Make-A-Wish

I have struggled to write about this enormous event that is about to occur in our lives for months.  It seems strange that I would not want to announce it or share information about it.  It is a wonderful organization that does so many wonderful things for kids who have a terminal illness.  And there you have it, a terminal illness.  Just saying it brings tears to my eyes.  Our son is dying.  He will not get better, we cannot treat his body for anything and the fact of the matter is that Batten Disease will be the reason he is taken from us far too soon.  I still cannot wrap my brain around this horrific nightmare that I have not woken up from.

However, Nathan made his wish months ago and all the planning has been done and we are on the final countdown now.  He wished to go on a Disney Cruise to the Caribbean.  He wants to marry a princess.  They cannot guarantee us that they will be able to facilitate a “wedding”, but he wants so badly to get married, that hopefully just meeting one of the Princesses will satisfy him.

We opted to do a Wish Extension, which is where we are going to go a week early and stay at Disney World.  Technically, that is not our Make-A-Wish, so that will be our little family getaway.  Nathan’s wish starts the night before the cruise.  He is very excited to be picked up from the house in a limo and go to Disney.  Of course he is already talking about all the light sabers he wants to purchase and is very concerned that they won’t let us take them on the ship.

We are looking forward to a Disney cruise as we have never done one an have heard great things about them.  Nathan loved the idea of the water slide that allows you to go down two at time.  He cannot do the slides on the other ships we have gone on because they would not let one of us go with him.  This one has a slide that goes off the side of the ship and you ride in double inner tubes.  We have described as much as we can to him and he is really excited. Every day he asks us how many more days.  It is fun to watch him get so excited.

We are so thankful to this organization that provides these types of trips for families in these situations.  It is so important to make as many memories as possible.  How do you make a lifetime of memories fit into such a short period of time?  It seems impossible and daunting, but we are trying to do the best we can.  It seems like time has sped up and that just isn’t fair.  We are so glad Nathan gets to Make-A-Wish, we just hate the reason he gets to make it.

Thank you all for sticking with us, we appreciate it more than you know.

Stacey

 

 

Silent Auction

Ok, deep breath.  I have been putting off writing this for quite some time, however have been encouraged by an amazing group of friends that it is time to get the word out. 

As most of you know with the progression of  Batten Disease,  Nathan will most likely be confined to a wheelchair.   Our home and vehicle is not modified in any way to accommodate his future needs.  The future is very unknown, however there unfortunately are things that we can start planning for now.

We are holding a silent auction here in Denver on May 6th.  It will also be available online for those who live outside the area or are unable to attend.

More details to follow, however right now we are looking for items to be donated that we could auction off.  If you have or know of anyone who has any items they would be willing to donate, I ask that you email Nathansbattenbattle@gmail.com

Thank you all for your love and support of our family.  It means the world to us.

Stacey

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If I could turn back time…

Why are some days harder than others?  Sometimes, I can point to specific things that happen during the day that might make me feel this way, others I can’t always put my finger on it. 

The last couple of weeks I have been reminiscing quite a bit. (Unfortunately I have Facebook to thank for that.  It reminds me everyday of all the memories from years past)  Most are just these sweet little moments in time that I would give anything to go back to and just freeze time for awhile.  To have looked a little closer at what my children were doing, to have listened a little harder to what they said or to have been a little more compassionate in a moment where they needed it.  But I can’t go back and it hurts.

Reality really struck me today when Madison came home with her High School registration packet.  I mean really, High School.   When did that happen?  It just hit me that we are step closer to her going off and starting her life.  And in the same breath, it is another reminder that Nathan won’t.   These moments are so contradictory.  I want to be excited for the future for Madison, but I can’t be excited out of fear of what the future holds for Nathan.

