Stability Brings a Monster Out of Hiding

1994 was a continuation of what had been set into place. Occupational Therapy, Speech Therapy, Physical therapy for B. S was 4 and we placed him into a Pre School program. Having S in school from 9 to 2 gave me the time I needed to focus on B’s therapy without feeling like I was taking something important from S.

In February of 1994 my neurologist decided that maybe prednisone wasn’t as good of a treatment as he’d hoped it bed. It had caused severe acne, significant weight gain and moodiness. So, he started to taper my 100 mgs a day down. We tried going down 5 mgs every 4 days, but I wound up with disabling headaches. While most people get headaches going ON prednisone, a small portion of the population, usually those with existing migraine disease, will respond with the headache on the decline. So, the only option was to slowly taper. Instead of going down several mgs then waiting a few days going down several more, he had me go down 1 MG per day. If a headache happened, I was to go back to the previous days dose and wait 3 days and start my 1 MG a day taper. It sounds easy. It wasn’t, it meant constant attention to the day of the week, the amount I’d taken the day before and the amount that I’d be on the next day. It also meant 80 days, at bare minimum before I’d be off the prednisone. A full 20 days longer than if I’d have been able to go down 1 mg at a time. With headaches complicating, it actually took me 3 months to fully withdraw from Prednisone.

In April, I started my spring routine of walking. Also noting that the prednisone lower dose did not quite cause the hunger that the higher dose did and I started to remove foods from my diet. First to go, was always ice cream. Then I’d remove any dessert or sweet food. By the end of April, I was walking a mile a day (twice as far as my neurologist had ok’d) and my diet was becoming more and more restrictive.

By Mother’s Day, I only had 3 doses left to go. My husband BBQ’d chicken and made broccoli and baked potatoes. I can remember staring at the baked potato as if it would poison me. The butter and sour cream seemed to be taunting me. I ate the dinner because I had no way of getting out of it. D took the boys for a walk to give me a few minutes to lay down. My ‘laying down’ was a ruse to get into the bathroom without being caught. I went into the bathroom and purged the dinner my husband had taken so much care to make for me.

When I came out of the bathroom, our car was gone. D had evidently taken he boys somewhere. A little while later, they came in with balloons, a card, some candy and a cake. While it should have been a moment than any mother would love, and I was able to hide my panic and, in truth, disgust, and hug the boys and smile and say thank you. The balloons and card made it easier to cover the fear that was rising up in me. My husband opened the candy box and I quickly passed it around. The boys and he each took on and I put the lid on. S noted I’d not taken one. I sat down and stared at the candy. Claiming I was trying to figure out which had no nuts.

Finally when the boys could not take the suspense any more, I picked a candy and then let them have another. This distracted them enough for me to put my piece back in the box. D brought in cake for each of us and once again I had no way of getting out of it. I ate the cake then immediately said I needed to take a bath to relax. I went into the back bathroom and ran the water for a bath, and while it was running (and the door locked) I purged the cake as well.

I climbed into the tub … numb from the stress of realizing that food was once again something that I not only tried to control and avoid, but that it had become terrifying to me. Something to fear. I knew that each morsel that I put into my mouth might provide bits of protein, vitamins, minerals that my body needed, but it provided fat, sugar and all the things that had aided prednisone in putting such massive amounts of weight onto me.

The Friday after Mother’s Day, I went to the grocery store and to pick up some meds. As I was standing in line I saw Dexatrim. I’d not used them in years, but I remember they worked well. I picked up a box, and then saw the pink pills that had caused so much misery but made me feel so good when the misery was over … Correctol. I went home with groceries, my sons inhaler, my other sons allergy medicine and my laxatives and diet pills.

I was going to take them as directed. I did, for the first day. The next day, I took 2 instead of 1. The following day, 3 instead of 1.

The end of May I went into the neuro to follow up on the going off prednisone. He noted two things. I’d lost 20 pounds in just the few weeks since I’d gone off prednisone (he thought that was good) and that I had developed a slight tremor. It wasn’t a true tremor, but shaking as a result of the diet pills. I let him believe that it was a tremor, of coarse. I have often wondered if the tremor that I deal with now is purely genetic or cause of disease process, or did the diet pills start it and my body was never able to stop. The neurologist, years later after learning my full history, says that since the blood pressure meds help, it’s likely purely genetic. But just like I wonder if my sons issues are a result of a mother who damaged her body , the thought of the tremors being self induced will always be there.

As June arrived, the pool opened. Since the MG felt normal in the pool, we went daily. I would take the boys for 3 to 4 hours a day, while I swam until the boys needed a nap. Swimming lap after lap and not playing with the boys as I’d done in previous years. I usually had my teenaged niece with me, so she kept an eye on them. They’d manage to distract me for short time periods, but most of those hours were spent swimming laps.

