The Sound Only a CVS Mom Can Identify from Across the House:

I belong to a group of moms that possess a special talent.  We did not sign up for this group by choice and we developed the talent by necessity.  And although we did not choose any of it, we use the talent willingly and gladly because it is born of love.  Love for our child.  You see, that talent, as unglamorous as it is, is the ability to hear and identify the sound of puke hitting the floor (or whatever surface is in its pathway) from any room in the house, no matter where our kiddo is in that house.  We are the moms of kids with CVS (Cyclic Vomiting Syndrome).  And although that does not sound like a big deal, it is of great comfort to a child who is suddenly hit by a debilitating episode of nausea, vomiting, possible severe abdominal pain, and possible fever, and even a headache.  For these kids who will no doubt need to be in bed with a bucket next to them in the coming hours or days, it is of tremendous comfort to have their mom hear that sound and come running to their rescue.

As much as I have grown used to hearing that sound, it still breaks my heart every time I hear it.  I surprises me that when I hear it I still let out a defeated sigh and literally feel deflated and I feel my whole posture change.  I don’t know why it still surprises me.  I guess surprise isn’t really a good word.  I guess that each day I start off hoping that it will be the day we don’t vomit.  Right now, we are in her cycle season.  See, my daughter cycles in seasons.  Her CVS is unusual.  She does not have week long cycles or cycles that last a few days or hours.  Hers lasts all fall/winter.  She is great from mid spring and all summer and into the beginning of fall, but then she begins to get sick again every single holiday season.  It starts around Thanksgiving like clock work.  And every year I think that maybe this will be the year it doesn’t happen.  Maybe she has outgrown it now.  We only got the actual diagnosis last year, so this is the second year I have actually been able to put the feelings into organized thoughts, but it has always been there.  I have always dreaded the winter because she has always been so sick during this time of year.  At least now we have a name for it.  But last week I thought maybe she was feeling better.  I was wrong.  Well, she may have felt better for a day, or a few hours.  But that was it.  I got my hopes up for nothing.  I was so hopeful that she would be back in school this week, but it didn’t happen.  She is having a horrible week again this week.  She has had migraines and increased vomiting.  I feel so bad for her.  She is having a hard time even getting her school work done that they send home for her to do while homebound.  She has terrible brain fog and absolutely awful debilitating fatigue.

We are hoping for an end soon to this misery for this year and that it does not come back next year!  The doctor we saw last week feels confident that she will outgrow this.  I sure hope he is right!  He was very comforting and very knowledgeable about CVS.  I am happy to have finally found a doctor to follow her for CVS that knows so much about it and how to treat it.  I am also comforted that we got yet another confirmation in her diagnosis.  It is always good to know that you are on the right track as far as treatment and/or management.  We have to drive three hours to see him, but it is worth the drive to actually have a doctor that knows HOW to manage this illness!  I will drive that drive every time for the proper treatment.  I guess that is what you have to do when you or someone you love has such a rare illness.