The Diagnosis – Part 2

The Diagnosis 2_0 "The Diagnosis 2_0"

There were three additional common traits of Trisomy 9. Three, which at this point we did not know if Ben carried. They were moderate to severe mental retardation, cardiac abnormalities and abnormalities of the renal system. The doctor suggested that our next step would be to undergo testing to find out if there would be any problems in these three areas. He recommended that we have an echocardiogram, a renal ultrasound and a complete developmental assessment done as soon as possible. As we were leaving, we asked if he could provide any case studies that might help to better educate us about Ben’s condition.

It wasn’t until I actually sat down and read these case studies, that I realized exactly what we were dealing with. I know that the doctor explained things that day, but my state of mind just did not allow me to absorb everything he was saying. I vividly remember reading the case studies and coming to the realization that we were not only dealing with a possible intellectual disability; we were looking at complications that could result in Ben’s death. The statistics were not in his favor. It appeared that the major organ defects that the doctor had spoken of were commonplace with these children, and the outcome was most-often a life span of less than ten years.

I can’t even begin to describe the “place” I was in at this time in my life. My only child had multiple challenges as a result of a genetic abnormality that I had passed to him. There was a real possibility that he could have life threatening medical problems sometime in the near future. I’m embarrassed to say that I spent as much time feeling sorry for myself about the “hand I had been dealt”, as I did worrying about my baby Ben. However, I should not be too hard on that person I was twenty years ago. I think all young parents have this “fairytale” idea of how life will look once you get married and have children

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. That “fairytale” vision doesn’t exactly fit life with a special needs child. It took me some time to realize that though life was different, it didn’t exactly mean it had to be less fulfilling. In fact, I can honestly say today that I can’t imagine how my life could have been more fulfilling without Ben constantly reminding me of the basic joys in life, that many tend to forget as they become older and more jaded.

My feelings at this point : As I mentioned above, my state of mind at this point was pretty self involved. However, I don’t want to be too hard on myself because ultimately I did what I needed to do for my son every step of the way. Faced with the challenges of a special needs child, one is forced to grow up quickly. Those feelings of self pity are normal and probably have some purpose in helping one prepare for the future. The important thing is, if after a few months you can’t pull yourself out of the out of the mire of self pity, get some professional help. I had completely forgotten, but Dennis and I met with a counselor not long after Ben’s diagnosis. It was very helpful because I have a tendency to internalize things and was feeling quite guilty about being the one who had caused our predicament. I honestly thought Dennis had every right to blame me for what we were going through. This forum gave us the opportunity to talk about it. Dennis was able to convince me that he did not blame me, and it went a long way toward healing me. …But there was still a long road to hoe.

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