I’d go home and crash. The MG reacting to the punishment I’d dealt out. I’d fix dinner for the family, then claim fatigue (well, it WAS fatigue, but not my true motive) and lay down until 10 pm or so. At this point, I’d go out and walk a mile. (again, 2 times as far as neuro had approved, and he did not know about the swimming).

Mid July, I went back into see the neurologist. I was darkly tanned (was supposed to avoid the sun with the Imuran I was on) and almost 30 pounds down. He told me that he’d never seen anyone take prednisone weight off as fast as it came on. Gave me some hints to protect myself … potassium, protein, all the things I’d already known, but couldn’t have cared less about.

My days were spent with exercising when I could, taking diet pills, avoiding food if I could possibly, and purging if I could not. I’d promised my neurologist that I’d come up with a method of keeping track of what I was eating. He meant it for health reasons. I took it to the extreme.

I made a chart … and then made copies and daily I recorded every single calorie that went into my mouth. Every fat gram. Every morsel was recorded for me to see (and punish myself with if I went over my ‘goal’). My weight was recorded on the chart 3 times a day, when I got up, at lunch and at bedtime. What it said, was a clear indicator on how good of a person I was or was not.

The chart looked roughly like this

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Time    Food           Amount         Calorie      Fat grams      Cholesterol      Weight Success      (1-10)
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
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___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Total Calorie intake:                 Total Fat Intake :                    Weight: Daily Success (1-10)
__________________________________________________________________________________

It took a whole page, and if my weight went up, the success rate went down. If the food intake was less than I’d planned the success went up. If I managed to go on zero calories, I gave myself a 10, but if I’d gained weight then that was decreased to a 5.



This whole process of recording calories and food intake and how much I weighed and how it made me feel filled my days. If I was not taking B to therapies or working with him. If I was not taking Samuel to the doctor (because they both continued to get ill during this time) then I was focused on how I was going to avoid eating the next meal or eat as little as I could get away with it.

By November, I was allowing myself to eat chicken, bread, tomato (in all it’s forms), lean beef, vegetables of all types, limited fruit, dairy products and eggs. I was purging on almost a daily basis, at least 5 times a week, but usually every day. I had foods I would NOT eat ,and foods that I'd only eat if I could find a way to purge. Food and weight had become my focus. I was determined to get off ALL the weight the prednisone had put on, regardless of the price I had to pay.






In December, I woke up, and went to get out of bed with the intent of going to weigh myself. My legs gave out from under me. D jumped up, called the neurologist and my sister in law, niece and husband got me dressed and taken into his office. I was severely weakened and having trouble breathing. He admitted me to the hospital to start prednisone again. He said it’d just be a couple of days to stabilize me. When they checked me in and weighed me, I was 85 pounds less than I’d been in May when the Prednisone was ended. I was angry. 85 pounds in 6 months … and I still had more to go and they were giving me this drug again that would undo all I’d managed to accomplish.

January 1995 I went into the doctor for a follow up and was 20 pounds heavier than I’d been. All the weight I’d taken off would be put back on before they finally let me off it (and the cycle begin again) in July.

Thanksgiving 1993

The day before Thanksgiving we had a follow up for S with his ENT and one for B at the neurologist. I took B first and the neuro measured his head. He did not like what he’d found. He sent us immediately over for the CT scan and MRI to check on the craniosynostosis. This time, he was so convinced that something would need to be done that he went over the surgery with me.

The removal of his skull, and the bones re shapen. The risks are what normally come with surgery. I also remember something about blindness and mental retardation, but can’t honestly say what they were. I was numb with fear at that point.

We rushed to the hospital to get the films done before I had to take S to the ENT. We got them done and B was allowed to climb up into the helicopter when we were coming out. He was on top of the world. I was sinking in fear. By this time, I’d known that this was a possibility, but so much time had gone on, I’d come to believe this moment would never come.

I dropped B off with his dad and I took S to the ENT. It was a routine follow up and I expected to have the hearing test and be in and out in an hour. After the morning I’d had, I was more than ready to get on with the holiday.

We went in for the hearing test and it was taking longer than normal. The lady performing the test was familiar with me, we tested his hearing every 3 months, but a year after his last set of tubes, they said we could go to every 6 months. This was his first hearing test since that extension. The audiologist called me over and repeated a few of the sounds. S was not hearing a certain level.

Devastated, I wasn’t sure how much more I could take. I knew that of all the things that parents could face, *my* child having a hearing loss was probably low on the severity. I knew sign, I was fluent in it. I could help him and anyone in his life. But nothing logical could get through. My child would suffer … and have more difficulties than what others have. I didn’t know how to fix this.

The doctor came in to discuss the testing. He was sorry but assured us that he could still hear and a 30% loss was not insurmountable. This, I knew, but it all seemed like too much at the time. He looked in S’s ears and I saw him change colors in front of me. He went white. He looked up at me and asked me to wait a minute. He left the room and came back with his partner and a special light. They both looked in his ear.