Jay had been having an especially hard time lately.   He is withdrawn and shut down. Little do people know,  we don’t talk about Nathan’s condition.  It is almost a taboo subject in our house.   Sure we will have the occasional discussions about little issues or doctor appointments,  but the nitty gritty details we haven’t allowed ourselves to do that yet.  I have no idea if that is normal or just a protective measure we have put in place to protect our hearts.  But lately, it feels like I am busting at the seams to talk about things.  I want so badly to connect with my husband,  but feel like I have to wait until he shows me he is ready.   There are a couple friends that I talk to, but I am trying to hold back so I can maintain friendships that are not one sided.  Honestly,  I don’t know if Jay talks to anyone.  I think he needs a friend to listen, but he doesn’t want to ever burden anyone with his problems.

We have a small getaway planned coming up and I hope it gives us the opportunity to shake some of the worry off and come back fresh.

We would ask for your continued prayers for our family.  I know I may not put a lot out here about exactly how Nathan is doing, and although overall he is better, the day to day is not great.  We have some pretty terrific moments with him and some not so great moments.  We cling to the good ones with all our strength, for those moments carry us through to the next one.

Thank you to all who have stuck with us during this journey.  Sometimes it is easy to think people don’t remember or aren’t quite as interested,  but so many of you have reached out to us and it means the world to us.

Stacey

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Welcoming the New Year

When I look back at 2015 there are so many mixed emotions that flow through me.  It was a year of devastating heartbreak, but also a year full of blessings.  I would never of thought I could say that 6 months ago.

We had a very full year.  In January, we took the kids to Disneyworld for our annual trip.  We try to make as many memories as possible and this is one of the happiest places that they love to go to.  We had a wonderful time.

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In March, we went on our annual Cruise.  It was a wonderful time to just relax with the four of us and spend some quality time in the beautiful Caribbean.  We always enjoy going on cruises as it forces us to slow down a little and appreciate the time we have with each other.

In May, Jay and I were able to take turns going on a brief getaway to Vegas.  I went with one of my best girlfriends and had a great couple of days getting away and recharging my battery.  When I returned, Jay left a few hours later with his Dad and got to do the same.  We realized that we really do need to take some time for ourselves.  It is so important that we are ready to face another day and sometimes that means getting away to breathe for a minute.

Then came June and the day that forever changed our lives.  The day that Nathan was diagnosed with Juvenile Batten Disease.  It was a day that I will never forget.  I can tell you exactly what he was wearing, what room we were in and the exact words of the Doctors.  The reality is this was Nathan’s story.  We just finally knew what it was.  This was written before he was born and it unfortunately took this long for us to know.  However, with the knowledge of what he was facing, we were better equipped to help him and work harder at finding a cure for him. What I would not be able to tell you at that time, were the blessings that would follow that diagnosis.  I know that doesn’t seem to make sense and it sure didn’t to us at the time, but looking back now, we can see them.

Less than month later, we were on a plane to Chicago to attend the annual Batten Disease Support and Research Association (www.bdsra.org) conference.  It was not a coincidence that we received the diagnosis and had 4 days to book the trip.  This was another blessing we received.  We found a second family that we would be able to connect with and that was fully able to support us in that time.  We met so many amazing people and walked away with a deeper understanding of what our lives would look like.  There is no sugar coating it, it is not good.  But we learned so much and realized that time is not on our side and we cannot take one moment for granted.  This organization has done so much for our family and countless others.

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In August and September, Jay and I were able to take two trips together for the first time in 9 years.  It took a bit of creative scheduling to make sure that Nathan was taken care of, but it worked out and having alone time with Jay was something that we needed so desperately.  That was one of the things that kept us going.  It was a much needed break from the day to day routine that we have been living for so long.  Again, I cannot express enough the importance of taking some time for yourselves if you are caring for someone with a long term illness.

