Ellie’s health has been mediocre the last few weeks since
the stomach flu/ER week. She has had a host of what I call “mini-episodes”
where she gets very pale, very quiet, often has a low-grade fever and
eventually gets teary and asks for her medicine, has to lay down with one of us,
and all of us pray it passes. But more significant than the mini-episodes, she
has had two more major episodes in the last month. A mini-episode is over in a
few hours but a major episode takes us down for 2-3 days, sometimes more
depending on what the trigger is, like a virus for example. It also screws up
our schedules and does a number on our sleep. So to experience a major episode
every other week is a lot. My mommy definition of “more major” equates to total
heartbreak with a side of puke and a LOT of stomach pain. Here are a few reflections on that:
1.
The hard part about your child having a chronic
illness is that it is chronic. I can’t take it all away from her, when it’s
done it’s not over. When we finish an episode we can’t be comforted by thinking
it won’t happen again for a long, long time. Ellie recently shared with me (and her cute first grade
class) that the worst part of living with CVS for her is always being worried
that an episode might start: “Everyday I’m worried about it actually. I can’t
stop worrying about it.”
So I remind her of how much we love her. I remind her again and again
that she is so brave and so strong and that Daddy and I are so proud of her. I
remind her that we will always stay with her. I remind her when we are chatting
on a good day and I remind her when she is in the middle of it: “I’m here
honey, mommy’s here. I’m so sorry. I know baby, I know. I’m right here.”
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| Waiting till she is ready to move back to bed. |
And we brainstorm. I remind her that her teacher knows all about CVS and
she can call me in an instant and that I will constantly check my phone in case
her school calls. I write to her
gym teachers to let them know she is having a hard time in gym lately. I ask them
(beg, hope, pray) if they wouldn’t mind reassuring her that it’s ok for her to sit
down, to get water, take a break. When going to playdates or birthday parties I
write down some info and my phone number and we tuck it in her pocket, just in
case. Each morning I tell her to
have a great day and then remind her that I’ll be here if she needs anything.
What more can we do? Recently I ordered a medical alert bracelet. It will be
engraved with her health info and my phone number, I hope it brings her
comfort.
2.
Humans are naturally selfish, including me. When
I write this blog, when I update friends and family, when I talk to the school
nurse, I am always talking from my perspective. I say “it’s hard” and “I’m
exhausted” but in reality, I’m not in a massive amount of physical pain. I’m
not the 7-year-old telling her class that she can’t stop worrying about “it.” I’m
not walking around nauseous and tired with off and on stomach pain each day. How
does she do it? If I puke once a year that is more than enough for me! Why am I
complaining?
So I remind myself: I need to
vent. For my whole life the very best way for me to move forward, to recharge
and to stay strong has been for me to talk it out or write it out. This is how
I remain strong so I can be strong when she needs me. I remind myself that it’s
ok that I am tired and it’s ok that this is hard. I try to tell myself whatever
it is that I would tell a friend who was going through the same thing: just
because I am admitting that this is hard for me doesn’t mean that I don’t
realize how much harder it is for her.
3.
Just like Ellie, lately I feel like I have PTSD
(post traumatic stress disorder). Ellie’s episodes are trigger related, not
over the same amount of days like some kids (in the CVS world, Ellie is a
trigger-kid, not a calendar-kid), so I can’t stop thinking about her triggers.
It’s always been on my mind to some degree since she was diagnosed, but the
last few weeks, the chronic-ness of it all, my mind is a whirlwind. I can’t
stop wondering when another episode will start. I wonder how she is doing at
school, I wonder if we should or shouldn’t do anything after school because of
her poor energy lately, I wonder if it will be a bad night of sleep or a good
one, I wonder if she is drinking enough, I wonder if she is being brave enough
to ask to sit down during gym or dance class. I wonder if I should be calling
the Milwaukee clinic to ask this question or that. When she looks tired, hot or
thirsty I immediately wonder if this is normal kid stuff or CVS related and
whether or not it will turn into anything.
Sooooo…
I remind myself that she is strong. I remind myself that she is getting better
and better at reading her own signals. I remind myself that we are doing our
very best and that the most important thing is that she experience life to the
fullest. CVS parents sometimes say that this disease can rob kids of their
childhood. So we will control those triggers the best we can and then let her
go ahead and run and play all the while crossing our fingers that things don’t
break bad in the middle of the night. I also remind myself that I need extra
breaks, I need to laugh with my friends and think about other things.
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| Recovery day after late night episode. |
While I can’t take all this away
from Ellie, I’m going to do everything in my power to make it better. I don’t
think this makes me unique. What loving parent doesn’t want to make it better?
But I do think I have been introduced to an intensity of that fix-it feeling
that I would have been ok with skipping as far as parenting goes. I have this
strong desire to think of new ways of making her more comfortable: different
medicines, medical bracelets, cooling vests, e-mailing teachers, role playing
with her how she might tell a teacher that she needs to sit down, etc, etc.
This year our family has also been
working to raise money for the annual CVS run/walk. I made fliers to hand out
to all the first-grade families at her school and she labeled envelopes to
attach to the fliers. Then she and I gave a little presentation to her class
about CVS. This had positive repercussions that I hadn’t considered. For
example, I was explaining to Ellie about a “cooling vest” (a little vest to
wear on hot days or during hot activities. Cooling packs slide into pockets on
the vest and it helps keep her body temperature down) and she said, “Well since
everyone knows about my CVS now I think that is a really great idea. Now they
know it’s just what I have, right Mom?!” I was surprised; it hadn’t occurred to
me that she would be relieved that everyone knew about her CVS. I had been
worried that she wasn’t going to like the extra attention drawn to it. My Eleanor
is strong, smart and brave.
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| Motivated and excited. |
Lastly, there is a sort of beauty
to our interconnectedness, Ellie and I. On this Mother’s Day weekend I would
even say there is something transcendent, spiritual or otherworldly about it. I
guess maybe it’s cliché, but the longer I am a mom the more I understand that
the love and connection between a mother and child cannot be compared to any
other. No one can read Eleanor the way I can (Brian is a close second of course).
I am the first to recognize when she is a little “off” and I have recognized
episodes that were hours away from starting. She has 10,000 facial expressions
and I can probably interpret 9,500 of them. I can usually recognize the
difference between a normal sequence of sleeping grunts and groans and a
painful sequence of sleeping grunts and groans. And when I hold her hair back
while she vomits, speak softly to her and sit by her bed for hours when she is
moaning and crying through the night—there is a fire that lights between us. We
are connected in a way that is hard to put into words.
I would pay all sorts of money, go
through all sorts of hard labor, move away from all my family and friends, I
would do pretty much anything to take this away from Ellie. That sounds
dramatic but in the middle of a horrible episode it’s the truth; however, I am
grateful that this disease has forced me to recognize the fire-y connection
between my children and myself. They
are my everything, an extension of my heart.
