Coming to terms

It has been two weeks since we received Nathan’s diagnosis.  I would love to be able to say that I am processing it.  I would love to be able to say that I feel better now that I have an answer.  I would love to say that now that we know what is going on, we can do something about it.  Unfortunately, there is no way to process this, there is no way to feel better and there is nothing we can do.  I cannot fix this.  I am his Mom and I am here to care for and protect him, and I could not protect him from this.

I do not have the words to express the depth of my sorrow that I feel for the future that lies ahead.  I have had such a hard time expressing my emotions. I cannot seem to cry.  I want to, I want to sob and cry so hard that it hurts, but I can’t and it makes me feel like I am doing something wrong.  I need to grieve, but there is a part of me that feels like I have been grieving for the last 6 years very slowly.  I have watched pieces of Nathan slip away.  He is not the same little boy that he used to be.  I have watched skills slip away slowly.  So part of me does feel like I have been grieving this whole time, but that the full impact of what we found out has not hit me.

I have read everything I possibly can about this horrible disease that will now encompass our lives.  It will take our sweet boy and change him and I don’t want that.  I want to put him in a bubble and save him from what his future will be.

The next phase of this disease for Nathan will be seizures.  I have never been exposed to seizures and truth be told, they scare me like nothing else.  We are exploring the possibility of obtaining a seizure dog.  There is one company that can provide them to children under 16.  We are working on getting an application in to them and then we will have to fund raise in order to get this dog.  It is not my favorite idea, but I am at the point that if it helps Nathan, then we do whatever it takes.

We are going to be attending the Annual Batten Disease conference July 9-12 in Chicago, IL.  We will be taking the whole family and my Mom with us.  We are really looking forward to this opportunity to connect with other families who know what we are facing.  It will be good for all of us to be together and be able to get questions answered and meet with Doctors and researchers and other families. They have break out sessions for Jay and me and even the Grandparents.  I am especially happy that Madison will get to connect with children her own age who have a sibling who is affected by this disease.  There is no one in her life that can possibly understand what she is going through.  It is so critical for her to make some connections with other kids that she can maintain relationships with through this process.  They will have care for Nathan too so that we are able to listen without interruption.  One thing we have been very careful with is that Nathan not hear this word or what is going on. We do not want him to know.  He would not understand and it would be very scary for him.  So I am pleased that there will be volunteers there to help with him so that he is not exposed to all of this.

As always, we ask for your continued prayers for our family.  We are struggling and some days it feels minute to minute. Thank you all for caring about my family and about how we are doing. I ask that you continue to share our story so that we can spread as much awareness as possible about this disease so that we can do all we can.

Stacey

Nathan

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7 responses to “Coming to terms

  1. Broken hearts but not broken faith. You are always in our prayers Stacey, Jay, Madison and Nathan. We love you all.

  2. My son login was just diagnosed with ncl3 he is 8 and are whole family will be at the conference also my heart is broken I am trying to wrap my head around this it truly breaks my heart all I can do is cry, my poor baby 😞

  3. My nephew was diagnosed with Juvenile Batten Disease on May 25, 2015. His parents are feeling exactly the same as you and they are also going to the Chicago conference in July. I’ve been following the story on Facebook of a boy named Parker ( the site is called Parker’ s Path). He also has Juvenile Batten Disease. Parker has been given chemo therapy to weaken his immune system, then transfused with blood to increase his White Blood Cells. This is apparently working to combat the Batten. Apparently he is improving on this treatment, he’s successfully made it through day 48 and the WBC keep growing. I think it gives us hope to see this happening with Parker. Incidentally, Parker and his family live close to Chicago, in Illinois

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