Don’t Feel Sorry For Me

So once again, I find myself holding down the fort this week.  This Memorial Day weekend, Jim had a Caterpillar meeting and event that led him to Indianapolis.  He actually got to participate in many of the Indy 500 pre-race festivities and then got to sit in turn 3 on race day.  He grew up watching this race faithfully with his entire family, so it is a dream come true for a guy who really should have been a race car driver.  It is a great tradition that I was indoctrinated into once we got married.

As he is off having the time of his life, I am home with the kids keeping things running here.  But, don’t feel sorry for me.  When you have a child with a disability, family life looks differently.  You have to figure out a way to experience things that most families take for granted in a unique and creative way.  So, if things were different, I am certain that all four of us would have been in Indianapolis this weekend, but that is okay.  I am so happy that Jim gets to experience this and I have absolutely no regrets nor one ounce of resentment.  My time will come.  I know, there will be times I will get to go off and do what I have dreamed of, and Jim will stay home.

Don’t feel bad for me.  I find happiness in his happiness.  I have found many things this weekend that make me happy.  I miss my husband, but I am so grateful he has had this time.  You may not understand it, but it works for us and works well.

Watering the Grass

Well we made it through the week with minimal issues.  Just one night of almost no sleep which is pretty good.  Jim had asked me to water the new grass we had seeded while he was gone.  It would take about an hour and needed to be done either early in the morning or later in the evening.  I chose the evening, and decided to ask Jimmy if he wanted to help.  Shocker, he said ok.  If you know Jimmy, he usually does not enjoy anything that 1) takes him away from his iPad and 2) requires him to be in a vertical position.  Well, we had a great time.  Every night he would help me for most of it.  He seemed to really enjoy himself, and it was good to see him out of the house and especially out of his bed.  We did have a few issues, however.  The first night, I took out a drink with me (a gin and tonic) in a blue cup with a lid and straw.  Silly me, that is normally Jimmy’s cup.  Well, he would not leave me alone, and was really mad I would not give him the cup even after I got him his own drink in a different cup.  Really, my fault.  I should have known better.  So, I just gulped down that drink and did not make that mistake again.  The next day, Jimmy somehow saw, across the dirt, this unhatched robin egg.  I have no idea how he even saw it, or why he would be drawn to it.  But, off he went and before I knew what was happening, he had squeezed it all over himself.  Ewww!!!!  But after a quick wash, we were back at it.

So, in all it was not such a bad week.  I learned that Jimmy really likes to water and play with the hose.  I also re-learned not to use his cup and to keep him as close as possible.  Thanks to everyone who send me warm wishes for success, it worked.

Juggling it All

As I approach this week on my own with my hubby in NC for the week, I feel the anxiety of trying to juggle it all.  I know there are so many parents out there with special needs children who feel the same.  It is especially hard now that we are in a new state (PA), with no support network.  I miss those few trust-worthy people I could call up when I needed some help (Peter, Fred, Greg, Lori, Sarah, Beth, Amanda…).   Last week, I missed my daughter’s induction into Honor Society because my husband was out of town and I just cannot handle Jimmy in crowds by myself anymore.  Now I am all on my own.  Some people tell me to just find some respite workers in the area, but that is just not an easy or welcome venture.  Jimmy is BIG and strong, and it takes someone who really knows him to read his moods and keep him safe.  In order for someone to know him that well, they need to spend time with him.  That takes money on my part and an invasion in my home.

For the last 16 years, we have had people in our home on a very regular basis.  Some people were amazing and some were not.  It was exhausting for all involved to get to a level of comfort that I felt I could leave Jimmy alone with them.  I just don’t have the energy anymore to weed through the people who sit on their phones watching Jimmy play on his ipad while I pay them $X/hour.  Don’t get me wrong, I have had some AMAZING people in the past who have made a huge difference in Jimmy’s life, and I think I would have lost my mind without them.  But, I also went through A LOT of individuals who were scary and questionable at best in my home for hours at a time.

So, now I face this week with some trepidation.  At least I am not juggling a job as well (a post for another time, as that is not a happy statement), so I just need to keep things as smooth as possible.  I will miss another major event for my daughter, her senior presentation which she has prepared and is giving a year early.  We, as parents of special needs children (and adults) miss a lot.  We are isolated in our homes, and despite everyone’s encouraging remarks to “just come on it will be fine” they just have no idea.  They do not understand how disruptive at best, and dangerous, at worst, it can be when we try to just “join in” without the proper support.  I am so lucky to still have a husband who has stuck in there and is an amazing support, he just cannot be here all the time.  So, everyone, wish me luck this week and say “amen” if you know EXACTLY what I am talking about.

PS  This is my second attempt at this post.  I deleted my first try as it seemed too negative.  Imagine how that one sounded!!