On Being Six and in Chronic Pain

Pattern:

  1. She wakes up miserable.  She feels terrible.  She woke up half a dozen times and coughed her rattly cough and told you she felt horrible and barfy.
  2. You do you best song and dance to get her to eat some toast and tea, get her dressed.
  3. You cajole her and pamper and tease and goad and get the socks she forgot and zip up the jacket and put the mittens and hat on her and get her out the door.
  4. She drags her feet on the driveway, but then she picks up speed like you knew she would, and skips to the bus stop so she can be first in line.
  5. She gets on the bus and you breathe a sigh of relief.
  6. 10:15, you get the first phone call from the school nurse.  You talk to her on the phone and you don’t ask if she needs to come home and she doesn’t say it, so you tell her to rest up and go back to class when she’s ready.
  7. You call back at 11, but hear nothing from the nurse and assume the best.
  8. 1:30 is the second call, from her teacher, saying she just started crying in math, so you say you’re on your way.
  9. You rush over, sign her out, trek down to her room to find her in the hallway, getting dressed to go home, all smiles.  You sigh inwardly.
  10. You wait and pick up her brother, too, who shares his pretzels and the two skip down the street, happy as clams.
  11. She tells you all the things that went wrong today, then all the things she wants to do tonight (go get ravioli, no, go out to dinner, watch a movie, go to Menchie’s).
  12. And you just get angry.  You haven’t slept well in more than six years.  You are done with this roller coaster of her feeling horrible and then suddenly skipping with her brother, and then feeling terrible again  You’d think that when she felt great, I’d feel better.  Relieved.  Happy.  I don’t.  I feel bitter and tired and deeply crabby.  I can’t stand the sound of her croupy, month-long, cough any longer.  I get angry when she has energy and is playful.

Here’s the thing.  When she feels bad, her tummy hurts, her forehead hurts, its visible.  You can see it in her eyes that it’s truly bad.  When she wakes at night because she doesn’t feel good, she legitimately feels very bad.  And I’m so done with it.  We’ve seen her (useless) pediatrician a dozen times, the neurologist twice, an acupuncturist, three different chiropractors.  I’ve met with her teacher and the school psychologist.  We’ve cut out dairy and gluten and sugar and food dyes.  We’ve added water and magnesium and magnets and early bedtimes and fiber and more fresh fruit and whole grains and vegetables and laxatives and even a miserable enema…all the things we’re supposed to do and nothing changes anything.  And sometimes….she feels great.  Really great.  And I’m so tired I can’t stand her constant chatter and requests.

This is not a fatigue that goes away.  This is not something a date-night or Moms’ Night Out can cure.

She was sleeping a few weeks ago.  For the first time in her life, she was sleeping from nightfall until morning and it was disorienting but so welcome.  And then I made the mistake of telling someone and she stopped.  She’s back to waking two to six times a night, me with her, to tell me how bad she feels, to cough on my pillow, to tell me her terrible dreams.

I forgot where I was driving, *while* I was driving three times this morning.  I forgot my keys and phone and purse at a friend’s last night.

I stood in the kitchen for 27 minutes not making dinner tonight.  Not thinking.  Not deciding.  Just standing.  And then it was dinner and I opened a can of olives and called it a night.

 

So when I finally tuck her in and she drips back out to tell me for the millionth time how very bad she feels, I rub her chest with Vick’s, and fill her up with a teaspoon of honey for the cough, give her a drink with Kids’ Tummy TLC, Rescue Remedy and Lemon Balm Calm for the sore tummy and the nerves, ten little pastilles for croupy cough and tension headaches, and a Moon Drop for sleep.  Because I can’t keep giving her ibuprofen, which doesn’t work on her headache anyway.  Because maybe, just maybe, she still believes in magic pills and homeopathic cures.  I don’t. Not anymore. Please, stranger on the phone and in the store, tell me again how essential oils will help so much.  Add it to the list of things I have hardened my heart against.

I’m so, so tired.  I am worn right down.  I’ve done all I can to take care of myself once I use all my best parenting powers to get her to school.  And for the most part, I’m back to full-strength to keep taking care of her when I need to.   I do not know how parents of kids with special needs, or high needs, or serious or chronic health issues do it.  It is chronic for us, but it is not life-threatening or dire or scary.  Just constant.

~~~~

I wrote the above a month ago.  I wrote On Being Five (and in chronic pain) a year and a half ago.  This afternoon we head back to the doctor.  Again.  The same useless one. (looking at this, I’m realizing AGAIN that I need a new pediatrician.  Done.) Because it has been another month and no change.  I have no answers.  Add the shame of that to how I already feel about her “not feeling good all the time.”  What are we doing wrong? How have we lived this long just hoping she would feel better?  What do we do now?

 

 

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2 thoughts on “On Being Six and in Chronic Pain

  1. Your honesty I appreciate so much. Don’t ever stop speaking your truth and don’t ever forget how incredible you are even if you can’t remember where you were driving. You are her balm and you will keep applying rigorously.

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