Every Day

The other day some one's son died unexpectedly. He would have been seven this year.

It is an incredibly tragic situation. The boy was a special needs child. I think something went wrong in the delivery, and this child paid for it with his life. Like so many special needs children, though, he was not a source of sorrow but one of joy for his family. My heart breaks for them.

It got me remembering my childhood and my little brother. It's funny because since he and his wife adopted the beautiful Evie, I have been full of memories of him as a child and what it is like to be in a family with a special needs child.

It would be safe to say that my brother, T, and I have always had a somewhat fraught relationship. Regardless of the situation, it is always a difficult adjustment for the baby who is being displaced. Add to that my mother had been especially emotionally needy in my early childhood, and, as a result of that and my own personality, I guess, I was considered a clingy child. My mom could literally not go anywhere without me. I sat on her lap as she delivered CCD classes; I sat between her and whomever was in the front seat of the car; and I was always right next to her or two steps behind her from the time I woke up until I went to sleep.

The year of my brother's birth was challenging for all of us, but probably most for my mom and dad. My mother's mother was dying; my older sister needed surgery on her knee; my parents were struggling through some of the hardest time of their marriage; and then my brother was born with Spina Bifida.

It is worth noting that my mom also has a particular aversion to challenging authority; and that she considers doctors as authorities, not trusted professionals.

When T was born, my parents were told that he probably wouldn't live a month. The doctors suggested they just let him die rather than doing life saving or lengthening surgeries.

I am not sure if it is just mother lion or her religious beliefs or a special incredible hulk like strength that entered her, but she respectfully disagreed with those doctors. I don't know the words she used, but I know that she told them that according to what she believed, everything must be done to preserve his life. T was baptized that day in the hospital, just in case those doctors were right, but he got his first surgery at 40 hours old.

This "he'll probably only live to be ..." refrain continued for most of T's life. He won't live the month, the year, to be 5, to be 7, past his teenage years. Every time, my parents (really my mom) insisted on the medical procedures. Every time, T defied expectations.

As it is in most special needs families, the condition is born by everyone. The next year, my mom was unexpectedly pregnant again, my grandmother had taken a turn for the worse, and T needed all kinds of special treatment. There were neurologists, pediatricians, therapists... every treatment, every appointment, every therapy session, there we would go: my mom, me, T and then also my baby sister. My older brother and sister somehow avoided being part of the menagerie that traveled from place to place.

I remember specifically the support group that called my parents the day after T was born ... they nourished us in unexpected ways. For one thing, their children were far more disabled than T, but taught us the way these children are gifted with so many other abilities. We could see in them all that T could be... they renewed all of our hope and faith in that what we were doing was right. They supported my mom's decisions for treatment; they talked her through the different options; they shared the euphoric moments and the challenging times.

I remember T being the funniest kid...but then again, maybe we just appreciated every thing about him a little bit more because it was precious...looming over us all those doctors' predictions.

That is not to say that it wasn't also frustrating, annoying and painful to lose the connection with my mother, to grow up so fast so that I could help, to feel forced into self-sufficiency mode at a time when I just wanted my mom to give me some of her attention. But there was genuine joy when T crawled, when he scooted, and finally when he walked. It was absolutely affirming to see him beat all the predictions.

In high school, a young man with Spina Bifida a few years younger than me, died in his sleep. I was devastated. I didn't know John well, but he was a kind of embodiment of what T could be, could have been, might still be.

I remember for months, I would wake up worried that my little brother would be gone without a word. But here he is. He'll be 37 this year; he's married, gainfully employed, driving (!) [that's another long story], and raising a child of his own.

I will never know if he has any idea what it was like to be his big sister. If he had the same worries and fears as we did. I couldn't imagine living under that cloud; it was bad enough to be in the shadow of it.

But when I read that my friend's son had been taken from their lives, I felt the familiar pang.

I decided rather than worry, I am just going to try to feel joy every day that he is still in our lives.

It is an incredible reminder to enjoy every day to the fullest, to relish your people even when they drive you crazy, and to live every moment.
picture credits... me, mostly a trip to Tomales also some from the old neighborhood in Oakland