today is Wednesday and he is still not better. Acting just like Ellie was a week ago. Functional but exhausted, not wanting to eat anything, and still some diarrhea.
Mommy Guilt.
Ellie has this thing where she is really afraid to eat after episodes. She also is extremely sensitive to anything anyone says about what food is "healthy" or not healthy (which is confusing for her since so many of the adults in her life all have various opinions about what is healthy or not and why, for example for most people bananas and bread are good and healthy--but for Ellie this causes her constipation to be worse which in turn causes stomach pain--confusing, too much for a 6-year-old to understand). She soaks it all in wanting to stay healthy, wanting to stay away from an episode.
BUT.
But her weight hasn't changed for at least 9 months now. Her regular pediatrician said last week that it is ok right now, but that at her age and with her height increase she really should be gaining a little, she has not gained for a while. So, I've been trying to convince her that after an episode it really is ok to eat. That at school she must eat. That at home she has to finish dinner. Etc, etc.
BUT.
But overeating at a meal is a trigger for lots of people with CVS and it has been for Ellie in the past. Too much of a good thing leaves her in bed with a stomach ache. Also, too much chocolate is a trigger (just like for migraines). Some day too much wine will be too. :-)
So, last week, just two days after her terrible flu that I thought was just CVS, I snapped at her about eating. She refused to eat. I got crabby. Then the next day she still wouldn't eat, didn't want juice, complained of her stomach hurting. I told her she needed to eat. Her body was hurting because she wasn't eating anything (almost literally). More tears from her, more frustration from me. And then it became clear it had been a terrible flu. And now Colin won't eat anything, almost literally.
GUILT!
I know, I know I was doing my best, but damn do I feel terrible for being cranky with her about eating. It breaks my heart. Knowing that she was truly still in pain. That she too thought it was CVS (because she was following my lead) and she was trying to tough it out--go to school, go to dance class--all the while with this terrible flu bug and feeling awful. Ugh! It kills me. She is so amazing, and so positive, and so, so tough. Why can't I just grow a little more patience?!
Mommy guilt sucks. Luckily she is only 6. Luckily she is more resilient than I am. Luckily I have been able to hug and kiss her a thousand times since then. Luckily I have a husband who lets me sneak back in our bedroom with Ellie to have a "girl power hour" where we snuggle and read a chapter book and talk about school. Luckily I'm getting over it.
Some days I am really positive, other days I want to tell CVS to suck it. Today is one of those days.
No comments:
Post a Comment