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 thatūüėä

 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 ‚ô°

Stacey 

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Officially a Sixth Grader!!

Nathan had his last day of 5th grade today! He ended the year with a party at the park.  Yesterday we had a meeting with the school hearing all about how much Nathan had matured this year.  He is able to be re-directed easier and is willing to work.  That is a huge difference from last year. 

It was such a nice opportunity to hear from all of the people who put so much effort into making school enjoyable for Nathan.  They go out of their way to find fun activities for him to participate in.  They are very creative in how they teach him.  You have to be creative to teach someone who is blind and needs hands on learning.  This has been the best year so far.

And a special thanks to Mrs. Parker for making Nathan feel loved.¬† Even though he wasn’t an active participant in her classroom, she always tried to find a way to include him.¬† If you read or remember¬† my post from a couple of years ago, this is the same teacher who made Nathan an honorary 5th grader when Madison was in her class.¬† She has a special place in our heart. ‚ô°‚ô°

Here is to all the teachers who do so much every day for their students.  A lot of it goes unnoticed, but I promise we see you and appreciate everything you do!!

Have a great summer!
Stacey

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All the little milestones

Today, Nathan participated in his 5th grade field day.¬† I remember doing this as a kid and it was a sign that summer was right around the corner.¬† We had rain almost the entire month of May, so I was happy that today was a beautiful day for him to be outside and have so much fun with his classmates. I can’t believe that in less than a week we will have a 6th grader.

Madison finished school yesterday and will be going into 8th grade.  She finished the year on the Honor Roll and we could not be more proud of her and all her accomplishments.  These are the type of accomplishments that we sometimes take for granted.  She is so smart and able to do so much independently that we need to be more mindful to check in with her to make sure she is okay.

Today was a happy reminder that Nathan is loved by his teachers and his peers.¬† I can’t begin to describe the worry that I have felt over the years wondering if when he is not with me if people were kind to him or paid attention to him.¬† I have wondered if he really had friends at school, I have wondered how a whole year can go by without an invitation to a single birthday party.¬† And every so often Nathan will question it, but mostly, he is happy.¬† This school year was the most pleasant year Nathan has had so far and for that I am a happy Mama!

We go back to Children’s Hospital on June 10th to get the final results of the DNA testing that they did.¬† We should have a definitive answer at that time.¬† The Doctors have requested that just Jay and I attend this meeting.¬† Words do not adequately describe the pit in my stomach.¬† I literally ache over the idea of what we might hear.¬† But I pray daily for help to get through whatever we may face.¬† I ask that you pray for us as well.¬† I will update everyone as soon as we are ready to let everyone know.

As always, thank you for the love and kindness you have shown to our family. It truly means the world to me especially.  The other day we received a post card and it was such a sweet reminder that people have not forgotten about our son.

Stacey

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Service Animal

I am putting some feelers out to see if anyone has a contact to train a service dog?  I have a contact for a Therapy dog, but would like to look at the possibility of having a dog trained as a Service dog for Nathan.  These are two very different types of training and allow the dog into different places. From my research,  this can be very expensive and I am trying all avenues to see what  is available.

Thank you,
Stacey

Some answers

I don’t want to leave everyone  hanging with the results of our tests.  We found out some potentially  heartbreaking  news today.  However, in order to be 100% sure, they want to do one more blood test that will take 8 weeks to get back.  At that time,  we will know for sure what we are dealing with.   I am not comfortable at this time sharing what we found out.  I will ask for your prayers for Nathan and our family.  It was one of the worst case scenarios  for us and we need your prayers now more than ever.

Thank you,
Stacey

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Say a little prayer

Tomorrow, April 8th we have our test results appointment with the genetics department at Children’s¬† Hospital.¬†¬† We will find out if they found anything out on Nathan’s DNA testing they did¬† back in December.¬† They will also determine¬† if there were any “incidental” findings on either me or Jay.¬† If they don’t find anything, we will have to revisit a year or two down the road.¬† We will definitely have to schedule an MRI for this year to compare to the one last March.¬† This is all so scary to us and I just don’t know that our hearts can handle anymore¬† heartbreaking¬† news. So, if you have some time tomorrow,¬† say a prayer for our family.¬† We would really appreciate¬† it.¬†
Thank you,
Stacey

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