When they were done, they had an assistant come get S to go play. As they talked to me, I felt like the world had opened up and was going to swallow me. Part of me wished it would.

They were seeing what looked like a cholesteotoma. An insidious brain tumor that spiders its way into the brain. It causes brain damage if not caught in time and sometimes the surgery to get it out causes brain damage. They described to me the process of removing the tumor. It would require going through the skull behind the ear … that was all I heard … that and they were pretty sure that this was what they were seeing. So they wanted to cover the procedure with me. If he did in fact have a cholesteotoma they would do the surgery the next week.

They sent us to the hospital for an MRI and then home to wait the holiday weekend for the results.



I came home from the doctor’s office and was just numb. I called my mom and asked her to babysit and D and I went out for dinner. I explained to him the events of the day. He was as heart broken as I was, and was unable to be any kind of support for me. We were both broken and bruised and feeling helpless.

After dinner we went to the coffee shop that we frequented. A friend, T, was there. I told her what was going on. She reached across the table and held my hand and said “we’ll get through this weekend”

That weekend she called me every day and I met her up at the coffee shop …sometimes by myself, sometimes with the boys, while we waited, together for the results. We talked about the what ifs and we talked about politics. We talked about whatever came up …

Thanksgiving, as usual ended up with S having strep throat and B getting bronchitis. Our T day was spent in the ER with 2 sick boys. I only have a slight memory of that day. I know that strep and bronchitis suddenly seemed mild comparatively. Everything we’d dealt with, to date, seemed mild in comparison.

After the weekend of sitting in the coffee shop with T and just trying to function enough to keep the boys clothed and fed, Monday finally came.

We took S first to see the ENT and the results were in. It wasn’t a cholesteotoma, it was severe scar tissue. This meant that his hearing was permanently effected, but there was no reason to believe that he would experience any more loss. The level that he had would probably not have any real effect on his life. With the scar tissue, if it is on a nerve, he could be sensitive to loud sounds. (he was and is)

Greatly relieved but not feeling like we were out of the water yet, I took him out to McDonalds for lunch and then took him home. Then went to pick up B. When I got B, I took HIM to lunch at McDonalds before going to the doctor. Both boys had been completely oblivious to the world crashing down around them. I watched him play and had to fight the tears as I wondered if he’d get off as easily as S.

I got to the neurologists office and waiting for us was a neuro surgeon the neurologist had asked to come and consult. The neuro felt the surgery was warranted. The neurosurgeon felt that given his age of almost 2, it was not. If he was even 3 months younger, he’d be as insistent as the neuro. The lack of pressure on the brain made the neurosurgeon inclined to wait 3 more months. The neurologist acquiesced to the neurosurgeon.

I walked out of there with the weight of the world off my shoulders. Feeling like we dodged a bullet once again, I hugged my son even though he couldn’t stand to be hugged. He tolerated it that time. Maybe he was able to sense that this time, it was for mom and therefore it was tolerable.

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.

Inserting information

I’m finding it rather amazing that I can remember so much detail doing it in this short burst manner. Putting our history down in chronological order revives many memories. Yet, there is much that I’d left out. Forgotten until writing more, or going back and reading.

One of the more important details I’ve left off was S’s ears.

I wrote about his infections but I didn’t write about the fall out. Shortly after his first birthday we saw the ENT for the first time. He said that the problem was severe enough for tubes. Tubes was far more common then than now, but I think even now, with today’s guidelines, he’d still have gotten the tubes.

He was scheduled for surgery shortly after the new year. January 1991 was the first time I had to arrive at 6 am with a baby who had not been allowed to eat since midnight. How do you explain to your 1 year old that they cannot have anything to eat or drink when they wake up at 3 am, or when you get them up at 5 AM. How do you tell him as you change his diaper and dress him …that not only can he not have breakfast, but he can’t even have a sip of water?

How do you look into your child’s eyes and see the pain, the confusion and think of yourself as a good mother? How do you carry through? The instinct to give him the milk and cheerio’s and call the hospital and cancel was great. But, I didn’t. Memories of holidays in the ER, middle of the night screams from pain in his ears drove me past the pain of betrayal I saw in his eyes.

I dressed him in comfy clothes. I bundled him up and D and I, in the freezing cold, drove our son to where they would give him medication that would make him, not only sleep, but could make him feel sick. To allow them to take a scalpel to his precious ear drums and place a foreign body in those ears … in hopes of saving future problems.

They called us back and he was quite angry by then. The nurses were kind, caring and gentle. They gave him the pre surgery cocktail. His little head started to bobble and my heart started to break. There is something so very wrong about intentionally causing pain, discomfort for your child, even when you intellectually know it’s for the good.

