Featured Post

Chasing a pink balloon

No one chooses to become resilient. You never want to hear 'I don’t know how you managed.' But I did. I learned how from my daughter
The author's daughter, Yael.

The novelty of the ‘new normal’ has worn off.

We are depressed, anxious, and lonely, according to the media. Social isolation, unemployment, and fear of illness are causing a mental health crisis.

I mostly forget about coronavirus. Life goes on.

There are big joys and small ones.  Friends call; we laugh and share confidences. I run miles while my mind writes stories.  My Labrador nudges my leg with her velvet head.

No one chooses to become resilient. You never want to hear, “I don’t know how you managed.”

I know how it feels to be shoved off a steep cliff by gale-force winds and pinned to the ground by an invisible force.

Life has two versions: before and after.

Before, you had it all. A young family, an exciting, well-paying attorney job, and many friends.   You and your toddler waved soap bubble wands to release huge jellyfish. You finger-painted yellow and pink peonies.

Today, you plan to go to a playground. You feed the baby a bottle before heading out.

The curtains part and the after begins.

Your 2-month-old chokes and her milk shoots out of her mouth.   She breathes faster than you have heard  before. She appears to be sucking in oxygen.  A  deep groove forms just below her ribs. She pummels the air with her tiny fists.  With terror in her eyes, she pleads for help.

The doctor says to take a taxi to the emergency room.  The taxi pulls up and you jump into the back seat.

Death shoves a thick leg between you and the door. You punch him hard in the stomach. He falls backwards into the street and you slam the door.

You race down the hall.  A nurse fastens an oxygen mask around your infant’s face.

The doctor says you saved her life. You knew that.  You hear it every few months,  after you deposit your gasping baby on emergency room examining tables.

Her asthma becomes pneumonia and bronchitis. Her lung collapses.  She is admitted for several days. All day and night, you monitor IV fluids and deliver asthma treatments.  You sleep on thin mattresses on  filthy floors, next to five  children and their parents.

You attempt to return to work after the first episode. But her asthma is a ticking time-bomb. When she is in crisis,  she requires inhalation treatments every two hours.

Every single child-care provider in Jerusalem slams the door in your face.  You say that you will provide the treatments but it does not matter. No one wants your adorable, funny, sick child.

You try to tell yourself that it does not matter. Career is not everything. And perhaps this is a temporary setback. You try to establish a law practice at home. You bring your infant to a court office errand.  A clerk orders you to leave.  Other attorneys send you work but soon your child’s hospitalizations and medical appointments fill your days.

You look forward to afternoons, the Sabbath and holidays with friends. Until the pulmonologist delivers an injunction: no socializing. Your baby is exquisitely vulnerable to infection. Four hours after exposure to a friend’s cold, your baby has a fever of 104 F. The emergency room doctor diagnoses her with pneumonia. There is no internet. Your world becomes very small.

You lost your career,  you cannot see your friends, your child has a life-threatening, chronic illness, and no end is in sight.  Sound familiar?

But wait….

When she is 10 months old, she teaches you a lesson. You stand side by side in the hallway of the inpatient pediatric unit. She grasps your index fingers. A father blows a pink balloon towards her.

Ignoring the IV tethered to her body, she pushes away your hands. She takes her first steps, reaching for the balloon. Parents cheer. She grabs the balloon and giggles.

Resilience is possible. She is your role model.

When she is nine she experiences nausea and pain. After diagnostic tests that cause many adults to blanche, she is diagnosed with an incurable illness. Her doctor prescribes chemotherapy and the side effects are worse than her symptoms.

She does not complain or protest. You do. The doctor prescribes an experimental IV treatment that requires her to spend at least four hours at a hospital infusion center every few weeks. Risks include potential life-threatening reactions and cancer. Without treatment,  she could bleed to death. How do you decide for your nine-year-old? There is no choice. She stares straight ahead through the pain, trying not to cry, as a nurse plunges a needle deep into her veins.

A year later she is technically in remission but miserably sick. Too nauseous to eat or attend school. Her doctor admits her and orders that fluid be poured down her throat in preparation for tests. In the post-operative room, he is annoyed when you are not happy with the news that ‘she is fine’.

The IV treatments are a focal point of her life for the next 12 years. They become a ritual that you share.

A friend complained  that coronavirus rescheduled her daughter’s wedding. My daughter’s illnesses rescheduled her childhood.

At 23, your child’s resilience is put to the test.  Her headaches, extreme fatigue, and many unusual neurological symptoms tell her that something terrible is happening. A neurologist at MGH diagnoses Multiple Sclerosis (MS). It is incurable. There is no treatment.

You do not see how she will recover from this assault. For the first time, she is shattered into pieces.  Electric with rage. She grieves her life.

The pain is so intense.  Sharp blades penetrate your skin.

You cannot make it go away.

But it turns out that you did not have to. Now  27, she is reaching a place of acceptance. She is writing a book about MS.

And in my after,  I have it all.  Family,  friends, and a new career.

I’m alive.

Isn’t that what really matters?

About the Author
Rachael is a journalist who lived in Jerusalem between 1987 - 1996. She writes the ‘Inclusion Matters’ column for the Jewish Advocate and articles for Honest Reporting. She has blogged for Jewish Boston, Friendship Circle and the Parent Professional Advocacy League. A former attorney, she has a master’s in child development. She was an early intervention specialist and special education advocate.
Related Topics
Related Posts
Comments