I could give an endless list of all the reasons why I hate Batten Disease. I could explain to you all that it has taken from my beautiful little boy. He was once this healthy young boy who ran around the house and climbed on everything. He played sports and was pretty good at them too! Over the years things have changed and that is what caused us to seek answers. However, it seems that since we got our diagnosis, things have changed or perhaps we are just hypersensitive to it.
The little boy who once ran around this house, walks very slowly. He has to feel his way around everything. We have not moved the furniture in 6 1/2 years and he seems to have become more unfamiliar with his surroundings. He wears braces on his legs now. The doctors said “they want to keep him walking as long as possible.” The little boy who used to be able to make up all these wonderful, imaginary stories now has a hard time speaking. He has to concentrate on each and every word. He stutters and gets stuck on the same word. If you were not around him often, you would not understand what he is saying. The little boy who used to see everything, now has to have everything described to him so he can imagine in his mind what it looks like. I know how devastated we are by all that Nathan has lost, I truly can’t imagine what it must be like for him.
Our days have become increasingly difficult. Trying to navigate his wants and needs in the middle of meltdowns. Trying to get him to take his medicine so that he will feel better while he is screaming is extremely hard. Watching him scream for hours about things that do not make any sense is exhausting. For him especially, but I would be lying if I didn’t say that it takes a tremendous toll on the whole family. Trying to rationalize with him when he is so upset and not being able to satisfy him with anything is so frustrating as a mother. I am supposed to be the one who can fix anything. I cannot fix this. I want to so badly.
The last few days have been extremely hard on me. Over the weekend, he wakes up and he just screams and cries for hours. He has come home from school the last two days and is just mad. He will sit on the driveway and refuse to come into the house and just scream. He calls me names and yells at the tops of his lungs. Today it got to the point were two of our neighbors had to come over to offer me help. They were trying their best to diffuse the situation but I can’t help but feel a little embarrassed and so exhausted by the behavior.
The fact of the matter, is that this is not my son. This is not the little boy I used to have. I know that I have to understand and accept that this is the way it is, but I am so angry. I am angry that it is taking his sweet personality and affection and changing him. I know that behavior changes are part of Batten Disease, but I hate watching it. I feel like I am losing him day by day. My heart is broken and I do not know how to glue it back together just so it holds a little longer.
I have cautiously watched what I have written here over the years as I never wanted to portray Nathan in any kind of a negative light. However, this is not Nathan, this is what Batten has done to him.
I truly have tried to focus on the positive, but I feel like I have to be honest as well. Things aren’t so great. It is tough to not have help. It is tough to not be able to leave the house to run to the store. I feel horrible having to call Jay to ask him to stop and get dinner on his way home because I could not cook dinner. I feel horrible that I don’t keep up on the house work because by the time Nathan goes to bed, I am so physically and emotionally exhausted that I can’t even do a load of laundry. I hate that Jay and I can’t go on a date whenever we feel like it. I hate that I can’t have an uninterrupted conversation with my daughter. I hate that she feels so left out. I could go on and on about all the things that I hate, but one fact remains. I love my son with every part of my being. If you could go back in time and tell me what my life would look like now, I would never, ever change it. Of course I would take away this horrible disease that has settled into our lives. But I am blessed with the most beautiful family in the world.
As always, I ask that you please share our story to help spread the awareness of this disease. For more information on Batten Disease you can always visit http://www.bdsra.org.
Thank you for praying for our family and for all the kind words that you send. We appreciate them and are so thankful to everyone. Thank you for loving my family.
7 thoughts on “Why I hate Batten Disease”
My prayers and love are with Nathan an his family …. Batten must be stopped!
Praying for strength for all of you. No one who has not experienced your pain can ever truly understand so we just pray and ask God to give you grace, strength, and perseverance to continue giving Nathan everything that you are able to do. He is truly blessed to have you and Jay and Madison. Special prayers for your precious daughter as she struggles with the terrible reality of this disease. We love you and keep you in our prayers daily.
Just so you know, you are loved and admired for the amazing insight and courage you have in meeting Nathan’s needs. I know how difficult it is for you and Jay and Maddie, at the same time I am stunned and in awe of your perceptive wisdom and clearly deterermined decision to give love in abundance. Tough love is the same emotional strength as happy love, your heart just gives whatever is needed in the moment. Nathan is a special boy; Batten is not his description. He is imaginative and enthusiastic and has super sonic hearing! I love his laughter and dance moves and the giggle with whipped cream on his nose. I love when he lets me read him a Bible story and say prayers with me. You are his chosen Mommy, by God’s design and purpose. He has empowered both you and Jay with the supernatural gifts you need for His special boy, Nathan. You are not falling short, not even a little bit. It is okay to lament. It is a very difficult path you are walking. My heart to each of you…forever. Love, Mom
Love you so much.
Stacy THANK YOU FOR YOUR HONESTY….Batten’s took your son, and you are all grieving the loss and so you should..keep writing….keep sharing your daily up’s and down’s ….Tell us….we are here..we pray for your family daily..and we are your safety blanket…I hate Batten’s for what it is doing to your son and your family… I have shared your story and will cont to so hopefully one day we will find out why this disease exists and how to stop it…Hugs and Love and Prayers…..Patti
Remind yourself and everyone that Batten’s creates dementia in children. Those words and actions are NOT Nathan’s and you know that. Probably very hard to remember at times. He’s not himself, and you DO need help. Where are you with Medicare and respite?
I do KNOW this, but it is definitely hard to remember at times. Batten is what has created this, not Nathan. We were approved for Medicaid. We interviewed a respite company last week. They don’t have anyone now, but are looking to hire specifically for Nathan. So now it is a waiting game. Xoxo