Our upcoming trip

This week we will be traveling to St. Louis for the annual Batten Disease conference. This will be our second time attending.  Last year was such a surreal experience for all of us.  Nathan had only been diagnosed for 30 days and we were thrown into this unknown world. We felt like deer in headlights most of the time and it felt like we were getting CPR for our souls.  I remember leaving and wishing I had relaxed more.  These were people who got it, they knew our story,  they lived our lives and they welcomed us with open arms.

I am not sure why, but I almost feel more nervous this year. Don’t get me wrong, I am really looking forward to it and would not want to be anywhere else, but it is still raw.  We have an opportunity to listen to researchers and Doctors and scientists and all the experts in the field of Batten.  You talk with other parents and caretakers.  You see people who are where you are and others who have been where we are.  You see parents who have lost their child or children.  You see children in all stages of this hideous disease.  But most importantly,  you see love.  You see a big group of people who come together to fight the same fight.  We ALL want to save our children.

I am thrilled for Madison as this is such a great opportunity for her to connect with other siblings who get it, who feel the same sorrow that she feels.  It is 4 days that she gets to be herself and not have to put up any defenses and can talk freely about Nathan if she wants without being made to feel as if her world is not a problem. For other kids to realize what really goes on day in and day out and not have the biggest issue be if the Pokémon Go server is down.

I am excited for Nathan as he will get to hang out with kids that he remembers from last year and meet new kids as well.  They have a daycare program that it wonderful and provides him opportunities to be him and us the freedom to listen to others without him hearing all the scary stuff.  He always enjoys his time and will leave with a few more girlfriends than he started with.

I am excited for me and Jay as it is our opportunity to speak with all the experts and other parents and have some time of real connections.  These are all people we speak to, sometimes on a daily basis through Facebook. We know their children and their struggles, we all feel each other’s pain.

I am excited for my Mom.  It is a chance for her to connect with other Grandparent’s.  To talk about the pain and grief they are dealing with.  This does not just affect me, Jay and Madison.  This affects our entire extended family so much.  They have all witnessed who Nathan was and who he is now and it is nothing short of heartbreaking. 

I would ask that you please keep us and all the familes that are attending this year in your thoughts and prayers as this is a pivotal moment in time for us all.  Please pray for safe travels for all.  Please say a special prayer for us as we are flying and have not had the greatest luck with that the last couple of times we have flown with Nathan. 

I am sure it will take some time to process and decompress once we return, but as soon as I am able, I will let everyone know all about it.

With much love,


4 thoughts on “Our upcoming trip

  1. Congrats enjoy…Love and Hugs Patti

  2. All our love and prayers will be with you all. This sounds like a wonderful time for all of you to learn more and be able to feel free to express all that you go thorough on a daily basis. Julius and I will keep you in our prayers.

    1. Thank you so much Aunt Sue and Uncle Julius. Xoxo

  3. Michelle Brinkman July 11, 2016 — 11:12 PM

    Wishing you much peace, love and enlightenment on this part of your families journey. Will definately keep you in my prayers.

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