D and I went out to the waiting room after they took him from us. We talked, we paced, we stared blankly at the TV in the waiting room. There was another, more private room near by. The receptionist, seeing me stare so blankly came up to us and tell us that we were more than welcome to use that room. There were many other families there, but we were the only ones with a baby. We felt alone, isolated and scared.

After what seemed like forever, but was in all likelihood, a short time, Dr. C came out to get us. He told us that S had done just fine. The tubes were well placed. We were given a script for antibiotics to prevent another infection and told to give him ibuprofen and Tylenol for discomfort.

We were taken back to the recovery room to sit with him till he could go. The anesthesia made him terribly sick. He was throwing up and was so angry. He wanted nothing to do with me. The recovery room nurses called over to the inpatient surgery to let my sister in law know he was out. She came over and S went to her instead of to D or me. My heart broke. I did not feel betrayed by him, but I felt that my betrayal of him had damaged him some how.

After he started to wake up, was less ill, he crawled from P’s arms into mine, where he stayed (except in the car seat) for the next 12 hours.

He woke up the next morning and I carried him into the living room. He stood up and fell down. He crawled to the TV, pulled himself up and fell down immediately. It seemed he had no control over his little legs. He let out a blood curdling scream of anger and frustration.

I called Dr. M who said to bring him in. Normally, post surgical problems need to go to the surgeon, but he was so concerned that his symptoms were too much ‘like mom’s’ (mine). The absolute failure of muscles to support him.

We waited to see the doctor a very short time. He came in, checked his strength, muscle tone, reflexes and sighed a DEEP sigh of relief. He wrote in his chart that the pre medications should probably not be used on him. He either metabolized them too fast or too slow and that is why he’d been so sick, that was why he could not walk. He was still suffering the effects of anesthesia. The doctor handed him back to me, told me to push fluids and to let him know the next day how he was.

The next day, S woke up and climbed out of his crib, came into our room to wake us up. Not something we expected after the day before much less at 14 months old!

We called the doctor to tell him. The relief in his voice was almost tangible.

We thought the battle with the ears would over. It was not to be. A short 7 weeks after surgery he had another infection. This began the familiar routine of infection/antibiotics/infection/antibiotics. The difference was, they were found in the doctor’s office during office hours, not the middle of the night with sky high fevers.

When he turned 2 the ENT said that he wanted him on antibiotics for 2 months, then we’d see where we were. He went off the antibiotics shortly after Christmas. B had just been born. January 2, he got another infection and the ENT set him up for replacement tubes.

The second surgery went smoother than the first. They’d not used the pre op meds, which meant he was more alert, but at 2, his language skills were better and he understood what ‘wait’ meant. He also knew what ‘doctor’ meant. While he wasn’t happy, he did not look at me like I’d betrayed him.

We took him back to the pre op, and because they didn’t give him the medication, they allowed me to walk him back to the operating room. This, is not something I would recommend. Laying my son on the table was worse than the letting someone take him. The reality of the operation, the scalpel hit me harder.

In April, they learned he was having a bad reaction to the materials of the tubes and one of them had turned as a result. They replaced them. While this did not solve his ear infections, it did help A LOT.

Children were supposed to have one set of tubes. He’d had 3. We had no idea that we’d repeat this when he was 10 years old.

Lows and Highest Highs

December 8, 1992, a Friday. We took B to OT and then on into PT. The therapist told me that he was very pleased with B’s progress. When he’d started working with him he couldn’t even roll over yet. And here we were just a few short months later and he’d made incredible progress. He told me that normal walking takes place between 11 and 15 months. B was only about 6 months from walking. Which would only be a 3 month delay. It didn’t sound good to me, till he reiterated how far behind he’d started. OH, OK !


I took him from the OT to a new doctor. A Pediatric Endocrinologist. They’d referred him to this doctor because he was still not growing. He was born at 9 ½ pounds and here he was at a year, he should have been 27 pounds, but he was only 18. Not even double his birth weight!

The doctor examined him, and in pure B style … he threw up all over the doctor.

He asked about the eczema on his cheeks and what we were doing for it. I told him. His jaw gapped open. He said “stop. NOW!” He told me that steroid’s can cause growth issues. I knew that, because of the times we’d had to use it for lung issues. It never occurred to me that it could be the same with a skin cream!

We stopped treating the eczema and within weeks his growth started to happen.

We started to plan his first birthday party. The 15th we’d set aside the time to focus on the plans. We woke up to B screaming. Raging fever .. coughing, you could hear the congestion when he tried to breathe. He wound up in the hospital, with pneumonia, again.

His birthday party got put on hold. But he spent his first birthday in the hospital. This brought painful memories for my husband who had spent many of his childhood birthday’s in the hospital. D had several nightmares that week, and I was worn to a frazzle.

