The Year of Questions – Part 1

Posted on August 4, 2011 by elle9132


The year of questions – 1_0 "The year of questions – 1_0"

My employer at the time could not have been more accommodating. Because of Ben’s fragile condition, I was immediately granted eight weeks of maternity leave as opposed to the standard six for mothers who do not undergo a c-section. And I needed every extra minute. My sole purpose in life for those seven weeks after we brought Ben home was to make sure he ate enough to keep him alive. That meant every two hours it was back to the rocker with the dropper of formula. For the first four weeks my life literally consisted of feeding Ben and sleeping when I could. I can remember many times being so tired while trying to feed him in the middle of the night, that I would just sit crying and watching whatever was on TV; very bad old movies or QVC (remember this was 22 years ago; long before satellite TV).

During those first few months going places with Ben was very easy. Because of his low muscle tone we were able to swaddle him just like a papoose

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. He actually fit perfectly between Dennis’ hand the bend in his arm. He used to carry him around like a football. The thought of doing that with my other two boys was unheard of. Their little legs would not have stayed still long enough to get them wrapped up.

Finally after about a month, Ben began to become much more alert and he actually started to enjoy eating. Unfortunately, about the time he was starting to become “fun” it was time for me to go back to work. I was overcome with both exhaustion and guilt. There were so many times during those first few years that I felt like I was on the verge of a total break-down. This definitely was one of them.

We were very fortunate that some friends who lived not far from us, had just decided to hire a nanny to care for their children at the house; and asked us to share the cost. That was such a relief, because typical daycare centers were not inclined to take on “special cases”, and Dennis and I could not begin to afford one of the specialty daycare centers. Since our friends lived in the same area, Ben was close to all of our doctors and therapists, so it was relatively easy to get him to and from his appointments.

Now it was time to start looking for more answers. The results from the MRI told part of the story, but we were very anxious to not only find out why this happened, but more importantly; what was Ben’s prognosis.

Dennis carrying Ben like a football.


Posted in Cerebral Palsy, Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9 | Tagged , , , , | Leave a comment

The Week At the Hospital – Part 2

Posted on July 31, 2011 by elle9132


first week2_0 "first week2_0"

Finally the day came.  We were actually going to bring our boy home.  Though we knew there were many challenges ahead, Dennis and I could not have been more excited.  The brand new rear facing car seat was securely fastened into the middle rear seat just as we had been instructed.  We arrived at the hospital very excited to “get on with it” only to find out that there were what seemed like hundreds of forms to sign and thousands of instructions from the doctor and the nurses on what and what not to do once we were home with the baby.  Someone really needs to write an instruction manual.  Our heads were spinning from all the information; most of which was forgotten five minutes after we left.

The ride home was both difficult and probably comical to anyone who could see what was going on in our car.  I made the mistake of riding home in the front passenger seat, while Ben was rear-facing in the back.  This meant I COULDN’T SEE HIM!  Every couple of minutes I would practically stand up in the front seat and lean over to see if he was still alive.  Each time I did this, I saw the same thing; Ben with that serene look on his face, fast asleep.

Once we reached the house there were many pictures, and the introduction to Ben’s best friend for the next six years; our Brittany Spaniel “Brit”.  All of which Ben slept through as if nothing was happening

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As the excitement died, Dennis and I were left to just sit and stare at our sleeping baby, then look at each other as if to say, “now what do we do?  We knew life would be different, but I don’t think new parents really understand how much until it is suddenly thrust upon them.  At least we didn’t…

My feelings at this point :  It’s amazing how even with the facts staring you in the face, it is still so easy to believe that everything is going to turn out normal.  At this point I still believed that something like this could not be happening to us.  “This is the kind of thing that happens to other people.”  I was in severe denial, which may not have been a bad thing.  My denial delayed the depression which would have been a hindrance to getting done the things I needed to get done for my new son.

Posted in Cerebral Palsy, Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9 | Tagged , , , | 3 Comments

The Week At the Hospital – Part 1

Posted on July 28, 2011 by elle9132


first week1_0 "first week1_0"

As I said, it was the next day before I was able to hold Ben for the first time. However, it would be a few days before he would even look at me. He slept for three entire days! This meant that he was not eating at all

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. He also had very low muscle tone. After a couple of days, the doctors began to suspect something must be wrong beyond the incredible trauma Ben sustained at birth. That’s when the tests began. After a CAT scan of Ben’s brain was inconclusive, it was decided to do an MRI. In the late eighties MRI’s were not as common as they are today and we actually had to take a “field trip” to another facility to have the test done.

