Back to the Star

My last few blog posts have been mostly about the two new little grasshoppers who have entered our life.  I think it is about time I spend a little time writing about the star of the blog – Jackson!  With the addition of a brother and sister, his life has been turned upside down and around.  Factor in the daily happenings in his own little world and it adds up to quite a lot of busyness, for him and for me. 

Adding two kids into our home has made it difficult to focus on Jackson and give him the attention he once had.  I miss it.  I’m very conscious of the fact that siblings of children who have special needs often get overlooked and don’t get all the attention they need.  I don’t want that to happen.  To make it not happen I have to make sure that my attention is equally distributed.  Impossible.  No matter what, Jackson requires more care and attention.  This balancing act is proving to be more challenging than I imagined.  I have found that the attention I give Jackson is more focused and centered.  With my limited time I have to make sure every second counts with him.  There is a part of me that feels guilty though.  I know having siblings will be the best thing for Jackson.  He seems to enjoy having the other two kids around.  He smiles at them as they walk by or when they stop and talk to him so I know he likes them.  But part of me worries what he might be feeling.  I wonder if he feels like I have abandoned him a little.  If he misses the attention, if he is jealous, if he is mad at me.  It makes me sad to think about that and I hope he understands.  A mother with guilt is what I am.  So basically I am a regular mother.

Jackson has had a few seizures recently.  The seizures he is having now are different than the ones from before.  For starters, they last a long time.  One was approximately 7 minutes long.  He is exhausted after them and typically pretty cranky.  They are hard on him and take a lot out of him.  It’s difficult to watch.  We’ve increased his medication again so hopefully that will help.  Every time he has one I find myself going down a deep hole.  I hate the seizures so much.  Watching him have one sucks me dry.  Afterwards I can’t focus, I often cry, I go down that “Why Jackson?” road, and I want to scream and throw things.  We’ve been so lucky the last year or so having him seizure free.  He’s made so much progress and is finally a happy little boy who interacts with us.  I live in fear that the seizures will return and we will lose Jackson again.  That all this progress he has made will be lost in the flurry of electrical activity of his brain.  It’s not a good feeling to live like that.

Being a parent of a child with special needs is a wonderful, emotional journey.  It has taken me a long time to focus on the good things and not the bad.  The other day a song came on the radio that reminded me of the journey.  2 years ago I put up a post called Hello World, based on the Lady Antebellum song.  It was during a difficult time that I wrote that post.  When I heard it the other day I started reflecting on how far I’ve come as a Mom.  How I’ve come to accept Jackson for all he is.  How he’s motivated me to be a better person and help others.  Then he started having seizures again and it threw me back to those difficult times.  I could feel myself turning down that dark road.  It takes a lot of energy to try and pull myself out of the car and not drive down that road.  But I have to.  I know that there are always going to be challenges in my life with Jackson.  There are challenges with every child.  How I handle and respond to those challenges is what shapes me.  I can go down the dark road or I can stay on the road we are on.  I want to stay on the road we are on, I just wish there were a few more palm trees on it.

And speaking of palm trees….we are home from our 2 week vacation in Florida.  Jackson loves Florida.  He loves the pool, he loves the beach, and most of all he loves his family.  His teenage cousins dote all over him.  They only get to see him once a year so they focus their time and attention on him and Jackson loves it.  Not to mention the aunts and uncles coming and going and the Grandma and Grandpa who think he is the best thing in the world.  He is not without love in Florida that is for sure.  Despite the bouts of diarrhea (and the dreaded BRAT diet) he had in Florida, he managed to have a great time and was happy as can be.  That kid doesn’t let a little poop stop him from having fun. 

This time I leave you with a quote that seems fitting to remind all of us to stay on the right road.  “We either make ourselves miserable, or we make ourselves strong.  The amount of work is the same.” ~ Carlos Castaneda