Month: April 2015

Time Marches On, But A Mother Never Forgets

Puppet Show - Day 1 in the PICU

Day 1 in the PICU, April 10, 2013

“It’s going to be a rough two years, but after that, he’ll be cured, and everything will be fine.”  It’s a statement I heard multiple times from well-meaning family members in the corridors of the pediatric ICU at Cornell Hospital.   I held onto those words tighter when I looked over at my darling baby boy attached to the vent.  Even tighter when I would wake up in the middle of the night to find a team of nurses surrounding him, one nurse straddling him on the bed furiously pumping air into his little lungs when the ventilator failed or when a tube got yanked out of his nose.  I held onto those words for the next two years, and here we are.  It’s been a rough two years, and he’s not cured.  But everything is starting to feel more fine.

Just starting to get over his pneumonia

Week 2 in the PICU, April 2013

When I think back about our time in the PICU, there are a few more potent memories.  There’s the memory of the masks, gowns, gloves – constant fixtures in our days in the PICU.  Yelling at the doctors when they refused to let him eat or drink in the first two days, then sudden comprehension that they believed he would be intubated, and could not risk aspiration.  The conferences with the doctors where they explained the possible causes for his lung failure, and the trial and error diagnoses that began to mimic an episode of House.  The impossible torture of not being able to give my sweet baby boy a gentle kiss for fear of sharing germs or tripping over life-saving tubes.   Leaving the hospital for the first time in several days, collapsing on the floor of my childhood home choking back the sobs that I denied for so long, seeking comfort and strength from my family so that I could return to Idan’s bedside, renewed. 

Most potent for me, however, is the memory of us leaving the hospital with Idan.  After three weeks spent in a tiny box filled with the constant hum of machines, we were allowed to take Idan home.  After his diagnosis with PCP, we were hit again with a second diagnosis of a severe immune deficiency, and informed that he would spend his life in constant fear of being re-hospitalized for new and (if you could believe it) scarier illnesses as his immune system would simply fail to adapt to the germs around him.  Yes, I remember leaving the hospital vividly.  Holding Idan tightly in my arms as we walked out of isolation into the busy corridor of the PICU.  The sounds of coughing, sniffling patients, children playing in the waiting area, five people waiting for the elevator.  The same hospital that cured him was now a minefield.  I tightened my hold on Idan as the elevator doors opened, trying to nestle his face into my shoulder to protect him from any exposure once crowded inside.  When the elevator doors opened, Akiva and I made eye contact, and as if on queue, sharing the same instinct, we started running.  We ran through the main floor, dodging patients and hospital staff.  We ran all the way to the car, out of breath by the time we sat down.  Idan was safely in his car seat, and suddenly “safe” took on an entirely new meaning.    

And we all know how the rest of the story goes.  Two years searching for a cure, building an army, learning the hard way how strong we all could be in the face of adversity. 

I’ve always believed that time is not quite linear.  Yes, it marches on ever steady, but there are moments and events that are forever linked to you.  Those three weeks in the PICU are long gone, time having granted us two years of wonderful memories and joyous occasions since then.  But we keep circling back, and carry those memories with us every day.  Because when we were rushed into the hospital two years ago today, we were a normal happy family, and the moment we walked through those doors, we became something new.  We found our strength, our courage, our fight.  We became a force to be reckoned with.  We’ve persevered despite all odds, and Idan is a blissfully happy and brilliant child, who is surprisingly aware of his condition and limitations but never lets that stop him from feeling joy.  And the next two years will be another rough two years, and we hope and pray that we’ll have a cure.  Today, we’re stronger than ever, and everything is going to be fine.

Two Years Since The World Turned Upside-down

Turn for the worst

Week 1 n the PICU, April 10, 2013

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April 2015

It has been two years since that awful day we rushed our 8 month old son to the ER with an oxygen mask. That April was much warmer than this one, and we had spent much of the time in the two weeks leading up to that day outside in the park and playground. He had just started enjoying the swings and there was always a playground stop after the visits to the pediatrician leading up to that fateful day. I am still amazed by the little boy’s resilience and happy mood. Idan was breathing 80 breaths a minute while the Pneumocystis pneumonia (PCP) was quietly destroying his lungs, but he was as happy as could be and could not wait to play.

It has been two years since we watched our son intubated in the ICU  while his lungs gave in to the PCP, not knowing if he would ever recover. We spent three weeks isolated in that room hoping to wake up from a nightmare that was just beginning. We spent three weeks researching PCP survival rates, and immune deficiencies, trying to piece together the mystery of how a healthy happy boy could suddenly fall so ill.

The Idan Do

The Idan Do Campaign September 2013

It has been two years since we first heard that words Hyper IGM and CD40 Ligand Deficiency, since our son came back to us and we settled into our isolated life in the center of the busiest island in the world. Our life was changed forever, and our dreams crushed as we faced ever growing uncertainty as to our son’s survival. It has been two years since our baby inspired us to become better people, and gave us the strength to make the hard choices we faced.

It has been two years since our son galvanized thousands of people to open their hearts to our family and form an army of supporters to fight with us. It has been two years since our son empowered us to become experts in his medical condition and gave us the resilience to carry on with our lives. For it is Idan’s resilience, in the face of all that he has endured, that has kept us going all this time.

Your average toddler during this period would learn to walk, talk, play and jump. They would start asking questions and start learning some letters and numbers. They would learn to kick a ball, do puzzles and stack blocks. And they would grow taller and bigger and brighter. It is all a parent can hope and wish for their child during this age.

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October 2013

Idan reached and surpassed all these milestones despite Hyper IGM. He laughs, entertains and sings despite having spent over 65 days in hospital rooms. He learned the ABC’s and his numbers while getting prodded and poked thousands of times. He can put together a 54 piece puzzle of the USA all on his own despite receiving three types of chemotherapy. Nothing has slowed him down or taken away his constant excitement and curiosity, not even the social isolation he has had to endure.

The road ahead is long and rocky. Idan will have to face another transplant, more isolation and many more pokes, meds, and surgeries. It will be more than two years until the cure we hope for him will be in our reach. But despite this, we know that Idan will continue to thrive and develop and inspire us to carry on. He is truly our light and our guide throughout this journey and we will not let him down. Idan is My Hero!

 

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April 2015

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