A little update

I took Nathan in to the Pediatrician for his well child visit a couple of weeks ago.  She was amazed at how tall he was.  He is a little over 5′ 7″ now and grew 3 inches in the last year.  He loves going to this Doctoe as she always wraps his arm up in a “cast”. He is off the charts in terms of height and weight for his age, which we all knew 😊.

The first month of school has gone amazingly well.  I thought for sure that it would be a difficult transition for him, but he completely suprised me!  He loves his new school and teachers and has started to make some new friends (although can’t ever remember their names 😊).  He is always thrilled when someone from his elementary school stops to say hi!

We have had a couple of rough days.  There is some staffing changes at school which may be playing a part in why this week has been a little more difficult, however, we are really optimistic about all that this new year brings!

Madison started High School and it has gone wonderfully as well.  She is settling into a routine and has really enjoyed it so far.  She has joined a couple of clubs and we can see her starting to really come in to her own.  It makes us so happy to see her so happy.  She deserves it so much!

On a happy note (for me), I am leaving on Sunday to go to Mexico for the week with a girlfriend!  I could not be more excited to go relax on the beach for a bit, but as always, hesitate to leave my family.  Jay does such a great job while I am gone and my Mom is going to come stay and help out too.  We all need little breaks and this one is coming at a great time.

We hope all is well with everyone and appreciate you coming along on this journey with us.

Stacey

First day jitters (all around)

On the eve of Nathan’s first day in a new school, I pray that he encounters children who are kind to him.  All he has ever known his whole life at school is getting ready to change.  You hear the anxiety in his questions that he asks.  He is asking if his old friends will be at his new school.  He is confused about new friends being there.  New teachers, a new classroom, a new layout to the school that he is unfamiliar with.  I would be lying if I said I wasn’t scared.  I hope tomorrow is a wonderful day for him.
Madison starts High School tomorrow which brings another set of fears.  Hers are more vocal, she is able to express her anxiety.  I am so beyond proud of her for facing a huge fear of hers, but knowing she is going to do amazing.

A favorite song of ours is “Humble and Kind”. I hope my kids are always Humble and Kind.  I hope if Madison ever saw someone hurting or alone, she would be a friend.  I hope if someone sees Nathan lonely or afraid that they might be that friend to him. ♡♡

http://momastery.com/blog/2015/08/18/before-school-conversation/

The funny thing about hope

You would think that a family like ours who has been given a diagnosis of a terminal illness with no treatment or cure would cling to any and all ideas of hope.  And trust me when I say we do.  But let’s back up a step.  On June 10, 2015, our world changed forever.  When we were given the diagnosis of Juvenile Batten disease we were told there was no treatment or cure for this disease. We were told what symptoms to expect and how the disease normally progresses. We left with a 6 month follow up appointment to track symptoms and that was pretty much it.

Thirty days later we were on a plane to Chicago to attend the annual Batten Disease conference.  Again, we went in with hope. We spent countless hours listening to doctors, researchers, scientists and other parents searching for answers, looking for  hope.  We found a commonality among everyone who attended.  They all had children who were slowly slipping away from them.  We were all there for the same purpose.  We want to save our children.  I remember sitting in a session with all the researchers anxiously awaiting for them to talk about CLN3 ( the version of Batten disease that Nathan has).  They went through all the research and upcoming trials for different versions of Batten.  Finally in what seemes like the last 10 minutes they talked about CLN3.  I don’t remember all they said, but left feeling like there was not any hope.  I remember leaving the conference so excited about the connections I had made with other families, but still felt there was no hope for Nathan in the future.

Fast forward a year to July, 2016.  We were now attending the conference in St. Louis.  Again, we were in a room with researchers and we waited until the end to hear about CLN3.  This time it turns out there is hope.  There is some promissing research in the mice model showing that it could potentially stop the progression of this disease.  However, that is really all we know.  It is currently under review with the FDA and hoping to have it fast tracked.  That means it could be available as soon as six months.  That is amazing news to think that there MAY be hope.  The problem is that it is up to principal investigators to determine who will be involved in this trial.  We do not know what the criteria is.  Do they want participants that are in the early stages, later stages, a certain age or a certain progression of the disease?  We have no idea.  We left the conference with this amazing feeling that we might be on the brink of something life changing for Nathan.  However, the more time that has gone by, the more we have thought about it.  What happens if he is not accepted into the trial?  There is a carrot dangling in front of us and we want it so bad, all of these parents do.  How does anyone possibly decide who gets it and who doesn’t?  Again, WE ALL WANT TO SAVE OUR CHILDREN!  We have been at the lowest of lows and have some indication that something great may be coming, but I am afraid to have hope. I am afraid to allow myself to feel that out of the utter despair that may follow if Nathan doesn’t get in.  I think that would absolutely devastate us all over again.

So this is where truly the hardest part comes in, one that I admittedly am not good with, Trust!  I like to have control over situations, to know that I can do something.  I have to allow myself to trust that there is a bigger picture, one that we may never even know.  I know that Nathan’s life has such a purpose and that God is the author of his story, not me.  It has already been written, we are just the ones reading along.

Pray for our family, that we are able to continue to look forward to a future of hope!

Stacey