My Dad arrived for a Christmas visit on the 21st. The day we brought B home from the hospital. We talked a lot about B’s progress in PT and his health, my health, D’s health. But we had a good Christmas. Dad had gotten S a cherrio’s game for Christmas and he was thrilled with it.

B got a walker that had been recommended by the PT …one that could pull himself up to a stand and use to push around. Every gift he had was related to his development. I was torn between knowing that to him, they were toys, to me, they were necessity.

Thursday night, late, D & S were sleeping and my Dad and I were watching Yentl on PBS. B was playing on the carpet between us. Suddenly, he turned to me, pulled himself up to a stand, toggled a bit as he turned toward my Dad and took 3 steps! Dad caught it on film.

S had taken his first steps on Father’s Day when we were in California visiting my Dad for my brothers wedding. Now he was here for B’s first steps. For a grandfather who was half a country away, it was quite remarkable.

The next day we had to take B to OT and PT. We walked in, and I had no intention of telling the therapist what had happened the night before. B had repeated walking, so I knew it wasn’t a fluke. I had planned on just letting him surprise the PT during his session. We walked in and headed to the OT gym first. His PT was coming toward us. He took one look at my face and squealed like a 13 year old girl. “You’ve got to be kidding me! He took his first steps didn’t he?”

I’m guessing playing poker wouldn’t be a wise idea for me.

At 9 months, he could not turn over, at 1 year 1 week and 2 days, he was taking his first steps. The first of many miracles.

New Era, Same story

A new regime began. Physical Therapy 2 times a week, Occupational Therapy 2 times a week and Speech 3 times a week. Most of the appointments would come on Monday’s Wednesday’s and Friday’s and we had them back to back. By the time we finished 3 hour long appointments my body was done for the day.


My obsession with loosing weight was increasing. I found many ways to avoid eating (always had) and made sure I took the diuretics and laxatives when I couldn’t get rid of what I’d eaten.

All this time, I’m taking my son to this therapy and that therapy, this specialist and that specialist … and I was running to and from the PCP and the neuro, the ophthalmologist and a GI doctor.

In early October, both boys got pneumonia again. With a lot of work, care and forcing fluids we kept them out of the hospital. But they stayed sick for the majority of the month of October. They’d finish one round of antibiotics and would have to start another.

October 8 my husband was scheduled for an EDG (the camera into the stomach). They took him back and I sat in the waiting room. The children were at my mothers. When it was over, I expected the GI doctor to come out and tell me how things went. Instead a nurse came out and said “I think you should come back here , now”

D was not waking up properly and his heart was racing and not in a good rhythm. They were preparing him to transfer to the ER. We went to the ER where doctors familiar with our family were working. They jumped right onto what was going on, ordering x-ray’s, blood test, blood gasses and cardiac testing. A cardiologist came to talk to me. Don was being admitted for Atrial Fibulation. At this point in time, we had no reason to connect it to the EDG, it was coincidence as far as anyone knew.

They gave him meds and they hoped his heart were convert to normal rhythm. After a few days, it still had not converted. They told us that if it wasn’t normal rhythm by morning, they’d shock his heart. I wasn’t there when the doctor explained the procedure, and D did not give me an explanation. I was too terrified to ask questions. I took a ‘wait and see’ attitude. And Prayed.

I went in at 6 am the next morning, the time they said they’d be taking him for the shocking treatment. I got there a few minutes before the cardiologist and when he came in he had a grin on his face. D’s heart had returned to a normal rhythm at almost exactly 4 AM. He joked that his heart was scared of the procedure and had shocked itself back into rhythm.

He was discharged after 5 days with more medications. It seemed that almost monthly, a new medication was added to someone in the family.

The boys were finally starting to feel better, but still coughy and cranky. This round of antibiotics seemed to be working better.

D’s mom and step dad came up to see him ….after he was discharged from the hospital. His step father had been a very abusive man, and I was extremely protective of my kids when he was around. That day, he kept teasing S to make him cry. It infuriated me. My mother in law kept talking about how cranky they were and couldn’t I do something.

“Well, GEE … they’ve had pneumonia and their father has been in the hospital. S’s 3rd birthday would be the next day and he couldn’t have a party because he was too sick. Now, we’re at his aunts house with 2 older kids and 6 adults in a small trailer. No, I don’t think I can do anything to make them less cranky!”

That’s what I wanted to say. What I *DID* say was “I’m so sorry, they’ve just been sick and they’re scared for their dad. It’s all a bit much to take in.”

D and my sis in laws boyfriend went to the store to get some soda. While he was gone my Father in law pushed (on purpose) S and when S didn’t fall (or cry) he pushed him harder. S’s head slammed into the kitchen table and he let out a scream. My Father in law started to laugh and said “what a wimp”. I lost it, I screamed at him like I’ve never screamed at any one in my adult life …before or since.

