The need to be held

This has been a very emotional week for me.  It is the one year anniversary of saying goodbye forever to my Daddy.  It has brought out a lot of emotions in me that I don’t think I realized were there.  It has made me think about things that I don’t want to think about.  It has left me sad and longing for more time.  More time with him.  Each day that goes by does not get easier, it gets harder.  It is a permanent reminder about the fact that my Daddy is not here.  I want him to be here.  I am selfish, I want him to hold me and tell me everything is going to be ok, even when I know it is not.  I want to hear his voice and laugh, see his smile and listen to his words of wisdom.  I wonder if he knew just how much I loved him, how much I admired him and thought he was the greatest man in this world?  I do not know how you pick up the pieces when you lose a parent whom you loved so much.  I understand now when people say it is like a piece of their heart is missing.

This week has been an especially hard week with Nathan as well.  He has been having some pretty intense meltdowns. They can last for a few minutes or for hours.  Afternoons are really hard.  He has been very agitated and angry.  He says things that he doesn’t mean and I know it is all just part of the disease, but it is hard to hear. It is hard to watch our son do things that we know we can’t do anything to help him.  The fact that our 11 year old son has Dementia is a fact that is just plain wrong.  I have never had any experience with Dementia before and I can tell you it is heartbreaking.  It is like the Nathan that was there a year ago isn’t there anymore.  Everyday there is just a little more that is missing.  It might be ever so slight, but it is happening and I can’t do anything about it.  It is ripping me and Jay’s heart out.  It is not like Nathan has a cold or a broken bone where we can take him and fix it.  There is NOTHING we can do but watch.  Watch as this disease breaks our little boy.

We all as human beings have the same basic need to be held.  Whether that be emotionally, spiritually or physically, it is a need inside of all of us. I feel a desperate need to be held right now.  I have developed a different relationship with God through all of this.  I have had my moments of anger and not understanding why this would happen to our little boy, but overall, I feel a much stronger connection with him.  I feel like I am being held by God.  I think it is only by the grace of God that I am able to get up everyday and do what I do.  I feel emotionally held together by Jay.  If I didn’t have him, I would not be able to move forward each day.  He and I have been through so much together and I can honestly say that I would and could not do this without him.  He is so strong, strong enough for the both of us.  Physically, I wish I could hold Nathan. He won’t let me though.  He does not like to hug me.  Every now and then I get the perfect Nathan hug and I wish I could freeze time, because they are truly the best hugs!

If I could give one piece of advice, it would be do not wait to tell someone that you love them.  Pick up the phone and tell them.  Drive to their house and tell them. Life will not wait. Life is short and precious and you need to let those around you know that you love them.  Try to be a little kinder to those around you.  We are all fighting battles that not everyone can understand, and the world needs people to just be better to one another.

As always, thank you for loving our family.  Your thoughts and prayers are so appreciated.  We appreciate the words of encouragement.  Please continue to share our story to help spread awareness so that one day there can be a cure for Batten Disease.



Why I hate Batten Disease

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

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.