Normal chaos

Rapha hugging a giant Teddy bear

Not too sick to hug the bear at the pediatrician’s office

So this is what it’s like when it’s not like this all the time…

That’s what I pondered before falling asleep the night before last. Raphael had been well more than not for long stretches over the past year, so when he got sick this time, it no longer fit our newer new normal.

While Facebook friends complain that it’s too snowy or too unseasonably warm or too whatever, I’ve been marveling about what life’s like as we’ve made it through another respiratory illness season without middle-of-the-night visits to Children’s Hospital. It’s amazing how do-able and emotionally unruffled – yet still overwhelming – motherhood can be without repetitive episodes of suctioning mucous, congestion-breaking back pounding, tripping over oxygen tubing, and stumbling around on long-term sleep deprivation.

I’m appreciative every day.

Raphael has shot up two sizes since his last surgery a year and a half ago, gets around without tripping (much) and even climbs stairs. He is learning and developing at what seems lightning speed compared to his arduous beginning.

I wonder when I read about adults with Down syndrome who function at a 4-year-old level how that could be. My 4-and-a-half-year-old’s growth has such velocity that I can’t imagine it will suddenly halt as if he took up permanent residence in Neverland.

I pinch myself to remember that his typically developing peers are making gains at a much more upward trajectory than my boy, but it’s hard to see disability when I’m so focused on progress – and on promise.

One day after I picked up Raphael from preschool, he announced from the backseat, “Raphael thinking.”

No matter that he talks about himself in the third person, that many syllables in a single utterance is a wild success for a kid like him. (At a symposium on speech delays in the Down syndrome population, I learned that expectations for a 15-year-old might be the use of four-to-five word sentences. Already my child pops out statements of that length at least once a week.)

I glanced in my rearview mirror at him and asked, “What are you thinking about?”

“Life,” he replied matter-of-factly.

“Oh, what about your life, Raphael?” I inquired.

“Opportunities,” he said.

My heart swelled. Big word: “opportunities.” Big concept.

Yes, that is my dream for my children: that they will have many opportunities in life.

But sometimes, after a week like the past one, old fears entrenched deep in my nerve cells like hidden trauma stores open for business.

Raphael woke up vomiting last Wednesday at 3 a.m. His old pattern of secretions running down his throat causing coughing, gagging, puking, crying, more puking and so on returned. I kept him home from school and pushed sips of fluid into him all day without worrying about what was to come.

It used to be that his every childhood sniffle turned brutal – longer, stronger, and more worrisome than my other kid’s bouts with a runny nose or a rumbly tummy. But Raphael has been the healthy one lately. Over winter break, both boys got the flu, but Raphael bounced back in a few days while Elijah, surprisingly, was miserable for the entire holiday period.

For the next four nights, beginning a week ago, I put Raphael down in my room so I could listen closely to him breath (not my favorite pastime). He cried and gagged until I held him upright in a chair so he could get some rest. I got little.

As all parents know, when one is up most of the night with a sick child, it messes with one’s brain during the day. Everything that needs to get done gets compressed into not enough time. There’s extra laundry and extra effort to get some calories into the sick child. Work piles up. Things get missed. Rescheduling begins.

Saturday afternoon, I escaped to a yoga class (my sanity savior) during Raphael’s nap. I challenged myself to repeat a tricky arm balance one too many times (I suppose to unfittingly prove my strength). I toppled forward out of the pose and onto my head – hard. The fall wrenched my neck and bruised my knee, but it did more than that to my heart.

Right there on my yoga matt, I suddenly time traveled to Raphael’s first couple of years when my only one-hour break most weeks was yoga class, where I’d sit still and breath, and the simple quieting of my overloaded mind would be enough for cloistered feelings to show themselves. Emotions would overwhelm me as streams of hot, quiet tears became permanently embedded into my matt.

Adding a sick kid to the stress of living a life with too much to do, too little money, and too many other family challenges is enough to rock anyone’s world, but if the trauma of relentless days gone by lays dormant, I now know that it can be jolted awake by a bump on the head. So once again tears began to soak my matt, and I felt anxiety trying to erupt.

