Home again ...

Home again …


First the news … HH is back in form and yesterday he and I flew home to the states for our summer vacation. A little over two weeks ago he was diagnosed with Bacterial Meningitis and needed to stay in the hospital for ten days of antibiotic treatment – it was a huge relief when the doctors reported that he could be released.

Living with him for that time in the children’s ward of the hospital was a tough stretch. It wasn’t just the tiny bed that I couldn’t really sleep in because the monitors were going off all night long or the hospital food which was – well – it was hospital food. The difficult thing was witnessing the suffering of the children who shared the space with us. We joined the small community of mothers and fathers and children during our stay on the ward and came to know each child and their illness and the struggle their families were experiencing. We supported each other, watched each others children for a few minutes while the other took a walk or made a phone call, shared meals and played together in the halls and rooms, careful not to topple the IV-drips or play too roughly with the very fragile children.

We had a roommate during our stay, a beautul, spirited four-year-old girl named Mercedes who is suffering from a rare form of Epilepsy. The day they brought her into the room she had just spent three days in the ICU and was barely conscious. I’m not an expert on the subject of Epilepsy but her condition causes her to have frequent tonic-clonic seizures, as many as 30 a day, and they leave her unable to speak or move. She wears a helmet when she leaves her bed because when the seizures come she looses all muscle control. Her doctors can’t find a cause for the seizures and they can’t seem to find the right combination of medications to control them. They have given her six months to live. The family has made the rounds of the hospitals in Europe and they are now attempting to have Mercedes admitted to the NYU Comprehensive Epilepsy Clinic in Manhattan. We are lending what support we can to make that happen as soon as possible.

HH and Mercedes became fast friends. When she was able, HH and Mercedes played together, laughed, snuggled into his hospital bed together and watched Sponge Bob and during these times Mercedes seemed to come alive, some of the cloud that generally covered lifted and her spirit was evident. Their favorite past time was playing doctor and they would take turns ministering to one parent or another, giving injections, taking blood pressure, probing, giving medication – they seemed to be acting out the full range of their experience as patients on their parents, even the more painful and traumatic procedures to which they were subjected. I imagine it was a way of coping with all the pain and fear they must have felt, never knowing from day to day or moment to moment what their doctors or nurses might require them to endure. That said, they seemed to love those in whose care they were placed, at least they didn’t seem to fear them, but I’ll never know for certain.

I am grateful beyond words that HH received good treatment and has come through this illness intact but the experience isn’t over because the image of his new friend staring up from her bed, her face twitching with the small deadly seizures that follow the more dramatic ones, haunts me even now as I write this in the middle of the night in our small cabin here in Upstate New York, far, far away from the hospital alarms and wails of frightened children in the night.