Living Between Two Worlds

This has been an interesting couple of weeks with my family, so I thought I would take a break from school posts and write something more personal that I know so many of my friends with special kids can relate to.

So, as most of you know I have an 18 year old son, Jimmy, with autism and a 17 year old daughter, Gina who is a typical and wonderful teenager.  Gina has been busy applying to colleges which has led me to helping her proof read some essays.  Many of which she has chosen to write about Jimmy, and it has been very enlightening to me.

Trying to raise a child with such demanding needs as Jimmy, has meant that all of us have had to make some sacrifices.  As much as we tried to protect Gina and give her a “normal” childhood, I have come to realize that it was impossible to shield her from the stress of raising a child with special needs.  When Gina was about 4 years old, she asked us, in a very worried voice, if she was going to have to take of Jimmy when we got old and died someday?  Even at that point, she knew what a tremendous burden (I know some of you want to say blessing….) it can be having a kid like Jimmy.  I tried so hard over the years to keep things as normal for her as possible.  She had sleepovers, danced and swam competitively for years.  I am not sure we really denied her anything.  I figured we had done pretty well.

Then, I read her essay to Duquesne University.  She talked about having to grow up so fast at such a young age.  How she had to learn how to take of herself as well as her brother long before she was ready.  She talked about missed opportunities and lost family vacations.  All true.  But I don’t know how we could have done it any differently.  I know so many of my friends will recognize this struggle and realize there is no magic answer.

Yesterday, we went to hear a speaker talk about getting into the college of your choice.  She and her Dad had just spent the weekend at an open house at Duquesne, her first choice.  It as an emotional weekend for her dad who is not ready to see his baby girl move away.  The talk was full of doom and gloom, and Gina left feeling like there was no way she was going to get into any good colleges, let alone Duquesne.  When we got home, she grabbed onto her Dad and cried and cried.  He did his best to reassure her.  But, it was what she told me later that really spurred me to write this post.  She said that Dad was just overly emotional about things, and I really seemed to have no emotion at all most of the time.

That was a crushing blow to hear.  But, I think she is right.  I think when Jimmy was diagnosed, and I realized the dream I had of my life was gone, I had to make a choice.  I could get swallowed up by resentment and grief, or I could play the cards I was dealt the best I could.  So, I soldiered on and didn’t let myself think about what could have been.  I think over the last 16 years, that has led to a dramatic change in my personality.  It has made me put up walls that I just cannot afford to take down.  I can deal with just about anything now.  I am the rock of the family, but I am not sure that is such a good thing.

I wonder how Gina will look back on her childhood and our relationship.  Every parent wishes they could have done something better, so I know that I am not unique in that situation.  I know there are so many of my friends who have similar situations and read this and wonder if their kids feel the same way.  I think every kid is different, and every family is different.  We did the best we could.  I am not sure how we could have done it any differently.

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