During savasana, which literally means “corpse pose,” when everyone lies silently supine and tries to empty her head at the end of class for a few minutes, my yoga teacher slipped toward me rubbing an overpowering eucalyptus oil briskly into her palms. She crouched behind my head and stroked the back of my aching neck.

Having another person touch me so genuinely opened another gate, and deeper feelings arose as I thought about how long ago I’d felt such a kind touch and how distant my experience of a loving relationship is. Snuggling with my kids is wonderful, and my husband will wash dishes or watch the kids so I can get to yoga, but neither is the intimate adult partnership and connection I long for.

One thought after another about the hard stuff that’s current in my life began to swarm in my head as class ended. While others rolled their matts to go, I sat in lotus position facing the wall and just let myself feel.

I suppose that was my real yoga practice for the day.

As each painful thought arose, I invited it briefly then let it go until I could gather my belongings to leave.

I felt a bit undone but also more alive as the effect of that moment of being present lingered the remainder of the weekend.

When Raphael’s temperature soared to above 103 degrees Sunday night, the fear of pneumonia and that terribly frightening underlying question: “What if?” was right there, ready to nag.

At the pediatrician’s office Monday morning, I discussed strategies and options – antibiotics, oral steroids, chest X-ray – and made a plan, ignoring that my son had dropped nearly 3 percent of his body weight in the past five days. Working with Raphael’s doctors is a team effort. When I get to the place where I am unsure of what to do for him next, the doctor’s trust in me helps me trust myself.

I decided to double dose Raphael on his daily asthma controller, continue the liberal use of his rescue meds, drop mullein oil into his infected ear and give it another day. It was the right choice.

The next day, my little guy was fever free and ate an entire chicken tender, French fries, and an ounce of strawberry gelato with only one major gag. (I know, it’s not health food, but it was the first substantial thing he’d agreed to eat in days.)

Raphael went back to school yesterday, just a week since his illness began.

The quiet swelled around me as I lay alone in bed two nights ago, with Raphael tucked into his own little bed in his own room he shares with his brother. All those long nights listening for disruptions in Raphael’s labored breathing, all those months of both of us catching every bug under the sun, all those times I suctioned his airway while feeling the ache in my own chest were long ago.

Now when a night like that happens in the midst of blessed, ordinary nights, I’m thankful it catches me off guard.

It’s hard to imagine how we lived through it when it was all the time.

Rapha in goggles sitting near pool, funny

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About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Down syndrome, Joy and Pain, Motherhood, Parenting Special Needs, Reactive airway, Sleep Deprivation, Stress and tagged , , , , , , , . Bookmark the permalink.

6 Responses to Normal chaos

  1. Julie says:

    Your post took me back to a time when my son with DS was about 18 months old and while looking over the calendar filled with appointments and etc… I asked my husband – when will our life go back to normal? and sadly he replied “this is probably our new normal”, and Dylan is now 12 and we don’t have the constant worries about his health (as he is healthy now). I really appreciate your posts.

  2. Peggy says:

    WOW!!! How you put all your fears and strengths and appreciations and vulnerability and so much more into words is…. I can’t find the right word…. just WOW! I love the part about Rapha thinking about opportunity. YOU are an INCREDIBLE MAMA and I love and appreciate YOU!!

  3. Patty Love says:

    What a powerful and beautiful post. Love you!

  4. Pam Mellskog says:

    Hi, Elizabeth!
    Wish I could have snagged you to go to TCH with me over the weekend to visit Baby Jacob.
    Missed you!
    Just caught up on your blog tonight.
    As usual, I am so thankful for your posts.
    This line is my favorite one in this post:
    “I pinch myself to remember that his typically developing peers are making gains at a much more upward trajectory than my boy, but it’s hard to see disability when I’m so focused on progress – and on promise.”
    Super attitude!
    Love you!
    PM 🙂

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