Then Steve handed me this. I pulled the picture to my chest and and my eyes filled with tears. I looked at Steve and he gave me a wry smile. He said, I knew that was going to get to you. It brought back so many memories of those early years that it hurt.
This is Thanksgiving 1995 (I can see the date on the picture) at my in laws house in Pleasanton. There were often two dining room tables set up on holidays to accommodate everyone. Maggie was 19 months old. Her face is puffy from all the drugs. Her glasses are on top of her head holding some of her curls back and her head band in wrapped around my hand that is holding her. That was typical. She never left her glasses on her face and the headband never stayed on her giant head.
Her head was so big because of the hydrocephalus. It took years before the proportions of her body looked more normal. If you notice, she has a lot of hair on the back of her head and not much in the front because she was growing it back after one of her many brain surgeries to deal with the shunt/hydrocephalus problems. That was a very hard time for all of us.
The sweetest thing about this picture, and the memories that came flooding back are based on the dress she is wearing. It was a gift from a lovely Japanese family we only met a few times. They had a daughter named Ayaka who was in the infant program with Maggie. We went to a group class every Friday and to individual therapy sessions a couple of times a week.Though the sessions were individual, the group members overlapped all the time. We often saw other members of the group three times a week. After a while, Ayaka didn't attend very often because of whatever medical problem she had. Ayaka passed away when she was very young, probably a little over a year old.
Maggie and I went to the service for Ayaka. I remember very clearly feeling like I was intruding as we entered the funeral home. The service was in Japanese and I didn't know what they were saying, but I knew what it was like to have a sick baby and I felt for this family.
I approached them afterward and had to reintroduce myself and Maggie. They didn't recognize Maggie because babies change so much in those months. Though she spoke English, Ayaka's mom didn't really understand me at first. When it clicked she said OOOOHHH, Maggie! The mom took Maggie's face in her hands with the purest expression of love and gratitude I have ever seen. It makes me cry to think of it. I didn't feel like we were intruding anymore.
A week or so later the dad arrived at my door with this beautiful jumper for Maggie as a gift from Ayaka. She never got to wear it because she didn't live long enough to grow into it. I was never more honored by a gift and Maggie wore it many many times. .
Sometimes pictures just transport you back in time. It's as though i can feel the weight of Maggie's big head on m arm as I hold her. I can see my sister in laws face on that Thanksgiving night as I told her this story. Her eyes filled up with tears then just as mine are now.
Sadly, Maggie has lost many friends over the years. I think I realized at Ayaka's service that this was just part of this life we are in. It's not a good part, that's for sure.
I remember Ayaka and everyone of those children and think of them and their families often.