Sunday, January 09, 2011
Less than two days later, my world fell apart. I never understood how parents of a disabled child feel, but now I do. They say that you have to first mourn for the child you had expected before you can accept the child you got. That was certainly true for me. I went to appointments with him, was told that he could never play sports, work any kind of manual labor. I cried while I nursed him.
We brought him home and Kinneret called him "didi" then "baby." She wanted to hold him all the time, touch him all the time. She was so happy with the baby we'd brought home for her.
He had colic. I was exhausted.
I went through surgery with him, in the hopes of rescuing vision in his eye, and it failed. The doctor pushed for more surgery while telling me that there was no hope. I called experts from the United States and spoke to my pediatrician. We didn't go through a second operation.
Ephraim had the worst colic I've ever heard of. For five months, he rarely slept more than an hour at a time unless he was nursing. I carried him in the wrap carrier, sometimes nursing while I walked around. I waited for opportunities to share a meal with my parents so that one of them could hold him while I ate.
We went to the Vardizer clinic in Haifa for a prosthetic lens to help his eye socket grow and his face be symmetrical. The doctor there was the first person who told me my son has beautiful eyes. He told me that my son could be anything except three things: an air-force pilot - he can be a commercial pilot, though; a crane operator; a driver of a semi-trailer. He told me that the young lady who'd just come into the waiting room, the one with beautiful big brown eyes who had just finished army service as an officer, started out with an eye just like Ephraim's.
Yaakov's mother came to visit and rocked Ephraim endlessly while I tried to ready the house for Pesach.
Ephraim had an abscess and needed surgery again, this time in Hadassah Har Hatzofim.
My fibromyalgia flared up so badly that I could barely sit up. The flare up lasted for months.
Neighbors called social services because there was a baby crying so much of the time. The social worker came in, and everything was quiet. When I put Ephraim on the floor to play with his toys, he screamed. She understood.
Shlomo came to visit.
Kinneret called him "Epharim."
My mom and I (and Ephraim) went up to Haifa so often the taxi drivers at the train station got to know us.
My friends Jeremy and Kelli got married (again).
I took Kinneret for development tests because her speech was behind schedule.
Ephraim got his painted lens and looked cuter than ever.
Kinneret turned 3 and had a birthday party at gan.
The kids and I were home for three really not so easy weeks. It was too hot to be outside, too boring to be inside, just difficult.
Daycare started again. Kinneret started preschool (gan trom-trom). She learned how to use a stencil and cut with scissors.
Ephraim, who had always been the type to give in, suddenly started standing up for himself, sometimes too much.
His daycare lost his painted lens. More trips to Haifa.
Kinneret's gananot tell me that she's one of the more advanced kids in her group, that she's aware of everything. Her speech has caught up without any therapy.
Ephraim's hair has gotten absurdly long. It will be another year now until we cut it.
And there you have it... two years.