Sara & Mommy cross the first of what we hope to be many, many finish lines.

Wow, do I ever hate the phrase, “take care of yourself”.  I’m a nurse.  A blue-blooded Co-Dependent.  A MOM.  Take care of myself?  WHEN? HOW?  After I’ve done the 20 loads of laundry and washed the dishes for the 4th time in a day, made it to the grocery (again), and cleaned up Lord knows what my family has tracked on the floor I just mopped; after I’ve fulfilled my commitments outside of the family and checked in on my extended family and thought ahead for birthdays and special events; and I think we all know if Rapture ever does arrive, my ironing pile is going to be brought up at the check-in table. And do I hear the cat puking again?!  Because I’m going to kill that cat and take her sorry butt with me.  Let her explain to St. Peter why I can’t find the time to scrub my bathroom floor (which Sara very politely asked to never to do again because apparently Mommy loses too much hair for any ONE person to mop).  I felt bad for the poor squirt because she’s right, so I simply said, “Deal.”

“Take care of yourself” conjures up visions of women lounging in white robes at Spas, sipping Passion Fruit teas and eating Greek Yogurt, talking about how their neighbor’s RV is such an eye sore and parking it in the driveway is against covenants.  Stay at Home Moms don’t make it to the Spa very often, I’ll just put that out there right now.  Even if I could carve out the time to make it to the salon, I’d have to arrange childcare.  Oh wait…and print fake money.  I remember one particularly hard day when Sara was a baby and my Mom came bopping into the house and offered to watch her so I could go to the salon (she offered to pay, which was awesome).  She told me she kept seeing these bright, happy famous Moms all over the magazines, and didn’t they have such nice hair while holding their new babies?  Such cute outfits they wore!  I wanted to take that $75 and serve it to her on a sandwich.  If I had a day nanny, a night nanny, a personal assistant, a stylist, a PR Rep, a housekeeper, a cook, a trainer, and a gardener, well HELL, I might look showered too!  As it so happens, getting out the mailbox once a day feels like a luxury, and my hair?!  It’s falling out from stress anyway…let’s not waste money at Aveda.

But in the end, after facing the music with Sara, I realized I had indeed, not taken care of myself.  As of last fall, I was falling apart.  Since giving birth to my precious and perfect Special Needs baby girl, I had been diagnosed with cancer…twice.  Neither came close to killing me, but there were days I wished I could throw in the towel.  After spending my entire life in the same size pants, I woke up 20 pounds heavier than my wedding day.  But worst of all I was anxious ALL THE TIME.  I found myself ruminating on every last possible crazy scenario.  I worried about the girls incessantly, and I’ll just tell you that list of fears is too long for anyone.  I was driving myself crazy and I was certainly taking this family down with me.  I looked at Greg one day and said, “ENOUGH.  Enough already.  I need help.”  Here is my version of “Taking Care of Yourself with a Special Needs Child”:

1) I went into therapy…FOR ME.  I don’t know about you’all, but I wasn’t born with a natural skill set called “Parenting a Special Needs Child”.  Hold the phone, I have a good one, how about “Keeping a Marriage Strong While Parenting A Special Needs Child”?  I hear a collective Amen from you already. It can be done, and certainly better than I was doing it, but I had to ask for help first.  I sought counseling in my mid-twenties after my parents divorced, and it made a world of difference.  Over 10 years later, I wondered if my therapist would remember me.  Apparently, I leave a lasting impression.  I started therapy again late last fall, and it has made all the difference.  I need to get my head around what it is to LIVE THIS WAY, and DO THIS THING, and learn to give myself A HUG EVERY ONCE IN A WHILE. I needed someone not madly in love with me to tell me I’m OK, and it’s going to be OK, and even if it’s not…OK.  I highly suggest this form of “taking care of thyself”.

2) I asked for real help with Parenting.  You’ve heard me rave about this success here and here.  Taking the time to learn a few things changed my course.  That was the moment I “got out from under”.

3) I go to bed.  Believe it or not, it was easier going back into therapy than going to bed on time.  It is not in the American culture to sleep.  We rest.  We veg.  We eat a lot of pizza while engaging in the resting and vegging, but we do not sleep.  I simply don’t have the emotional energy to parent at this level without a good night’s sleep.  I short-circuit all over the girls so much faster when I’m sleep deprived.  I didn’t realize how crappy I felt until I stopped feeling crappy.  I had become accustomed to always feeling sluggish…horrible stuff.  I fight myself every single night because I am a night owl, but for every night I lose and hit the hay, I’m grateful the entirety of the next day.  Special Needs kids are atrocious sleepers, and I’ve written about this life-saver before: melatonin.

