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☺.
8 thoughts on “The truth”
I so appreciate your sharing this with us…I honestly believe until you have walked in the shoes of special needs parents you have no idea what daily challenges we face. From day to day. hour to hour etc. I pray that you can feel our support and that our prayers for your family in some small way ease your days and nights. Keeping you and yours in my daily prayers..Love and Hugs… t
Dear Stacey, My heart hurts for you and your family and I’m grateful that you can share your thoughts and feelings with us in this blog and I know everyone that reads this wishes they could do something to ease your burden. Thank you for your courage and your willingness to share your pain. I hope it helps you to share and eases your burden even in the smallest way. Also I hope it is comforting to know people are out there praying for you four! Take care. Carol Allen
I have experienced the pain you describe caring for our son Nathan “Nate” diagnosed with a cancerous brain tumor of the right frontal lob that controls executive order thinking. Caring for him as his disease progressed became excruciating, harder as the cancer took away his ability to know how to care for himself. When people would say, “ I can’t imagine“ I would say, “ Don’t go there if you don’t have to. I don’t want you to ever worry about facing such a life”.
Reading your raw story, the reality we have shared is loving our “real Nathans” in spite of the daily struggle and pain…wanting to keep loving while, with every breath, wishing your precious son, you, your husband and daughter were not in this awful place. Living with the fear of when the fatality of the diagnosis will change all your lives forever, fearing the ending can never take away the unwanted sadness of missing everything both hard and loveable about your child.
Thank you for sharing. I believe it does help in some oddly meaningful way to know there are those of us who truly do understand; can feel the reality of loving and hurting with every breath.
I also want you to be aware there is a wonderfully exceptional family (first initials K, A, K, and C) who knows us both. Because of that I will always be following your journey and praying for the daily strength to which you cling.
Your post reveals a courageous mom with an incredible family and some very special friends. You are doing everything possible to live each day for each other. That’s what we do as long as we can without knowing how.
Hoping that you feel the hugs and prayers of your extended BDSRA family. Remember the “S” stands for family. We are here if you need us. Thanks for sharing all your photos on FB.
Nathan’s battle will never leave my heart, and your battle to deal with all of it either. How can we help? What is needed most right now to make this a bit easier for you? Please, let us help. Always in my prayers!!! I love you guys!
Honestly, he needs friends to come visit. He misses people. No one comes to see him ever and he is always alone with us or a caretaker. Just to know people remember him is huge.
I love you, Stacey and Jay, Madison and Nathan. Your sweet family is my treasure. I am blessed. Mom
I love you guys! I do not have the pleasure of knowing Nathan except through you as I am miles away. I often seek out your Facebook page just to know how he is and how you and your family are!!
However, I pray for you Stacey, for Nathan, for Madison and for Jay often! And I will continue too! I will always be here for you when you need an ear or support in any possible way! I really appreciate the vulnerability and candidness of this post. It helps me to understand a sliver more than I can. I do know I love you and am praying for a miracle and am always here in any way you can except me. I miss you guys! Hugs to your whole beautiful family!!