This is going to be raw. This is going to be honest and this is going to be real. I have shared so many stories of Nathan and our family and our journey. I will admit that I have always done so with a “rose colored glass” mentality. I have never shared the true story. What it looks likes or feels like on a daily basis. I would never want to give a glimpse into our reality out of fear that it would cast a negative light on our beautiful son. The fact is Nathan is Nathan. Nathan is NOT Batten disease and sometimes that can be a hard distinction.
His behaviors can be so challenging sometimes. And to say that is coloring it in a way that I am trying to spare him. To be honest, it plain sucks. There are days were he screams for hours. He will hit himself in the head hundreds of times to the point of having a bloody nose. He can sit in his wheelchair and kick his legs so hard that you are sure that he will break the wheelchair. I have scars all over my body from the times he has been aggressive with me. I have a hole in my bedroom door that I look at every night and reminds me of when he had to be hospitalized. We do not go out in public much. The stares got to be too much for me. But saying all this, I will say it feels like we are light years ahead of where we used to be. Either that or you acclimate to where you are. As he gets older, I think his body is regulating some. We have heard from other Batten families who are ahead of us in this journey, that behaviors don’t last forever, but when they are gone you have moved on to another horrible part of this disease. I try to remember that in the moment. I will take all the behaviors and challenges because it means that Nathan is still speaking, still interacting and most importantly still here.
The reality is is that no one gets it and why should they? They don’t live here and honestly, I would not wish this life on my worst enemy. This is a HORRIFIC disease. It has stolen my child bit by bit. He is not who he was. However, he is still charming and witty and charismatic and funny and handsome and I love every single ounce of him, but I HATE Batten disease.
Today, being RARE disease day, I was thrilled and honored to see the people who shared his picture. I cannot put into words what it does to my heart to know that people care. To know that they remember is touching. I will not lie, I have felt very alone. I have felt like people have forgotten. This is a very isolating world where people do not show up often. There have been a few who have shown up and in a big way. There have been moments where they come quietly and I do not even know in the moment, but touches me to the depth of my core. There are moments where they come loud and I am overcome with emotion. To those who have shown up, thank you! It means more than you will ever know.
I am having more and more moments where I am having to remember to breathe. It sounds like such an odd thing, but trust me when I say some days I literally cannot catch my breath. I do it all day long, I go to bed and my head will not shut off. Then I wake up and remind myself to breath all over again. It is exhausting to say the least.
Our life is not easy and there are definitely some things I would change. But I love my children with every ounce of my being and I am so grateful for a loving, supportive husband who loves me and his children with all of his being. We are a tight knit family that you would never be able to break.
To those who have stuck with us through this hell we have been living, we thank you. There are no words to express to gratitude we have for the support we have received. Thank you for sharing Nathan with the world. He deserves to be known, he is such a cool kid☺.