Changes

I am certain that the summer of 1962 was a strange, fly by the seat of your pants adventure for my mom and mamaw. I'm sure they were scared they would hurt me somehow but that fear probably went away rather quickly. I was definitely Mamaw's baby! My mom took a 16 month paid leave from her job so I had them both all to myself. However, if I got upset about something, it was Mamaw's shoulder I wanted to cry on. We just had this connection that I can't even try to explain.

They took me to a neurologist for an examination after I was a month or so old. His theory was wait and see. They wanted to see if the myelomengocele changed shape or grew or possibly even something more drastic.

Meanwhile I was followed by Dr. Miller, the sweetest, kindest pediatrician ever. He had actually been present immediately after my birth. He was funny, non-threatening and loved me.

So the months passed and I was a happy, funny, entertaining baby, at least that's what they say. They could have been lying their asses off.

When I was ten-months-old at my next neurologist visit the decision was made to do surgery to remove the sac. And so it was done. Only they only took part of it leaving part of the protrusion (about half) and a hideous scar down the middle. We're talking Grand Canyon here, people! Those who have been in my life for a very long time saw it and I'm sure had nightmares for weeks after that!

I was in the hospital for a couple of weeks. Mom said late at night after things got quiet on the hospital floor some of the nurses would come in for “The Entertainment”. I would laugh and play with them, blow kisses, give kisses. I was probably high on morphine! I read my hospital records from that time and there are several nurses entries like “sweet baby”, “very happy baby”, “very playful and sweet tonight”. So at least it is documented I was sweet at least at one point in my life.

But many nights were hard right after my surgery. My mom and mamaw both stayed with me every night. I would cry out both their names and throw my little hand out of the rails of my hospital bed for them to hold it. I had drips in both hands and one in my head. I'm sure it really took a toll on both of them.

A few days after my surgery my mom noticed that my stomach was getting very distended. I had not passed urine for a while so she asked the doctor on his rounds what was wrong. He said “Nothing this won't fix” as he pushed down hard on my swollen abdomen and urine literally gushed out of me. I screamed and my mom screamed at the doctor and told him to NEVER come into my room again!

Here comes the fun part. They catheterized me and I was continually, constantly catheterized until I was 5 years-old. Every two weeks like clockwork we took a trip to kindly Dr. Avis, a urologist, and he changed my catheter.

That situation worked wonderfully for five years.