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February 27, 2013

“You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.”
― Dr. Seuss

I’ve lost my stride. When all of this parenting business started, it felt a bit like we eased into it. I was fresh out of college when my son was born, so there was no job to hurry back to. We breastfed, so there was never the flurry of rushed bottle sterilizations and formula mixing. It was, still, life with a newborn, but it was happy and it was peaceful.

Then along came number two. I remember our pediatrician warning me with a smile before we left the hospital with Joyce that this first night home would not go smoothly, and not to expect too much greatness from myself. He was right. My first night home from the hospital with my second child also turned out to be my first night home alone with my two children. By the time I collapsed into bed, all three of us were in tears.

But I found my stride, we figured out a rhythm, and we were a perfect little family. Still, I was excited to add just one more, so happily, we did. But this child was born into a completely different kind of family than her brother and sister. By the time Mary was born, we had received our first autism diagnosis, so frankly the news that she was moderately deaf simply didn’t phase us as much as it might have another family. Only two months officially into the world of special needs parenting, that word, autism, had already changed us. It had slammed things into perspective. It had threatened our marriage and suddenly somehow built it up exponentially stronger. It taught us to adapt on the fly. So Mary was a little deaf. That’s what hearing aids and sign language were made for. We would adapt. And we did.

Life was busy, between therapists and school, and outings. We managed. We juggled. We adapted. When I was in high school, I was on the swim team. Besides being excellent exercise, it taught me to pace myself. It taught me about keeping a rhythm. Having asthma meant that I had to maintain a rhythm of strokes and breaths, because if I changed my stride too quickly, I would end up gasping for air in the middle of the pool, and the rest of the team would pass me by. If I started out a distance event at a sprinter’s pace, there was simply no way I would make it to the end in a respectable time. I have always felt that this pertains to life in general as well. I know all this. But it seems that is exactly what I have done. I have had to change my pace too many times. I started off this parenting starter’s block in a panic, like many special needs parents, sprinting, all out, full speed ahead, face down in the water, never lifting my head for a breath. And now I find myself, stuck in the middle of the pool, gasping for air.

The succession of potential diagnoses for Mary haunted me. Every time a doctor would suggest a new possible progressive terminal disease, I would research the hell out of it. I would suddenly find myself identifying with the parents of these other children who had confirmed diagnoses. I would quietly read their stories and find myself cowering in fear that their child’s story might be Mary’s as well. In my heart I became one of them. Until a test would come back negative, and thankfully wake us from that nightmare, often only to plunge us into the next. And each time, it broke my heart and lifted my spirits at the same time, to discover these communities of parents who had bonded together over their children. The spirit with which they faced these incredible challenges affected me deeply.

In the midst of the constant medical drama, we managed to receive two more autism diagnoses. So three times the fun, and more than three times the therapy. We shifted gears. I moved into hyperdrive. I was constantly floating between therapists, doctors, children, teachers, all the while still trying to be just “Mumum” (what my kids call me). I was on top of everything. I had color-coded calendars on my iPad, for goodness sake. I was super-mom, trotting around town in my bat mobile, cleverly disguised as a gold-fish-crumb-covered minivan, driving my kids all over creation for a happy mix of outings to the zoo, the lake, the mall, the hospital, the therapies, the doctors and the different schools.

I can’t pinpoint exactly when it happened, but sometime within the last few months, I hit the wall. I ran out of steam. I haven’t slept, I mean really slept, in a very, very long time. My husband started noticing that we were tearing through coffee, and that there was usually an empty wine glass left on my nightstand. To compensate for the lack of sleep, I’ve started drinking insane amounts of coffee. And to quiet the panicked thoughts at night (and counteract the caffeine!) I’ve been indulging in a glass of wine and a square of chocolate at night. I could tell myself, that this is simply heart-healthy, but it’s comfort, and to some extent necessary to shut off my over-active mind.

I haven’t been writing much. I haven’t been doing much of anything for myself. But worse, I haven’t been able to keep up with that fancy color-coded calendar. Those new activities, like Girl Scouts, that don’t keep a completely regular schedule have floored me. Schedules are sent home, but if I don’t enter them right away, they get lost in the enormous pile of papers that comes through my door each day. So, yesterday, Joyce’s Girl Scout troop was going on a field trip, only her burnt out mama didn’t know about it because the permission slip was probably lost in a stack of papers somewhere. The teacher told me she could go, “she’ll be fine,” she smiled. Didn’t she get it? I can’t just spontaneously send Joyce across town without me, without her behavioral aid, to go to a public place and look at flowers. It was a floral conservatory they were visiting. Flowers. That is the one thing that reliably causes Joyce to elope. Flowers. She walks out my front door to pick flowers….So I couldn’t let her go. She probably would have been fine, but I just couldn’t take that chance. I hadn’t even put her tracking device or her temporary tattoo with my phone number on her. All because I couldn’t get it together to see on the schedule that something different was happening that day. If I had known, I could have developed some sort of plan. Something.

Our house is a constant mess. I can’t keep up with the laundry, and now we are getting ready to move on top of it. Cleaning, packing, therapists to rearrange, schedules to keep, doctors to see…. I have lost myself in the shuffle. I have broken the rhythm. I am gasping for air in the center of the pool, searching for something to hold onto….

And then, there in the darkness, I can hear it. Laughter. The giggles from under covers of Joyce and Troy, as they hide from me in their room, pretending to be asleep, their joy giving them away. The sweet, high-pitched breathless squeals from Mary, breaking the late-night silence. She should be sleeping, but she is laughing. She is joyous. Joyce’s puckered lips waiting for a sweet kiss good night. The sudden, unexpected hug from my son at the mere thought of moving to a new house where he might have his very own room, and a bigger yard to play in. The silent invitation to dance with Mary while dinner is cooking, and she cocks her head to one side in a playful, expectant look.

And finally, once again, I am finding my breath, and regaining my stride. I look at them, and suddenly, I feel powerful instead of powerless. I find the strength, and put my face back down into the water, and I smile.

In the external scheme of things, shining moments are as brief as the twinkling of an eye, yet such twinklings are what eternity is made of — moments when we human beings can say “I love you,” “I’m proud of you,” “I forgive you,” “I’m grateful for you.” That’s what eternity is made of: invisible imperishable good stuff.
~Fred Rogers


2 Comments leave one →
  1. Life&Ink permalink
    February 28, 2013 4:06 am

    You have been on my mind since I first read your post this morning. This touched me not only because it was so beautifully written, but because you expressed so many emotions I have felt at one point or another throughout the years. And now my babies are 21 and 17 and although I know you can’t believe it, there will be a day where you are where I am now. Enjoy the moments and soak it all in, for in time so much of the memories of the most challenging days will fade away and you will be left with the most wonderful feeling of contentment when you look at the incredible human beings that represent your life’s work. And funny you mentioned swimming for I starting lap swimming in my 30’s and of all things, learning how to properly breath while doing the freestyle is how I taught myself to overcome panic attacks I was having. Breath, just breath. 🙂

    • February 28, 2013 2:20 pm

      Thanks Charlotte. I just have to keep reminding myself that this is a distance event, not a sprint. 😉 Breathing is so important, and it’s obvious that I haven’t been taking enough breaths. But it’s good to have friends like you to remind me to step back and see the big picture. The hard work is paying off. And it is nice to sit back and enjoy the perfect little people that they are. Thanks. 🙂

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