Mr. Lonely

Hearts getting broken are just a fact of life.  A broken heart isn’t just for those that have suffered a break-up or the loss of a loved one.  It can come from a simple question that you don’t have the answer to or from a statement made & these two reasons are why Lee & I suffer from broken heart syndrome.  Just a few days ago, Jack asked me why did God give him seizures.  What an upsetting question & how impossible it is to try to explain this to Jack when we don’t even know the answer.  All I could do is say I don’t know.  Jack doesn’t have any reasoning skills, so this one is very difficult to try to explain to a “normal” person let alone a special needs child.

If that wasn’t upsetting enough, I read an exchange between Jack & one of his “friends” he was playing a game with on his iPad.  There are two people that play on this game together & they can chat back & forth.  One of the comments Jack made to this person was, he was Mr. Lonely.  This particular statement has spun around in my mind 100’s of times over the last few days.  It is just so very pitiful.  I think of this song every time I think of Jack saying he is Mr. Lonely (click the line to listen to the song):  

Paul Anka described Jack perfectly in his song Lonely Boy.  Jack is a boy that sits in his bed mainly 23.45 hours a day, sometimes 23.55 hours consumed by the electronics that have become his “friends”.  It is so heartbreaking to watch him day in & day out sit & do the same thing which is nothing.  We have been truly blessed to have the support that we do with my parents, sister, other family, & two wonderful sitters for Jack.  They each are in place to sit with Jack in order for us to work or for us to be able to spend time with Coleman or Ava.  Whenever Lee or myself gets home, the sitters leave & a whole new shift begins for me with the normal “Mama” tasks such as supper, cleanup, bill paying, etc.  But Jack likes to spend A LOT of time with me specifically & these everyday tasks that we all have, are placed on the back burner nearly every night.  I can’t do them in the mornings because that is the most stressful period of my day with Jack.  That’s when he is running around & acting a fool.  He is an extremely needy child, which I understand given his situation.  He wants someone to hang with & that is great!  Last year at this time, I didn’t think we would ever get back to the point of Jack wanting to have human interaction again.  With his neediness of wanting my undivided attention, all other important happenings in our house are neglected.  Time spent with Lee & Ava watching tv, spending an hour just hanging out with Lee talking, not being able to talk to my Mama or Aunt Dot on the phone, & the most important so I won’t smell like a pole cat, is I can’t shower.  Lee rises early every morning to being his day as a farmer, sometimes exiting the house as early as 5am, it’s understandable that he’s ready for bed by 9pm, but that doesn’t register with Jack.  Supper is done around 7 (this time of year), by the time cleanup is done, Jack is paging me.  Lee & Ava are out & I’ve been left without a shower.  I either have to wake Lee up to listen out for Jack, wait til after midnight when he goes to sleep & setup the monitor in my bathroom or go without.  So if you ever see me with oily hair, it’s because I didn’t get to wash it due to Jack!  Leaving him to roam the house alone is OUT of the question, if he’s awake, then someone needs to awake with him.

All of this got me to thinking about all the people in our community that say “if you ever need anything, please let me know”.  Well, this is my PSA to let y’all know we are interested in your help.  When Jack wants me in his room, it’s to let me watch him play his guitar, watch a movie with him, or listen to him sing.  I started thinking how wonderful it would be if we could have volunteers come to the house while we were home of course, to do what I do during those primetime hours a few days a week for an hour or so.  What I have written about Jack is scary so I understand if the volunteer list is low.  His behavior can be erratic & challenging, but as long as you’re giving him 100% attention, he is great!  I’ve never really asked for the help of anyone except my kinfolk & a few friends, so this is not easy for me to.  I do know that Lee & myself have so many kind, caring friends.  This would really be for Jack’s benefit rather than ours as a family.  He doesn’t need to feel lonely, I want him to feel loved & supported.  If you are interested in sitting with Jack during the evening hours, please let me know.  I think this could be a great opportunity for teenagers too & maybe to gain some volunteer hours for a school club.  This may not work at all, but it could be the blessing Jack is looking for.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog