“In case of emergency, put your own oxygen mask on first, then put on your child’s.”

You hear that message every time you fly.  That message rings true as a metaphor for special needs parenting.  Take care of yourself so that you can be there for your child. 

But keeping up with the challenges of caring for a special needs child is demanding, making yourself a priority seems impossible – maybe even a selfish in light of your child’s needs.  Believe me when I tell you that not only is it possible, but it is vital.  I learned the hard way.

Veronica didn’t sleep through the night for her first 4 years.  Not months, years.  And it wasn’t that she woke up a few times during the night, she was in pain and we couldn’t figure out why, she’d start crying and was unable to stop herself.  The crying could last hours.  My husband and I took turns, but she wanted me, so most nights I’d hold my hurting baby girl close while sitting at my computer trying to keep up with my job.  I saw the sun rise more times than I can count.

During the day there were doctor appointments, therapies, business meetings, deadlines and general family happenings.  My oldest was a toddler, and I was determined to make sure that both of my children had happy childhood experiences.  We took advantage of every opportunity to find fun and celebrated every occasion knowing life was precious.  In the middle of this, my dad battled cancer and Veronica had heart surgery.  There was a lot going on.  I took care of everyone but me.

To be honest, I thought I’d tried asking for help.  I’d hired a nanny when Veronica was born, but it was tough finding someone comfortable with Veronica’s needs and discomfort.  I had a cleaning service, which was really helpful, but household chores still piled up.  The only time I left the house was for business or my family.  I never got out on my own, there just wasn’t time and I was exhausted.  Time passed and we kept treading water.  Every day I lost more and more of myself, but I pushed on, not seeing another option.

And then one day I fell apart.

What at first seemed to be a virus became violent and consuming.  In just over 2 weeks I’d lost almost 20 pounds. I know what you’re thinking, “Sweet weight loss plan, do share!”  Believe me, you want none of that.  The pain was excruciating and constant.  I couldn’t keep any food in me, one way or another it exited my body.  Super glam, right?  I was severely dehydrated and needed IV hydration multiple times.   Too weak to walk, I was wheeled into doctor appointments in a wheelchair.  The tests were inconclusive.  I’m a pretty strong person, but finally one Sunday morning 3 weeks in to this thing I was too weak to stand on my own and was overwhelmed by the constant intense pain.

I whispered to my husband, “I’m not sure I’m going to make it to tomorrow.” 

Minutes later I heard him expressing his worst fears to the consulting nurse over the phone.  He bundled me up and carried me to the car, driving straight to the ER, telling them we weren’t leaving until we had an answer.

More tests were taken and I was referred to a gastroenterologist.  The diagnosis was confirmed.  I had severe Crohn’s disease; an auto-immune disease of the intestinal tract that was, in my case, brought on by fatigue, stress and poor nutrition, built on a family history of intestinal issues.  I was put on high doses of steroids, anti-inflammatories, and anti-nausea medications and was told that once I stabilized I would need to go on a heavy medication to manage the disease for the rest of my life.  The next several months continued to be consumed by severe pain and intense gastrointestinal distress, as I waited for the meds to work and my body to begin to heal.  I was too weak to walk from room to room, let alone lift and care for my special needs child.

It was awful.  Horrible.  Seemingly endless.  And that’s what it took for me to learn to put my oxygen mask on first.   I have to learn things the hard way sometimes.

My friends and extended family jumped in and change was forced.  I learned that Veronica had grown up a bit.  Her heart repair had alleviated a lot of her pain and stress.  After the surgery she hadn’t wanted me to put her down, and I wanted to be there for her.  Because Veronica didn’t have typical milestones like sitting up, crawling, talking, feeding herself, etc, I hadn’t realized that she had been maturing in other ways.  She was able to be more independent.  Finally being outside of the spin-cycle of survival I saw things from a new perspective, realizing that there needed to be balance.  Taking care of myself wasn’t just a luxury, it was a necessity.

Faced with unsatisfying answers for disease management, I started looking into alternatives and over time God created a pathway to healing.  Once stable, I started a program to rebuild my body that focused on eliminating foods that my body had a hard time processing, added specific high doses of vitamin supplementation and worked on stabilizing my immune system.  I started walking every day, just a block at first, then building up to more, eventually joining a gym and working on getting stronger little by little.  My body had atrophied to a great extent, getting going again was HARD at first, but it got easier with time and persistence.  The human body is resilient.

Putting on your own oxygen mask first isn’t just about caring for your health; we are body, mind and soul.  I started making time for ways to feed my own passions and letting people help me without feeling guilty.  It takes constant practice.  When Veronica has an extended hospital stay and things are intense, I get exhausted and start to fall in to bad habits, it becomes a slippery slope downhill.  I have to push hard to get myself back on track.  Other times she’s so compromised that I need to put all of my energies into holding her oxygen mask on her for a while.  That’s the reality of being a parent to a special needs child.  I’d like to think I’m a little smarter about balancing life now, I know life feels better now – I’m enjoying it in ways I never thought possible prior to my illness.  Taking care of myself makes me a better parent and wife, it turns out that making my health a priority becomes an act of love to my family.