Grandma Janet: April 18, 1913 - January 6, 2012

My mother Janet Eleanor Howard died January 6, 2012. Tomorrow is her 99th birthday. 

She was born in Chicago, Illinois, to Jennie and J. Fred Peterson. She and my father Fred S. Howard lived in Garrett Park, Maryland, a suburb of Washington, D. C., for 59 years until 2007, when they moved to Ann Arbor to be close to me and my family. My father Fred is now 101 years old and lives in an assisted living facility in Ann Arbor.

My mother worked as an elementary school librarian from 1957 to 1977 for the Montgomery County Public Schools. From the time Danny was born in 1976, she was a constant source of moral support. When my husband was out of town for meetings, my parents came to the rescue and helped me take care of Danny, and later Ian and Jennie. 

Anyone who has had a severely disabled child (or two) knows this is not the usual fun-filled romp that other grandparents experience with their more typical grandchildren. My parents made the difference between the maintenance of order and sanity in our household and a downward spiral into chaos and despair. Maybe I'm being melodramatic about this, but I think anyone who has lived in that world of worry, sleep deprivation, and never knowing whether tomorrow would bring another trip to the emergency room, can appreciate the relief of knowing you do not have to face it alone.

My mother was a world-class worrier, a trait that she passed on to me. I like to believe that we worriers are the early warning system for the human race, anticipating all that could go wrong and averting most disasters merely by having thought of them in advance. The disasters that did befall us were not nearly as bad as the ones we anticipated. Knowing that "it could have been worse" is a constant source of comfort to people like us.

In celebration of my mother's birthday, here is one of her favorite poems:

Loveliest of trees, the cherry now
by A.E. Housman from A Shropshire Lad, 1896

LOVELIEST of trees, the cherry now
Is hung with bloom along the bough,
And stands about the woodland ride
Wearing white for Eastertide.

Now, of my threescore years and ten,      
Twenty will not come again,
And take from seventy springs a score,
It only leaves me fifty more.

And since to look at things in bloom
Fifty springs are little room,       
About the woodlands I will go
To see the cherry hung with snow.

How to survive to twenty-five: Ian B. has finally arrived.

Happy Birthday, Ian!

Ian was born a few weeks early by an emergency C-section at Stanford Hospital in 1985. He was found to have an alpha strep infection that he contracted in utero, a very unusual occurrence. A medical student made a little project out of this and found only 30 mentions in the medical literature of this happening.

Ian started his life deathly ill with a six-week stay in the neonatal intensive care unit at Stanford. After the strep infection subsided, he was left with severe brain damage. A CT-scan showed a large cyst at the back of his brain that should have left him blind. As it turned out, he does see, although his vision is not normal, but it is useful to him and for this we can be grateful.

Ian has severe cerebral palsy, severe mental retardation, and is unable to communicate in any specific way. He is, however, a charming young man with many fans. One teacher at his school told me once that Ian is the nicest person she has ever met. The effect he has on people is pretty amazing considering that he has no specific way of telling them what he thinks of them or any way of doing things for them except to cheer them up.

From the very beginning, Ian had high expectations that the world is a happy and kind place. When it disappointed him, everyone in his sphere of influence seemed to know that it was his or her job to fix things for him, to restore his faith in the world as it should be. Life for Ian has not always been easy, but he retains an innate cheerfulness when things are going well.

About the only thing that Ian can actively do is move his left hand so that he can bang on a toy piano. The piano in this picture was a piano/xylophone that had an octave and a half worth of keys. For Ian's twenty-first birthday, John took it apart to give it a really good cleaning and discovered that our daughter, at a very young age, had stuffed gummy bears and other debris into the innards of the piano. Sadly, the piano disintegrated about a year later and was replaced with another that is perfectly adequate, but just not the same. But Ian keeps plunking along.

Danny B. is thirty-three. Heavens, what does that make me?

Danny was born on the morning of October 2nd, 1976. He was small, but vigorous, the doctor said. As you can see, he looked a little worried in his first picture. As it turned out, he had a right to be worried.

A precipitous drop in his blood sugar was followed by seizures and brain damage (severe, as it turned out). Danny was transferred to Stanford Hospital from our smaller hospital in Redwood City, California, where he spent the next two weeks. One of the kinder neurologists at the hospital told us that it might take him longer to learn to walk and talk than it takes other children. We are still waiting.

During that first year we made regular visits to the Stanford Neurology Clinic on Brain Damage day, as I began calling it. In those days Danny was having almost continuous small seizures which made him cranky. Unless he was eating or sleeping, he screamed. We were ushered into a small holding room, always painted a pale green, to wait for several hours before we were seen by the "pretend" doctor, an intern or a resident. Then, with our screaming child, we would wait for another hour for the "real" doctor to appear. He would ratchet up Danny's seizure medications and tell us to come back in a few weeks.

Finally, at one visit, we waited over three hours with our shreiking infant before a new intern, the "pretend" doctor, walked in the room and said, "What seems to be the problem today?" I wanted to scream at this fool and tell him to look at the records before he walked in the room and "pretended" to be helping our son. John, my husband, was much cooler and told him calmly that if the "real" doctor was not in there to see us within ten minutes, we were going home. We waited twenty minutes and then walked out.

It felt like parent liberation day to us. When we got home, we received a phone call from the "real" doctor, furious that we had walked out. John asked him why they scheduled patients to wait for three hours before being seen? The "real" doctor said, fuming, that Stanford is a teaching hospital and they can't predict when patients will be seen. John said we lived close enough that they could just call when they were almost ready to see us and then we wouldn't have to wait three hours. Interestingly enough, the neurologist wrote an almost apologetic letter to our pediatrician about the incident. We switched to a private neurologist after that. By this time we knew our limits when it came to putting up with unhelpful people and felt a little more in control of the situation with our poor baby boy.

Danny at ten, still not walking and talking, still screeching but not quite as much as he used to, and still having all kinds of problems secondary to cerebral palsy and the brain damage he suffered at birth, but isn't he cute? And his new school in Ann Arbor, Michigan, was his and our salvation, especially with the birth of our second son with cerebral palsy and our sweet newly adopted daughter.

Danny is now an exuberant young man, still having "Danny Days" now and then. He had his first party on Thursday as a favored alumni at his old school with yogurt pie for everyone. Today, he celebrated with cupcakes at his group home. Tomorrow, his grandparents will come over to have lunch and blueberry pie, one of Danny's favorites. Eating big gooey desserts is one of his greatest pleasures. His happiness is our happiness.

Happy birthday, Danny Boy!