Meanwhile, I was pushing my insurance company’s limits for maternity stays at the hospital, so I was forced to leave Ben and go home. Since I wasn’t released to drive, each day I forced my husband to drop me at the hospital on his way to work so I could stand outside the NICU and just stare at my son. I did, however get to attempt to feed him every couple of hours which was a practice in futility. This was particularly frustrating because he was losing weight and the doctor had made it clear that before going home he not only had to gain back the weight he had lost since birth, but had to be feeding well from a bottle (in this case it was a 2-oz dropper), something my other two sons would have devoured in about 2 seconds when they were a few days old. However, At this point I still could not fathom the thought that there might be something permanently wrong with Ben. I truly believed that he was just feeling the effects of that very bad first day.

Then came the results from the MRI; hypogenesis (or absence) of the corpus callosum. “Huh?? What in the world does that mean? It sure doesn’t sound good.” The doctor then proceeded to tell me that the corpus callosum was the membrane that lies between the left and right sides of the brain. It helps the two sides to communicate with one another. Ben’s membrane was almost non-existent, and without it there could be developmental delay. In addition, it at least somewhat explained Ben’s low muscle tone. Then it hit me. It was very possible that Ben was not going to be a normal child. The doctor said he could not give us a prognosis, because of what little they still knew. At this point we needed to concentrate on getting Ben strong enough to come home. I distinctly remember my next thought. “This is not what I signed up for.”

“Please eat so we can take you home”

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The First Day – Part Two

Posted on July 23, 2011 by elle9132


first day2_0 "first day2_0"

Almost as soon as we got to the operating room my doctor’s overflowing air of confidence began to subside. My body temperature was starting to rise for no clear reason and he was worried about a staph infection. I’ll never forget his response when I asked if it was something I should be worried about, he said (paraphrasing – it’s been twenty years) “Yes you should be worried. People die from those infections.” Note to self; don’t ask any more questions. The one good thing about the forceps delivery was it happened very quickly. The bad thing, Ben came out with the umbilical cord wrapped around his neck. He was a grotesque shade of blue and went straight to the crash cart. The few seconds it took for them to revive Ben seemed like hours. When he did cry it was more of a whimper. The doctors rushed Ben off to the NICU and it would be the next day before I would even be able to hold him.

While under observation for my elevated temperature, I was placed in what can best be described as a “waiting area” with another young woman who had just given birth to twins. Her babies had also been rushed off to the NICU and we were left to console each other for what seemed like hours. While we were waiting a very kind nurse brought to me the very first picture ever taken of Ben. He looked so different from he had the last time I had seen him. His color was normal

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. He actually looked like a real baby! In reality, his first few hours were spent barely clinging to life. Once cleared to go to my room, I was wheeled past the NICU and caught a glimpse of my new son. He had tubes hooked up to him and his little chest was moving up and down as if every breath was a challenge. That wasn’t exactly the best picture to hold in my mind until I was able to see him again the next day.

Up next…the week in the hospital.

Ben’s First Picture

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Posted in Cerebral Palsy, Disabilities, Intellectual Disabilities, Special Needs, Trisomy | 4 Comments

The First Day – Part One

Posted on July 17, 2011 by elle9132


first day1_0 "first day1_0"

My book starts on the most obvious of days, September 26, 1989; Ben’s birthday.  What surprised me was how many vivid memories I have of that day almost 22 years ago.  It starts with me going into labor in the middle of the night, of course, about two weeks early.  Everything was so normal up to that point, including the fact that as a first time mom I had no clue what to do or what to expect.  Dennis, my husband, was his normal calm self, to the point of making some coffee before we headed off to the hospital.  The people expecting us at the emergency room were ready to send out a rescue party when it took us so long to get there.  Little did they know, we had plenty of time before anything at all began to happen.

It wasn’t until about noon the next morning that things started to get interesting.  Dennis noticed that the signal on the baby’s heart rate monitor was starting to fade in and out.  That was the first sign of any problems.  My doctor was unavailable at the time so we had to call one of his partners who immediately prepped me for a c-section.  Just as we were getting ready to head to the operating room, my doctor showed up and decided to do a forceps delivery.  That’s when things went from bad to worse………….

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Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy | 4 Comments