1993 a bit of this and a bit of that

1993



In Mid January I woke up to get ready for church and was too tired. Don got the boys ready and mom came by to get them. I’d gone back to bed. Later that morning, I was back up and around. The someone knocked on the door and I answered it. It was my sister. She asked to speak with me. She kept looking at me funny. Almost a “what are you doing in my sister’s house” look. I laughed at her and said she was too funny. This is only the second time in my sister’s life that I can remember seeing tears in her eyes. She took me into the bathroom and said “Look at your face!” My face was covered with acne (it hadn’t been the night before) and was this big round ball. My pajama’s felt odd, so, just looking at my face decided to step on the scale. I’d gained 15 pounds over night.



Later that week I took Samuel to the doctor. I stepped on the scale while there, having gained another 8 pounds since Sunday. The doctor stopped by while I was weighing, and actually did the manipulating of the scale. Samuel had strep throat and we were sent home with antibiotics and an appointment for me to come back the next day. He wanted to talk to me about m y sudden and rather severe reaction to the prednisone.

I went back in the next day and had gained an additional 10 pounds. This was 33 pounds in 5 days. My skin was not stretching well, and I was getting stretch marks everywhere, including my arm pits! The back of my knees. The arch of my foot …

He called my neurologist who said this isn’t a normal reaction, at least not to this degree, but that it wasn’t unheard of and that I needed to continue on the prednisone.

I found myself eating in ways I’d never done before. While I’d been purging since I was a teenager, I’d never binged before. On prednisone, hunger was unchecked and insatiable and binges started. Followed by purging and laxatives. The inability to exercise would often be on my mind as I fell asleep.

My husband noticed I was eating more than he’d ever seen me eat, he noticed the weight gain, but after a few years of watching me find excuse after excuse to not eat, he didn’t care. He was just glad to see me eating.

Benjamin was walking, but still not talking. We continued in physical therapy and occupational therapy. Speech therapy increased to 3 times a week. OT was 2 times a week and PT was once a week.

Frequent infections where a constant reminder that nothing was normal for us. During this time period I was babysitting my niece and off and on my nephew. M was 10 when B was born, and I am not sure how’d I’d have done it without her extra set of hands and her delightful sense of humor. She came over every day after school, on weekends and all day during the summer.

As spring approached I decided to try to start walking again. It wasn’t weight lifting, or running or aerobics classes, but it was something. It took me about 35 minutes to walk a half mile, but I did it. Every evening, without fail. In early April I was finally able to start to wean off the prednisone. I’d gained 105 pounds from Halloween to mid March. It took me about 6 weeks to wean off the prednisone. The lower I got, the less I ate. By the time I was off it, I’d reverted back to my restricting intake. This time, it was taken up with detailed records of every single gram of sugar, protein fat and cholesterol that I consumed. Even a mint went onto my chart. I weighed myself up to 8 times a day and each time recorded it. If my weight was up from previous weight, I’d punish myself. If it was down, the only reward allowed was to write it down.

It was during this period that I started to not let myself read before bed time if I had gone over my goal calories. Reading was always my sanctuary. It was what I did when I was overwhelmed as a child (or being punished in my room …or sent to my room to clean). If I went over too many calories (which was as few as 50 or as many as 250, if we had something ‘special’ going on, I’d ‘allow’ myself to go to 400. Not reading prevented me from relaxing. I’d not been able to fall asleep without reading since I was a young child. It never occurred to me that I not only was punishing myself with the loss of a pleasurable, stress relieving activity, but one that enabled me to sleep well, and thus, was somewhat self destructive.

In early May, I was called and told that my grandfather was extremely ill in Washington. He had a lung infection. He’d checked into the hospital for some cardiac testing. My dad chose to not go see him because Grandpa was “always sick and he can’t go running every time.” On May 8,1993, he passed away from the lung infection.

In early June, my mother was called by her mother’s husband. Grandma had checked into the hospital to rehydrate after a particularly severe episode of celiac episode and while she was there, she contracted a lung infection. My mother took off for Seattle, to be with her. My Aunt beat her there by 24 hours. She greeted mom in the hallway to say that it wasn’t likely that Grandma would make it. Mom walked into Grandma’s room, took Grandma’s hand and said “Mom, I’m here” and with that, Grandma took her last breath. She died from the SAME lung infection … in the SAME hospital as my grandfather had ..and it was June 8,1993.

