Life around here

It has been such a long time since I have been able to sit down and write anything about our lives and what is going on. 

We were able to go on our family cruise in September and it was a wonderful time. Cruises are great as they allow us uninterrupted time to be as a family. We do cherish these moments. Madison is growing up so fast and in 2 short years will be done with High School.  We are blessed that for now she still enjoys being with us, so we are taking full advantage of that😊

 I tend to get a little melancholy during the Holidays.  They sneak up on me and I feel overwhelmed with everything that needs to be done and stress about how to do it all.  Christmas shopping has become increasingly difficult and flat out depressing.  It is so hard to find toys that we know Nathan will enjoy.  He love Star Wars so much and there is only so many items to buy that are interactive for him.  Being blind sucks! I cannot tell you how many times I told Jay “I wish Nathan could see, he would love this.”  We would walk around toy stores and leave with maybe an item or two and unspoken sadness between us. We were able to find his beloved Darth Vader action figure and that made him really happy.  He even slept with it.

Nathan was able to go to Children’s Hospital and participate in the Make-A-Wish shopping trip.  It is such a wonderful event where he gets a personal shopper and makes a list of a few people and gets to “buy” presents for them.  This year he chose to buy for his family and all his nurses. It is always fun to open them and see what he thinks we will enjoy.  And of course, he made a couple of new girlfriends.

Jay and I managed to sneak a few trips to Vegas in this year.  It is a quick weekend that logistically takes planning, but if it all falls into place works!  It is so important for Jay and I to have alone time together. It is a chance to reconnect and laugh a little.  Day to day, we survive. A little getaway is what works for us.

The reality is, this is life.  I find more sadness creeping in.  I try so hard to find joy, but let me tell you it is HARD.  Batten Disease does not take a day off,  it never rests and it always reminds you that it is there.  I want so badly to hold my son but he can’t stand to be touched. I want to hug him, but it has to be on his terms and is usually hard and quick.  I want to have some normalcy but truthfully I forgot what that looks like.  

We were invited to a New Years get together which was the first gathering we have been to in a long while.  Nathan sat on the couch the whole time and didn’t move. Those are moments that I am glad to be a part of but remind me that this is our new normal, and I don’t like it.

Nathan has been home from school for the last two weeks for the Christmas break.  The break in his routine is never pleasant.  I tend to forget how hard it is on him.  He has been waking up very early and screaming for hours.  His nurses have done the best they can to help him. I have worked from home in order to be able to accommodate the hours, but it has been really tough.  I think we will all be very thankful when school starts back up on Monday. 

Everyone always looks forward to a New Year.  I cannot say the same.  When you have a child with a life expectancy, you don’t really want to move forward.  I just want to stay right here, right now.  It may seem crazy but I need time to stop. I am not trying to sound dramatic or gather pity, but feel the need to be honest with where I am at right now.  These feelings come and go, but seem to linger longer than I would like.  I always just wanted a happy, healthy family,  but that is never guaranteed.  But I will say, it could always be worse.  Health wise, Nathan is doing pretty well.  He still has not had any seizures, thank God!  His mobility in the home is still pretty good.  His speech is holding steady, so we are definitely thankful for all of these things.

We wish everyone a very Happy New Year.  May you all find the joy, happiness and blessings in everyday life ♡

Stacey 

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