4) I started being gentle with myself.  I stopped being angry with my body for not being stronger than cancer.  I stopped being angry that I couldn’t figure this mess out on my own.  I started sending loving messages to my broken skin and gut and whatever other body parts were refusing to get in line and act half their age.  I started washing my body in better food and more water.  I got real with my vitamins.  Cancer, even the minor forms, is a big wake up call.  My body was begging for some love, and food and sleep were the biggest meds I could find.

5) I allowed myself to grieve.  Grieving is a funny thing.  We all put it off, knowing it will suck.  But pushing it aside and then trying to do it in bits and pieces tends to just drag out the pain.  Grieving is a very healthy gateway to acceptance, and without acceptance, nothing is getting done.  I was in a dark place for a while.  I wasn’t grieving the loss of the I-gave-birth-to-the-Prom-Queen dream, as some actually had the balls to suggest to me, but rather, I grieved the limit on possibilities, real or imagined.  I grieved the murky and uncertain work that lie ahead.  I grieved the rocky terrain stretching out before my tiny little bird who had already survived too much.  I wasn’t sure I had the power to make the road smooth for Sara, and I was scared to my bones.  Parenting a Special Needs child is like ramming your body against a concrete wall, over and over and over, trying to give them the best of an already limited set of opportunities.  It’s emotionally and physically exhausting.  It’s not what we signed up for.  I grieved that reality. I cried A LOT.  Greg told me to feel free to mourn the normalcy we’d never had, and you know what?  I did.  It felt awful.  And then one day it didn’t, so I got back to work.
6) Get a hobby, get some balance, and get real with the emotional pricetag of my days: having the ability to cook and sew and write have saved me…truly…you see it here day after day.  There must be a “me” in this journey, and there must be an expression of joy.  Because I do have so much joy.  Even on the hard days, I end the day grateful that God entrusted us with one of his more fragile souls. What was he thinking?!  But as with all things, balance is the key to good life.  I’d be just as happy volunteering forever and sewing all day long…but then critical things get missed, like clean underwear and food in the fridge.  Had I known what this year would hold, there are many things I would have never put my name to, but no one can see into the future.  This year was a lot about simply doing our best with what we had.  Next year I’ve pared down on my leadership commitments and I’m carving out more space on the old calendar.  I’ve learned that every activity doesn’t just have a time commitment, but an emotional commitment as well.  Facing your child’s therapists week after week is draining.  Doing therapy day after day, pushing your child to their limits, is draining.  Talking with teachers and pediatricians and explaining your story to friends and the ballet teacher who can’t understand why your child curls up in a ball every time the music is too loud…is DRAINING.  I only have so much emotional energy to devote to any given day, and I’ve learned to budget it accordingly.  Some days I just don’t make dinner.  I pre-cook on therapy appointment days as much as I can, so that after therapy, getting dinner on the table takes minimal effort.  I allow myself time to just sit with a glass of wine and decompress.  I make sure my week has empty spots where I can catch up or recharge.  I don’t give a crap about the ironing anymore.  I try with all my might to save some emotional energy for Greg, and remember that he is not just my partner on this journey, but my best friend as well.  Loving him and being present in my marriage is the best investment I can make in Sara’s future.

7) And finally, I’ve let go of the limit argument.  None of us really know what our kids will be like in 1 year, let alone 20.  The really good doctors and therapists have told me to believe in all things.  Sara has challenges.  Sara has her own mountains to climb.  But Sara also has gifts, and those gifts might just carry her over the mountains.  Someday, this might just be a memory.  It’s too hard to say.  On a particularly hard day with Sara last week, I happened upon her writing assignment hanging on the wall of her classroom.  Her handwriting was tortured; some of the worst I’ve seen since we started therapy.  I was deflated because just 2 days prior we verified a 40% improvement in her tunnel vision and a 30% improvement in her convergence disorder.  She is finally starting to see!  A moment later, Sara grabbed my hand and pulled me over to her Solar System project, drying in her egg carton.  There, in perfect order, were all the planets, completely accurate in relative size, and painted in not just correct color, but shading as well. Her little earth had both land and sea.  Saturn had rings.  She bemoaned poor Pluto, the dwarf planet.  She talked at length about her trip to the Observatory.  Science is her one true academic love, and she seems almost limitless in her ability to understand it.  A moment later she told me she was exhausted and tried to take a nap behind a book shelf, in the middle of a Daisy Scout meeting. That’s the juxtaposition of a twice-gifted child: she cannot write the simplest of words and loud events are nearly impossible for her to manage, but she can effortlessly describe the difference between the Gas Giant and Ice Giant planets.  Life is weird.  It’s time I learned to roll with it.

I wish this list had more fru fru drinks sipped on a cruise ship, staring out at an open sea, but this ain’t The Love Boat.  This is life in the Twice-Gifted Lane, and while it tends to be short on Spa Days, I find it’s rich in hope.  I hope you find these words useful or helpful.  I hope wherever you are tonight, you feel less alone after sharing this space with me.  I wish for you all things possible.  Godspeed my friends.