Angel Raistlin's Story

September 6, 1997-May 3, 2001

Raistlin was born in September 1997.  He appeared healthy at birth, but an MRI soon showed that he had hydranencephaly—he only had a brain stem and cerebellum.  His mother was young and unable to care for him, so he was placed at a residential facility for children with disabilities.  His family did not visit him regularly, in part because they had been told that he was a vegetable and he would not live long. 

I met him when he was only a few weeks old.  I was an Activities Assistant at the facility.  He was such a beautiful little boy—it didn’t look like he had anything “wrong” with him.  But, after a few months, his head began to grow.  And grow.  And grow.  He received a shunt that failed.  I am not entirely clear on the details, but he had to go out-of-state to receive another shunt (apparently it was unavailable or illegal in our state).  That one worked for the rest of his life, but by the time he finally received it, his head was greatly out-of-proportion with the rest of his body.  Not long after, I stopped working at his home, but I kept in regular contact with him when I visited once or twice a month.

When he was two years old, I graduated from college and went back to work at the facility as the early childhood teacher and (residential) case manager.  I began to work much more in-depth with him during the next year.  He was so small because he resisted eating orally.  Finally we decided to start feeding him via his g-tube (which he had since infancy, but was only being used for medication).  He began to grow quickly—and I remember that he gained an entire clothing size in just about two months! 

Raistlin was not as responsive as some of the children in this group.  He had very limited vision (if any at all); I treated him as though he could see, because at times it seemed like he could.  Because of the size of his head, he could not move much at all, although he could kick his legs sometimes, and could move his arms.  He even learned how to turn his head and roll off his side onto his back.  He was easily startled and did not like to be touched without warning.  I would identify him as sensory defensive, something I worked on with him for the rest of his life.  He slept a lot and tended to cry when awake.  I can only imagine the discomforts he experienced on a regular basis.  He hated being wet.  He hated being moved around.  He hated, hated, hated his wheelchair.  A lot of the CNA staff disliked working with him because he cried so much.  But he had a few caregivers who adored him—they are the ones that worked with him on a regular basis.

I made it my personal goal to figure out what he LIKED, rather than just what he didn’t like.  He was only a toddler, and nobody knew what made him happy!  This struck me as very wrong.  Slowly, after months of getting to know him, I found some things he did like: gentle voices, gentle back rubs, soft music, laying down, and (sometimes) being held.  Perhaps the most amusing thing I discovered was his favorite thing in the whole world:  There are little maracas that are for toddlers, they’re plastic, with three balls in the top, that you can watch spin around and hit each other.  Anyway, I used this maraca to rub his head, back and arms—and he loved it.  He would vocalize, kick his legs, and smile (occasionally).  Some of his regular caregivers began doing this on a daily basis and he seemed a little happier.

In the fall of 2000, just before his third birthday, his mother was moving out-of-state.  In order to ensure that he had a nearby parent, she agreed to give up guardianship to my husband and myself.  I was no longer working at the home, and I was happy to have the chance to continue spending time with him.  In December, we became his legal guardians.  That meant that we were the ones called if there was a problem.  We bought him his clothes and toys.  We could even take him out on little trips.

In the spring of 2001, we bought an expensive car seat that reclined in several positions.  We were trained on how to use a feeding pump and how to administer medications.  And, one Friday evening, we brought him to our house for an overnight stay (boy, did he love that car seat!). 

The visit was a mess!  The feeding pump was broken, and we had to drip-feed him (he was on continuous feeds).  He cried and cried for several hours, and had trouble falling asleep.  We had taken couch cushions and created a floor mattress for him, with pillows on either side, and he rolled off and bumped his head on the floor.  Finally, at about 2 in the morning, I was in tears.  I was so tired, and Raistlin was so tired, and he wouldn’t go to sleep.  I sat down on the couch, and had my husband carry him over to me.  I held him in my arms, with his head resting on the arm of the couch.  He was facing me, and I held him and whispered to him until he calmed down.  After just a few minutes, he went to sleep.  So did I.  We slept there for about three hours.  That was the most wonderful experience I ever had with him. 

Just over a month later, we received a phone call from the facility at about midnight.  The nurse told me that he had stopped breathing and they couldn’t make him start, and he had died. (Actually, he had a DNR that had been put in place years earlier, but the staff didn’t follow it.  I had struggled with the DNR issue, and wanted to remove it anyway, so I am glad that they tried to revive him.).  I had to call his mother and explain it to her.  Then, we went to the emergency room to be with him.  My parents joined us there, and we stayed for about two hours.  My mother is a minister, so she contacted a funeral director she knew well, and they took care of all the immediate plans.  The next day we took care of everything else.  The funeral was in my mother’s church the following week.  There were actually quite a few people there, mostly my friends and some church people.  His mother and her fiancé came as well.  Most of the people there had never even met him, yet they came to pay respects to him because they knew how important he was to us.