My mother in law burst into tears and I asked her what she expected. My Father in law had stormed outside and my Mother in law started to cry and beg me to apologize to him. As this was going on, D and J came back and my MIL met them on the porch telling them what a scene I caused. I was getting the boys things together because as soon as D came back with the car we were leaving! D stood up not only for the boys, but for me as well.

They argued, which infuriated me. He’d just gotten out of the hospital with a new heart condition and all my MIL could do was yell at him that I was controlling, complaining and I’d caused her severe problems with her husband. As D got the boys loaded in the car, I was getting the last of our stuff together. My SIL had gone out to make sure the boys were ok.

My MIL came back in the house, stuck her finger in my face and said “you may have everyone else fooled, but I know how you really are. You WILL NOT come between me and my son. I’ll see to that!”

I left and she followed me back out onto the porch. She was crying and saying that we could work it out. Her personality had done a 180 from what had just transpired.

A week later we got a letter of apology from her that essentially said “I’m sorry, but it’s all your fault”. (meaning, if I’d kept my mouth shut, and took S into another room so N didn’t hear him crying, nothing would have transpired and all would still be peaceful). D wrote her back and said that while she was welcome and as his mother, would always be welcome, N was to never come to our house again, nor be anywhere near the children. We would not be back to visit them until he’d not only apologized, but REPENTED and changed his attitude. Almost 18 years later, that has still not happened.

Halloween came and the boys were feeling almost better. My SIL and I took the boys trick or treating. I started to have trouble breathing and she grabbed the boys ran back to the car, picked me up and took me to the ER then called my husband to come down and my mom to come get the kids.

After several hours in the ER, where the ER doctor was rather rude to me. At one point she said “this can’t be myasthenic crisis, you’re not anxious enough. Every myasthenic I’ve seen in crisis is panicky” Well, I had the tendency to panic, but I’d noticed early in the process how much harder it was to breathe. It was consciously staying calm. Then when my husband said that if it’s not myasthenic crisis, what was going on, she said “Well, she’s just hyperventilating, she’ll be fine.”

We knew then that something was wrong …, hyperventilating …but too calm?

She was waiting on a call from my neuro. When the call came she came back in and said that the doctor had said that I could be admitted for observation over night if I felt safer, or I could go home. It was up to me. Not being someone fond of the hospital, I said I wanted to go home. She said “OK, but first I need you to sign a form”

D asked what the form was and she said that it was a form about leaving against medical advice. Both of us said “no!” in no way shape or form were we going to sign that!

She became very angry with us for not signing and said that she’d do the admission, but the neurologist would probably be very mad.

I was taken up to the room where the nurses were much nicer, they were concerned and kept asking if they’d said anything to me about putting me on oxygen. I said no.

The neurologist came in early the next morning and asked me why my oxygen was off. I said I had no idea, as far as I know , none had been ordered.

He sat down next to me and explained that the Imuran and Mestinon were not doing enough to control so we would be starting Prednisone. Some myasthenics have an initial negative reaction, so I’d be in the hospital for at least a week while they started the Prednisone.

He was also going to order some breathing treatments since my sons had been sick with pneumonia. He didn’t want my body trying to fight off a pneumonia while starting on 100 mgs of prednisone.

I was very confused. I told him what had gone on in the ER and he let me know, in no uncertain terms, that HIS orders had been for admission, start oxygen and she was to let me know to plan on being there a week!

We talked a bit longer and then as he got up to leave it hit me. This is Sunday, the first of November! The Presidential election was on Tuesday! What would I do. He said he was sorry but I’d have to be here.

He walked back in and said “Wait, who are you voting for?” When I told him, he said “Ahh, great, I’ll see what I can do about getting you an absentee ballot. For the record, he was unable to do so, we lost the election and I’ve never let him live it down that he kept me from voting.

This one conversation started one of many, pleasant and interesting political discussions. (ones that would drive his nurse to distraction over the years to come!)

I got out of the hospital the following Monday … only to turn around to take Benjamin to the doctor on Wednesday. He was still fighting the pneumonia …or it was back, we were never quite sure. Either way, this time, the doctor felt he needed admission. He stayed from Wednesday to Sunday.

I was starting to wonder if our world would ever look any different than the road between our house and the hospital, the inside of a doctor’s office or the 4 walls of a hospital room.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

God Shared My Tears

It was a very hot day, I remember very little except that we had to take our child to the hospital for testing. It was July and the festivities of the day had ended in the ER, not with 1 child running a fever, but both. 2 IV’s for 1 and 1 IV for the other, and more Tylenol and Ibuprofen than I ever thought a little body could tolerate. I did not relax till 2 ½ year old S started to tell B that he’d be ok soon and if he wasn’t that he’d tell the doctor knock knock jokes till he did whatever was necessary to get him better enough to go home. The doctor heard that, and his eyes filled with tears, stepped away. I followed him. He said that he’d never seen a kid with that kind of logic so it made him laugh. But the the hope and faith that this top placed in him, was overwhelming. He asked me to let him gather his wits and he’d be in to check out the kids but he was sure that S at least could go home. B may need admission.


