Track, Report, Track, Report

04/01/2019: written on every insurance claim form as the “Illness Start Date”. It’s been five years. Honestly, it feels like one hundred. I think mom-of-neurodivergent-kid years hit more like dog years. So, 35 years.

It’s constant, continuous effort.
Figuring, navigating, learning, applying.
Tracking, reporting, tracking, reporting.
Do the right thing. Parent the right way.
Which, is not the typical right way.
So, smile politely at well meaning typical advice.
Also, don’t care what people think.
But be nice, it’s not their fault they don’t understand.
Do this while restraining your screaming, flailing, hulkishly strong eight year old.
And keep an eye on your sad, embarrassed, scared six year old.
Don’t forget about her.
Hold up that huge shield to protect you from stares, embarrassed glances, “humorous” comments, and not so humorous judgements.
But, at the same time, mourn the fact that your shield, necessary for emotional survival, also keeps you from being known.
It’s vital, you’ll die without it.
But you are so, so alone.
Sometimes you’ll have to lower your shield.
When a secondary caretaker has concerns, wants to talk.
Field the concerns, offer advice, thank them profusely.
Spend extra money on their end of year gifts.
Communicate with doctors.
Re-tell difficult stories over and over and over again.
Maintain your composure when your difficult stories are misunderstood.
Say thank you, start again with a new doctor.
Re-tell difficult stories over and over and over again.
Change medications.
Don’t forget to track, report, track, report, track, report.
Hope for improvement.
Don’t hope too hard.
Sit neutrally in the middle.
Love, but don’t feel.
Your friends will tell you to relax.
Her doctors will tell you to stay analytical, observant, objective regarding the untold suffering of your first born baby.
You hear the phrase “you can’t make everyone happy”.
You’ll bitterly think “I can never make anyone happy”.
The extremes demanded of you are impossible.
So, up goes the shield.
Protect your peace.
But don’t isolate. It takes a village, remember!?
Call the insurance company.
Sit on hold.
“You’ll get your money.”
You don’t get your money.
Call again.
Sit on hold.
“You’ll get your money.”
You still don’t get your money.
Continue to do this in the background, ongoing.
Never leaving your to-do list.
That and tracking, reporting, tracking, reporting.
Administer the medicine, morning, noon, and night.
Follow the charts, give the rewards. For years.
Blame yourself when they aren’t working.
Be more consistent, be more clear, be more calm.
Then smile politely when someone suggests a reward chart.
Watch the childhood of the little people you so desperately longed for speed by in a wave… no a tsunami, of appointments, meltdowns, confusion, torture.
Childhood under the microscope instead of instead of looking into it.
Grieve the fact that you’ll never look back on these early, supposed-to-be-magical-days, as the golden years, the “good ol’ days”.
Loss.
But a loss you must keep to yourself.
It’s not their fault their kids are healthy and happy and they don’t even know to be grateful.
Apologize for being moody.
You’re just tired (and sad and angry).
Be thankful for the happy moments.
Try not to look at the dark clouds looming.
Be present, come on. You can do it.
Enjoy this moment… (don’t forget to track it though).
Feel yourself slipping under. There it is again: grief.
You will lose the happy moments because seeing them only reminds you of all that your little ones are missing out on.
Glimpse the real Evie, the Evie underneath it all.
And then she slips under.
Feel the violent sadness tear your heart into tattered bloody shreds.
Feel the loss of this moment.
You failed to be present. You failed to enjoy the precious few moments.
You failed.
Watch her sister come to life– so happy to have her sister back.
Then watch her deflate and self-regulate, disappointed, confused, and hurt as the illness takes over again.
Watch her shield go up.
Watch her be responsible and empathetic.
Watch her dismiss her own needs.
Watch her grow up too fast.
Watch and be proud of her.
And also, grieve.
Denial, anger, bargaining, depression, and acceptance.
Rinse and repeat.
But not for too long, you’ve got stuff to do.
Call the insurance company.
Track, report, track, report.
Schedule the MRI, the bloodwork, the EKG.
Pick up groceries.
Do the laundry.
Make dinner and pack the lunches.
Your friends miss you, schedule a lunch date.
Maybe you’ll share what you’ve written to share yourself.
You should erase all that you’ve written, stop with the self-pity.
Feel yourself erased.
Who are you if you aren’t
tracking, reporting, tracking, reporting.
Suddenly, a moment alone.
Talk to God.
What to say?
Maybe just cry.
He hears that too.