Monthly Archives: October 2016

The Things You Miss

The Things You Miss

Patricia Leonard-Toomey

Many years ago my husband and I decided that the best thing we could do for our family was to have our daughter Devon remain living at home with us for as long as possible.  When she was 3 years old we were advised that having someone with such significant behavioral concerns remain living with her family would be a difficult thing.  We were basically told that we would never have a “normal life.”  As time progressed we were reminded at least one time per year that a residential option would probably be best for “the family.”  We always declined.  Devon is 30 years old now and still lives at home.  It is never easy, but this was and is our choice and we take it one day at a time.

In my position at CAR, I often hear of families who take vacations with their children, of opportunities available to them because their kids can fly, stay in hotels, stay with relatives while the parents go away, stay with caregivers while the parents go out at night etc.  I am always happy for them, but I know with certainty that there are others like me….people who have never gone on vacation with their families, people who except for one time per year [thank you CAR hayride] who are not out after dark…people whose children must sleep in their own beds every night with the night routine down to a science where nothing can ever change.  Every family has different challenges, but sometimes I think we have to acknowledge that there are many people and families who are restricted from even the opportunity to “relax” or have a day away.

Please note again, that I am not complaining.  It has always been our decision, and I cannot envision a life without the day to day interaction with my daughter, but once in a while the things I miss out on become a little bit overwhelming.  Some of the things you miss are wonderful family events, some are difficult family events.

For example, I was only able to attend 1 ½ hours of the 4 hour wake we had for my Mother.  I had to get home to meet my daughter.  I did not have an opportunity to attend my Father’s wake.  The weather was a factor in this, as well as my daughter’s serious upper respitory infection.  I did make it to the funerals.

I missed my older daughter’s graduation from Medical School and Match Day because she was in Chicago.  I did not have a chance to attend the rehearsal dinner for her wedding even though it was in Providence, because we felt it was more important that I be at the wedding.  It was a beautiful wedding and I was so happy to be there for the entire event.  Devon had a great time too.  My older daughter was not alone for any of these events.  My husband and my father were always there for her, but it was still hard for me.

Over the summer I became a Grandmother to the most beautiful Nora.  She was born in Texas and in August moved to Kentucky with her parents [my daughter and son-in-law.]  Their careers as a Developmental Pediatrician and EP Pediatric Cardiologist have dictated where they live.  Because we cannot travel and they had to move across the country I have never met my Granddaughter.  I can Face Time and Skype and I have many pictures and videos, but it is not the same thing.  I want to hold that beautiful baby in my arms.  I know it will happen someday, it is just hard to wait.   Some days the restrictions I have on my life are harder to accept than on other days.   This major event was just another reminder of some of the things we have missed.   I know I am not alone in this and I believe it is important to acknowledge some of the more difficult and maybe unexpected issues some of us face at certain points in our lives.

 

 

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