By the end of the day, both boys had been sent home and fevers were still there, but, they weren’t too bad. Both kids were willing to play some, listen to being read to and up to watching Bambi. It only took a few days for them to recover and bounce back to the great little boys they were in between their bouts of bronchitis, pneumonia, ear infections, the occasional kidney infection, plus the normal harmless colds, tummy aches and skinned knees.

B had found a formula he could keep down about half the time. He was taking in enough to account for that, yet, he seemed to not be growing. This, started to nag at a doctor or two but as of yet, they were just watching. Watching and waiting is a strange place to be for a problem solver. It became a common place for me. “watch and wait to see if this formula will work better” “watch and see if this virus will lead to a secondary bacterial infection” “watch and see if this third round of antibiotics will kick the infection” watch and see … and now it was watch and see if your baby will grow.

It was July, B was 7 months old. He was born at 9 lbs 8.75 oz. He’d lost weight and had trouble gaining but did gain it. I knew that at 5 months he should be double his birth weight. I wasn’t overly concerned that he wasn’t, because of the weight he’d lost. The family doctor may have told us at that it may play a roll, but technically, by 5 months, he should still be close to doubling his birth weight. Double would have a baby at 19 pounds. But B was 13. Even with having lost a bit, that didn’t account for it. He did not appear to be not getting enough calories, even with as often as he threw up (daily, with most feedings). He was pale and the eczema on his face just kept getting worse and worse which against that paper white skin looked like some kind of skin disease.

We took him to a dermatologist he’d seen before and he increased the steroidal cream, he again biopsied, not thinking he’d find anything that eczema, it seemed B was allergic to life. He reminded me that these steroid creams should be used daily, 2 times a day but in as thin of a coat as possible. It was still a steroid.

After we left the dermatologists office we went back to the Pink Palace for more tests. They gave him a ‘day admission’ (so they could feed him and us if necessary). They took him from me, apologizing that parents weren’t allowed in the sedation room or the MRI or CT scan rooms. They took my giggly little boy who thought the monkey on the technicians scrubs were silly. (they were fuzzy!) they took my vivacious sweet child and in a few minutes would give him medications that would put him to sleep and then place him into machines that scare adults. They’d give him IV’s for some medications for those tests. Then they’d transfer him down to nuclear medicine, still sedated but full of radiation, to do more tests. He would be scanned from head to toe and left pinky finger to right pinky finger. There would not be an inch of his body that would examined inside and out.

One of the reasons, I was told that the neurologist had ordered the CT scan was because his head had an unusual shape, large, yes but an odd shape that seemed to become more odd as time had gone by. They were going to find out if it was just a quirk, or if there was something to it.

After 4 hours of testing, poking prodding, they brought me back a fussy, half awake, throwing up child. They’d offered me lunch. I turned it down. There was no way that I could eat while I had no idea what my son was going through. My stomach in knots … and my heart on the verge of shattering … eating was not the priority.

The next day we had nothing on our agenda, a day at home. I got up, fixed the kids something to eat and looked at my self. Since the start of the medications, the lack of exercise my body was getting out of control. I skipped breakfast. Shortly before lunch, we went shopping as a family. We got some clothes for the boys, it seemed mute point to get anything for B who could still wear what he’d worn a couple of months ago, but there were some adorable matching outfits. We got them. Don went to the baby toys to entertain them while I ran to the pharmacy to pick up the prescriptions that were in and while I was there, I added 3 things to our order : diet pills, diuretics and Correctol. Diet pills, laxatives and diuretics. I could take them before I got sick, as long as I balanced them around my Mestinon I should be ok. The Diet Pills should only help in the energy level. We got home, I took my first diet pills and then went to make the boys lunch. I did not want any. D did not notice.

Dinner came and He insisted that I eat. My anger of being forced into eating was tempered only by the fact that I’d bought diuretics and laxatives. I ran into the bathroom to take them, and went and sat and ate dinner with my family. Shortly after, B threw up. We cleaned it up, and I used that as an excuse to ‘be sick’ and ran to the bathroom to rid myself of the food that had been so unwanted. The guilt over using my sons health as a way to do what I had wanted to do, I sat in the bathroom on the floor back to the wall until I could face my family again.

As I sat there I could hear the phone ring. D called me to the phone, it was Dr. Neuro. While he’d not seen the films in person, the radiologist had called and suggested we immediately deal with them. We had an appt to see him at 8 am before his first patient for the day.

I put my son to bed that night and held him for as long as I could. I had no idea what the world was going to be tomorrow. I knew it would change. I knew it wasn’t good. I knew there was more stress to come and this baby deserved none of it.