In December, we hit what I would say was one of our all time lows.  Nathan was hospitalized and it was a scary time for us as a family.  He was going through some pretty scary stuff, but again, there were blessings in there too.  He was able to get hooked up with the Doctors that we have been trying to connect with for months, he was able to get his medications evaluated by the appropriate people and he was able to get into the day treatment program that helped him adjust to coming back home.  During this time, our community rallied in a way that I cannot put into words.   They not only fed our bodies, but our hearts and souls as well.  We came home to a meal every night.  They were left in coolers on our porch and it might have seemed like a small gesture to the ones who left it, but it was one of the biggest gifts to us.  To be able to provide a warm meal to our family in the midst of a crisis was nothing short of a tremendous blessing to us.  I have said it before and I will say it again, I do not know if we could ever express our gratitude for what each and everyone of you have done for our family.  In the middle of this storm, it was like we had a life raft to cling to.  We feel the waters are calming a bit and are looking forward to each new day.

Nathan is in a much better place right now and that is all we can look at is RIGHT NOW.  This disease will progress and he will change and sometimes it is minute to minute, but right now, he is good and for that we are so thankful.

Madison is a beautiful, 13 year old young lady who is struggling to find her place in all of this.  I cannot imagine what it must be like for her.  This is her brother and this is all she has known.  She sees her friends siblings and how they play together and she does not have that and my heart breaks for her. She knows the severity of this and I think has had a really hard time coming to terms with it all.  We are very open with her and she knows that we are here for her for anything. Sometimes, we see her shutting down and we have to do our best to pull her out of it and sometimes she just needs to escape.

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I feel like I should be so thankful that 2015 is over and in some ways I am, but there was so much good that did come out of this year.  We are cautious about speeding up time too.  We are not guaranteed time with this disease, it can turn on a dime and we take each day with a sense of appreciation and gratitude.

We wish you all a very healthy and happy 2016.  We hope that you will continue to pray for our family that we can navigate the rough waters and keep learning to appreciate the little things in life. We thank each and everyone of you for reading our story and sharing it so that we may continue to spread awareness in the hopes of finding a cure for our son.

Jay and Stacey

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Discharged!!

Nathan has been doing such a great job at day treatment that he was discharged today!

We have seen a tremendous improvement in his behaviors at home and he was having great days at the hospital.  We are so proud of the hard work he put in to do this so quickly.

The hard part of this all of this is that we still are reminded that he has Batten Disease.  What that means is that his brain is ever changing and it will be fighting an uphill battle to try and stay ahead of the regression and degeneration.  We will constantly have to be on the watch to adjust medicines as needed and to be mindful that he can’t express some things to us the way others might be able to.  We will have to watch for signs and that can be very tricky.   This is still only 6 months new to us and we learn something new about this disease daily.  Let me just say it again, I HATE BATTEN DISEASE.

What I will say, is I am thankful he is home and gets to enjoy his Christmas break at home.  He is excited to be able to return to his school in January.  We are so blessed that this Christmas we have so much to be thankful for.  I will have my family gathered around the tree, and the only present I wanted this year was the presence of everyone. I will miss my Dad terribly like I do everyday, but know he is with us in spirit and nothing would have made him happier than to have his grandchildren have a wonderful day!

Thank you to all for your love and support.

Stacey

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Day 2-4 of day treatment

We have seem some amazing progress with Nathan over the last few days.

One thing we have found is that Nathan has a tremendously hard time with transitions.  We believe it due to anxiety of not being able to anticipate what is coming next.  The day treatment program is working on some strategies to help with that.  Drop off and pick up have gone extremely well, with the exception of one day at pickup.

I took him back in on Thursday to his Pediatrician to check his ear.  It was still full of puss and needed another 10 day course of antibiotics.  We really think his ear is what set all of this in motion.  Hopefully, once it completely heals we will be back on track.

We have made a couple of medication changes that I am sure are contributing to the improved behavior as well.

The plan is for him to return on Monday and we will speak to the Doctors to see what the goal is regarding discharging him.  We really want him to enjoy a break from school as well.

Thank you all for everything.  We are blown away by the love and support we have received  and continue to receive.

Stacey