I went to pick up my mom from the airport and had the wind knocked out of me. Mom had left town perfectly healthy. She came back frail, fragile and sick. They rolled her off the airplane in a wheelchair. I was quite alarmed. She had been as strong as I was before I got sick. This all made no sense!!

Later that month (June) B’s speech therapist told me that she would not be coming back. It was her last time to see us. The following week we met the new therapist. The previous one, upon learning that I knew sign, told me that she did not want me using it with B. That kids who have no hearing loss that learn sign become dependent on it. I called my dad (who used to teach the deaf) and talked to him. He said that it certainly is a school of thought, and there were not, to his knowledge, any definitive studies to show. In his opinion, since we were entrusting the care of our son to her, we needed to follow her recommendations.

By June of 1993, B was not even attempting to say “mamma” or “milk” or any other first word that babies often have. He could not point to what he wanted. He had no communicative skills. Many people don’t find that alarming, but … it is remarkable how early in life babies start to communicate. When an 18 month old isn’t communicating … there is a problem.

He had no way of showing likes or dislikes other than laughter and crying, which seemed more reflexive than communicative. He couldn’t point, he didn’t know how to respond to speech. His delay was quite significant.

His new therapist evaluating him was alarmed at the absolute lack of ability to communicate. She immediately taught him the sign for “more”. She then talked to me about his need to communicate. She told me we’d work on teaching him signs. I told her what the previous therapist thought and she said that while she agrees that it *is* a school of thought, it doesn’t hold water. What child who can say “drink” is going to put down a toy to SIGN drink?

It made sense to me. So, that night I worked with him on “more” “Milk” “mama” and “boy” (for brother)

The next day I added “Daddy” “Grandma” “eat’

The next day I added “cat” “toy” “car”

He picked up on sign like a duck to water. By the time we returned at the end of the week he had 20 signs he could use IN CONTEXT! I felt like we’d crossed a major hurdle… which was accompanying the feeling of absolute failure as a mom. In going against my gut instinct and listening to the professional, I’d not given my child an appropriate mode of communication. I felt like I’d not only failed my child, but I’d robbed him of a few months of development.

We spent several days a week at the pool. S and M (niece) learned very quickly to keep me in the pool by playing with me. It was a very odd phenomenon. I got into the pool and the deeper I went. The stronger my muscles got. IN water, the myasthenia became a non issue. Any muscles not in the water were effected, so I was often in the deep end so that my breathing & shoulder muscles were in the water. I swam laps, taught my niece (and her friends at the pool) water ballet. Played with my sons. Taught M & S how to do tricks in the pool (walk on hands, do flips, backward summersaults, forward rolls etc). I’d play rough and we’d go to get out of the water and as my thigh muscles hit the air, the MG would hit me like a ton of bricks. My exhausted legs would not lift my body out of the water. In order to get out of the pool, I’d have sit on the stairs for up to an hour waiting for another dose of meds to kick in. These days I’d enjoy …but always paid a price. Worn out and tired, my ability to play with the boys at home was severely hampered.

By September, we heard the first very clear word come from his mouth. “NOW!” It was uttered at his brother when he took a toy from him and was teasing him with it. B wanted it back ..and back NOW!

Somewhere around the middle of September, we went in for the every 2 months MRI that we were doing following his craniosynostosis. The end of the month we went back to the neurologist and he told us that he was uncomfortable with the progression. They’d follow it for a couple more months, but that he felt that we were looking at the corrective surgery.

Late October, both boys were sick again and I woke up with pain in my side. I couldn’t stand up straight. My doctor told me to come in. He expected to find gallbladder disease but instead found that I had a rather nasty case of pancreatitis. I was hospitalized for 3 days that I have very little memory of. I know they had me on IV and pain killers. I have vague memory of the boys coming to see me, but not really of anything else. My doctor was concerned that the medications I was taking for the MG (immunosuppressant) might worsen this. When he discharged me a few days later, he was visibly relieved that it’d not gotten any more serious than it had.