Just one of those days

Today was just another Monday.  Nothing out of the ordinary really, but one that got to me.  I had a Doctor appointment scheduled for myself.  It is an appointment that I should go to every year, but haven’t been in 5 years.  When the Doctor came in she had a note in her file about Nathan.  She casually asked me how Nathan was doing?  She said “last we talked he had been diagnosed with Autism and had some issues with his eyes”.  It was a simple question and one that I have been asked numerous times.  Most days, I can rattle off the information with a straight face and just keep going.  Perhaps I was feeling slightly vulnerable  (all you ladies reading this should know what I am talking about:)  However, this time, I wasn’t able to just rattle the diagnosis off.  I wept in her office while wearing a lovely paper gown.  It was pretty pathetic, but I just kept crying.  It was like I went back in time a year and a half ago and it was raw and new.  She was kind and listened and hugged me ( a little awkward-again, the paper gown thing) but I appreciated that.  Sometimes, I just need someone to listen.  I don’t need someone to fix it, they can’t, I don’t need a problem solver, because you can’t solve this problem.  I just needed an ear today and she gave it.  Afterwards, I had to go to work with my swollen eyes and pretend that my eyes are just watery and have been bugging me lately.  I would have loved to have gone home and curled up in bed and just been quiet all day, but that wasn’t in the cards for today.  So I had a little time to feel sorry for myself, catch my breath and go about my day.

A couple of weeks ago, Nathan had an experience at school that has left me pretty upset. His teacher called me near the end of the day and told me I needed to come and pick him up.  I asked her what was going on and she informed me that he was sitting on the floor and crying saying he could not walk and that he had forgotten how to walk.  He was trying to hit the staff (something he has never done before).  I asked her if she thought he really could not walk and she said that he had been playing basketball earlier and she just figured he was tired.  I let her know that I was on my way to pick him up.  Half way there she called back to let me know that security had been called and they were able to get him up on his feet and he was very apologetic.  They got him on the bus and when he got home he just kept saying the same thing that he forgot how to walk and that his legs were not working. I posed the question to the Batten community to see if anyone had any ideas.  I emailed his Pediatrician to see if she had any thoughts.  My first thought was maybe it was the hole in his ear that could be causing his balance problems.  We have been noticing that he is having a harder time getting around the house and seems unsure of where things are and grabs for things more than usual.  He also always wants to be holding on to someone at all times.  His Pediatrician came back and said that she did not believe the ear would be causing the problems I described and feared it was neurological and progression of the disease.  She recommended making an appointment with his Neurologist.  Another Mom from the Batten community suggested a walker.  The kind that has 4 wheels and a chair attached.  If we tighten the wheels and someone guides him, perhaps it would help him feel more balanced and if he was tired, he could sit and rest.  My Dad had this kind of walker so I asked my Mom if we could use it to try it.  She brought it to us and we will work with him around the house to see how he does.  I spoke with his teacher today and she thought it was a good idea.  She said that lately he has been saying he feels like he is going to fall when he is walking.   This just makes me sick to my stomach.  It is one more thing that is being taken from him.  Our house or car is not ready for him to be in a wheelchair, my HEART is not ready to have that happen.

I absolutely cannot put into words the depths that I would go to so that Nathan would not have to suffer anymore.  I would give my life in a split second if it meant saving him.  I am his Mother.  I am supposed to protect him from harm.  How can this be happening to him? What in the world are we supposed to do?  We sat in a Doctors office on June 10, 2015 and were told to go home and enjoy every minute with him.  To take him everywhere and make memories.  That is a very double edged sword.  We are doing everything we can to make memories with him, but it should not come along with a Doctor telling us our son is going to die.  I want my children to bury me, not the other way around.  It is during these moments that I am reminded of the following poem

Footprints in the Sand

Madison said to me the other day that she was sad because she realized that she had never had a normal conversation with Nathan.  She sees her friends with their siblings and gets upset that she does not have that type of relationship with Nathan.  They don’t play the games together that all her friends do.  She has never been on a bike ride with her brother.  There is nothing “normal” about her relationship with Nathan.  But what she does have with him is so incredibly special.  He looks up to her and loves her so much and she looks up to him.  She is so amazed at what is able to do and what he goes through on a daily basis.  She has the most unbelievable heart of any person her age I know.  I am so grateful for her.

This is just one day that had me down.  Tomorrow will be better, it has to be.  I go to bed each night and pray that I can just get through tomorrow, and then do it all over again.

We do wish everyone a very Happy Thanksgiving.  Through all of this, we are very aware that we do have so much to be thankful for.  May you be able to see all the blessings in your life. Below is a song that has really been speaking to me lately.  I hope you enjoy it.

Stacey