It’s been a year, believe it or not, since Idan was rushed to the emergency room. The details of that day have not yet escaped our memory. Sitting in the doctor’s office and receiving the news that Idan’s X-Ray was very concerning; waiting downstairs with the stroller for the ambulance; the small talk of the paramedics as they hooked Idan up to an oxygen tank; the nurses and doctors whisking in and out of the ER running test after test; being admitted to a room in the ICU upstairs for an indefinite stay; lying in the hospital bed with Idan as we spoke with the doctors; our family members raining down on the hospital like a hurricane, providing much needed support. Although we hadn’t yet comprehended the extent to which our lives had changed that day, we understood the gravity of the situation.
So today, as we mark the anniversary of that dreadful day, we are flooded with emotions. It’s hard to pick which is strongest. On the one hand, we deeply mourn the loss of an entire year of Idan’s precious childhood to hospitals, isolation protocols, and, worst of all, a lot of pain. On the other hand, we feel enormously grateful that his life was saved that day, that he is still with us and that his PCP was caught before it got the better of him. We feel grateful that we have identified his immune deficiency so that we can treat it and protect him, and that we can prevent our future children from having the same disease. But perhaps more than anything, we feel pride. We are almost bursting with it, in fact. Our son is strong, resilient, and incredibly brave. We have asked more of him than any child should ever have to know of, and he has marched forward with such courage and determination – like a brave warrior going into battle. No matter how frightening, no matter how painful, he has endured and thrived.
A good friend told us recently that, as a doctor, she always looks at the patient for answers when the future is uncertain. Idan is remarkably strong, and even though he may be losing his graft, he is a survivor. A year has passed since he was hooked up to a ventilator, and over the course of the last year, he spent a total of 60 days in the hospital, spent six months away from home, and endured weekly infusions and hundreds of tests and clinic visits. Today, Idan is the size of a child twice his age, can run circles around his parents, is outgoing and social, is a creative artist, and even has his own repertoire of jokes he likes to tell. If you passed him in the street, you would never know what he has been through, and you would never know he takes an average of 13 medications a day and has a severely compromised immune system. So even though today is a sad day, filled with longing for what could have been and what should be, it is also a happy day. Idan has somehow managed to chart his own course, and we could not be more proud of our little boy.