"I stumbled across this blog through another CVS blog (cvsdad.tumblr.com). When I read this Mother's Day post, I couldn't help the tears that poured down my face. I was diagnosed with CVS around age 6 and I am now 21. It breaks my heart that your Ellie has to go through what I went through. And that you have to experience what my mom went through as well. But if its any consultation, I rarely (if ever) have episodes anymore. So there is hope that Ellie will grow out of it too, or it could at least improve. CVS is such a tough illness to deal with, but your daughter is tougher. I hope that you let her live freely (within minimal limitations) as she'll remember all of the fun things you afforded her to do and she'll mostly forget the episodes shes had. But you've definitely got one thing right... CVS changes and strengthens the relationship with your daughter. My mom and I have the closest relationship out of any other mother-daughter relationship I've seen. Your Ellie will look back and appreciate all those times you rubbed her back and held her hair during episodes. It truly is the only thing that makes CVS less terrifying. But as she gets older she will definitely learn to read her own body, and you will have to learn to trust that she knows her own limitations.. That was a struggle I know my mom faced. But in the end, it gets better. I'm on the other side of this illness and I can tell you, it really does get better. It's an awful illness that I wish had a cure, but from where I stand it seems like you're doing everything right. If you ever have any questions for me or my mom, feel free to email me. I am wishing you and your family the best."
Here is my response:
Dear Meghan,
It’s
been a while since my last post. It’s summertime now and my Ellie has been
doing great. Besides for a few minor headaches and tummy aches, we have been
mostly episode free.
Dear,
sweet, thoughtful, kind Meghan. I’ve thought of you often though we’ve never
met. In fact your comment is all I know of you and still I feel like I owe you
a world of thanks. Your words have followed me this summer. Two years ago when
Ellie began getting sick a red flag was raised in my life. My protective instincts
took off and my anxiety crept higher and higher. We are two years into this
sickness and sometimes I feel like I am always on high alert. Only a sufferer
(and her mother) can truly understand, that’s why your words are such a gift.
When you watch your child go through so much pain, so much discomfort…when she
cries and begs to go to the hospital, when the pain is causing her to sweat
buckets and shake…well it’s no wonder us mothers (and dads too) do whatever we
can to protect our child from having to go through it again (and again, and
again). Our spring was rough,
though not as rough as a whole lot of other CVS kids and families go through,
nonetheless by the end of May I felt like Ellie and I both had Post Traumatic
Stress Disorder.
When will the next episode start?
Is it because she’s not sleeping enough?
Is it time to go gluten free? Maybe that’s causing it?
Is she constipated?
Is she exhausted from school?
Is she worried about something?
Should we skip swimming?
Should we skip that birthday party?
Does she need to nap today?
Should we cancel her summer camp plans?
Should we cancel our summer vacation plans?
Are there better medicines? Which doctor should I call to
find out?
Does she need a 504 plan? Will her next teacher be as kind
and understanding?
Does she need a therapist?
Will I have to miss another book club? Will I have to miss
another faith group? Will they understand?
Her eyes are bloodshot… her temperature is 100.2… but she is
begging to go outside and play. What should I do?
It is all consuming, never-ending, trying to find the
balance. And just when things begin to feel normal and you catch yourself
taking a deep breath, a fever happens or a mini-episode with tears and pain and
I want to scream (and so does Ellie).
You’ve changed some of that Meghan. And I’m quite sure that
there isn’t anyone else who could have said anything else that would have made
any difference. It took a stranger, a wise young woman who grew up with CVS,
who knows just what we are going through to help me hear what I needed to hear:
“I get it. It’s so hard. It’s terrifying even. You are doing a great job. My
mom and I have that gift of closeness too. LET HER LIVE LIFE, THAT’S WHAT SHE
WILL REMEMBER AND CARRY FORTH, NOT THE EPISODES.”
So with your words
as my brave shield of armor:
We go to the beach even though some days it is terribly warm.
Ellie went to sleep at Grandma and Grandpa’s for a week even
though her sleep is not very good away from home.
I let her try a sleepover at a friend’s house even though the
doctors at the conference advised against sleepovers all together. It didn’t
work, I picked her up at 9:30—she lived.
She had two playdates in one day, no episodes.
I let her skip veggies and mucinex for a day or two, no
episodes.
We drove home from a trip to visit with cousins and got in
at 9pm, very crabby the next day but episode free.
I found a therapist for her, to help me help her,
thankfully.
I took a part-time teaching job (a big risk, a big step, a
fabulous new adventure for me!)
We are currently driving (18 hours in a car) to Colorado to
climb the mountains, a dream my sweet 7-year-old has. She might have an episode
while we are there, but we’re doing it anyway. We brought the meds, there are
hospitals there. 
You helped these things happen. You helped me be brave and
learn to let go a bit. You reminded me, you taught me, that we are bigger,
stronger, braver and tougher than CVS and life deserves to be lived despite the
pain and agony of the episodes.
I am still cautious of course. It would be irresponsible not
to be. She has a cooling vest, a medical bracelet to wear on outings with other
families or school. She takes her daily medicines and supplements, has a strict
bedtime and she takes lots of breaks throughout the day. I have to bug her constantly
about drinking enough water and if I see bloodshot eyes, dark circles under her
eyes or her hands on her stomach I know we need to slow down. But, we are doing
it. We are putting fun adventures and time with family and friends before CVS
as much as we can. I’m sure the next time she hits a hard streak it will be
difficult not to be too overly sensitive or nervous, but Meghan your words will
stick with me forever. As one of my brother’s often says, you have been a “game
changer.”
Thank you!