We got up, got the family ready to go. We’d sent S to spend the night at my mom’s so that we could focus 100% on B. We arrived and then we were taken immediately back. They’d not even taken time to stop and weigh/measure B. This, was an action that did nothing to decrease my anxiety.

We got into the room and before the nurse could shut it on the way out, Dr. Neuro and Dr. Development were on their way in, inviting the nurse to sit next to me. Dr. Neuro explained that he’d been concerned for a few week about the shape of B’s skull. To be on the safe side, he decided to to a CT and MRI. They let him now the night before that what he was looking for, was in fact there. He’d not seen the films yet, he wanted to get us in as soon as possible so we could form a plan.

He slapped the films up and as the light came on behind them, Dr. Neuro’s face blanched white and Dr. Developmental gasped. For the record, not seeing films before seeing patients is unfair to parents when something dramatic is found.

The cranial issue was obvious. It was a condition called Bicoronal craniosynostosis which is where both coronal sutures are pre maturely closing. It was responsible for some of the oddities in B’s appearance. His broad, almost non existent nose, his forehead being flat … a lot. The Dr’s expected to find that. The MRI had been ordered to make sure that there was no pressure on the brain from the Craniosynostosis. What the doctors did not expect was a brain that had not formed correctly. These malformations were so prominent, that me, who had never seen an x-ray of a child’s brain could see something was seriously wrong at the top and the bottom.

His frontal lobes had not developed fully. The Dr.Neuro explained it was called “Bi frontal lobe atrophy” and that in this case it did not mean a lessening of tissue, but rather a lack of tissue. It had never formed. The malformation at the back of the brain was one that was fairly severe but would hopefully not cause problems till adulthood. Arnold Chairi Malformation Type 1. The severity of ACM types is based on how many MM the brain is protruding into the cavity that is meant to be just that, a cavity. Had his been 1 MM longer, it would have been an ACM II.

He said that with the combination of the known delays that come with craniosynostosis, the already exhibited delays that B had shown, rather than waiting a year, as is often done, to start therapy we’d be put on an aggressive therapy regimen.

That day we were shoved into the world of Occupational Therapy, Speech Therapy and Physical Therapy. Given what they’d found the day before, they’d already set the appointments up. The doctor’s marched us first to the speech therapist. Explaining to the therapist the doctor explained that he’d been about 6 months old before he started to cry. And that we were having serious trouble getting him to eat food. The fact that ¾ of the food that he got down, came back up again, learning to eat right seemed rather urgent. I never knew that a child would need to see a speech therapist to learn to eat. I thought everyone just did that.

After speech therapy, Dr. Neuro was back and took us to the Physical and Occupational therapists. He introduced us, gave them a run down on his history as well as his diagnosis. He told them “we don’t know what to expect, give this child no ceilings.”

Dr Neuro hugged both my husband that night. I knew things were serious. He said to stop by the receptionists office on our way out for some paper work and information on what we were facing.

B went through a joint PT and OT eval that took 90 minutes. By the time we left, we were exhausted. We stopped to pick up McDonalds and then S. We went home. While Don fed the boys, I said I needed to take a bath. I did not know how I was going to get out of dinner but my stomach was in such knots, it wasn’t going to be happening tonight.

I ran the tub, and I climbed in, I cried like I’d not cried in a very long time. I cried more than when the boys had gone into the hospital. I cried more than when my son had had surgery. I cried more than I’d cried as a parent.

After about 15 minutes of sobbing as quietly as I could (so D couldn’t hear) I looked up and told God “there is no way that you can get this! No way you can understand how my heart is breaking. I know that you’ve said that you know all things that men face, but God, you’re not a mother! You can’t possibly know what it’s like to watch your child suffer the way I am and will be. “

As I finished my rant I looked over at the wall. A picture S had once found at a garage sale and that he’d placed so lovingly on the bathroom wall (even though I told him it belonged over his bed). It was a picture of Christ, with a crown of thorns on his head and a look of love for those causing him to suffer. It was the first time that I swear I could audibly hear the voice of God … “I watched my son suffer too”.





GOD SHARED MY TEARS

BY PEGGIKAYE EAGLER



When my heart was breaking,

And desperation was taking hold,

You reached down as promised,

Keeping my heart from growing cold.



You didn't lecture me,

Telling me to stand strong.

You didn't say 'fear not,'

Or tell me my faith was wrong.



I told you my heart was hurting.

My son would struggle all his life.

I could not bear the pain,

I begged you to end my strife.



You looked into my crying eyes,

Telling me to look into your heart.

You showed me that you'd hurt too,

I wasn't alone from the start!



A mother's heart can take so much

A breaking point it will reach.

Father, you understand that point,

And give comfort you don't preach!




The pain I felt, you understood,

Your only son you watched die.

My pain for my child not unique,

You share my tears,

And together we cry.

© Peggikaye Eagler