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   He is withdrawn and shut down.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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