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 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.

Stacey

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What a difference a weekend makes

On July 9, 2015, Jay, Madison, Nathan, my Mom and I traveled to Chicago, IL for the Annual Batten Conference. I have to admit, I was a bundle of nerves.  I had run through every scenario in my head. It started with arriving at the airport.  How would check in go, how about the flight?  Nathan can have a hard time on long flights and I don’t like to disturb anyone. How far would the drive be to the hotel?  We were traveling early and the first event was that night.  Would he last the day without having a meltdown?  As you can see that is a lot of worry just to get us to our destination.  Then I had the additional stress of the conference.  I had NO idea what to expect.  I was thrown into this world on June 10th and had no idea the family that would be waiting for us.

We had been corresponding with several families via Facebook on a Batten page for families and we were eager to put faces to names.  But I would be lying if I said I wasn’t scared to death.  It is really hard for me to go into new situations . Especially situations where I don’t know what to expect.  I remember being nervous walking in and the very first thing we did was go to a newly diagnosed family meeting. That is where all the families who have been diagnosed over the last year would meet their host family and have a chance to ask questions or just take a deep breath.  I remember being very overwhelmed in that moment.  We then went on to a cocktail party where we just got to visit with all the other families.  I finally got to put so many faces to so many of the children’s pages that I follow.  That is the night Nathan met his new buddy Joey.  It was like looking at a mini version of Nathan.  Joey is so similar to Nathan is so many ways.  For the first time ever I felt this amazing feeling like there is another kiddo who is like Nathan.  Nathan has always been so unique.  It was like no one ever understood him but in 3 minutes of their meeting, Nathan and Joey were buddies. To follow Joey, please go to Joey’s Journey – Juvenile Batten Disease page on Facebook, he is an amazing little boy with a phenomenal Mom!

The next morning started with Jarrett Payton speaking.  We arrived a few minutes late and were not quite sure who he was.  I kept asking Jay, “who is that?”.  All he could say is, “I think it must be an athlete of some sort.”  He kept talking and there were stories of Michael Jordan being at his house and going to basketball games and seeing Scotty Pippen.  Even I, who doesn’t know much about sports, knew those names.  But I still couldn’t figure out who he was.  He gave a wonderful speech and near the end made a comment about his Dad being called “Sweetness”, Jay leaned over and said that is Walter Payton’s son! Ok, even that one I knew:)  He finished his speech and a few minutes later left.  I have no idea what came over me but I became very emotional.  I needed a minute to myself.  I left the conference room and was walking towards the door in the lobby and I could see Jarret walking back in.  As he got closer to me, he grabbed my arm and said “Are you ok?’  I immediately started sobbing and told him that no, I was not ok.  I proceeded to tell him that our son was just diagnosed on June 10th and was feeling very overwhelmed and needed a minute to breathe.  He told me at he was in his car and ready to go home but something was telling him to come back in and that I was the reason he needed to come back.  He gave me a huge hug and comforted me.  It was a very odd encounter.  I had not cried up until that point except for at the Doctors office in June.  And here I was crying to a complete stranger.  He told me a really nice story about is Dad and we had a nice conversation until I could compose myself a little better.

We spent the next three days in jam packed sessions.  We met with Scientists, Doctors, Researchers, affected families and extended members of those families.  In fact there was one scientist who was there that 24 hours prior had been running with the bulls. He jumped on the plane to be at this conference. There were over 400 people in attendance at this years conference.  It was the biggest turn out yet.  We had mini sessions that we would go to.  We learned about how to better navigate an IEP, how to communicate our needs to our spouse, how to speak with Doctors and get them in touch with the experts in the field, what new doctors might be good to add in to our mix.  There was one session on caring for the caregivers.  It taught us that it is ok to ask for help, which is something that Jay and I both struggle with but are trying really hard to get better at.  One night Jay and I stayed up until 2 in the morning talking to a couple other Dad’s and that night I could have been an expert on seizures.

It is amazing what all these families have gone through.  All of these children are so different, but yet we have all traveled such similar journey’s.  Some like us it has taken years to get the proper diagnosis.  Trying different medications to try to curb an undesirable behavior when in reality, that was never the issue. I think about all the things that we have put Nathan through that maybe we didn’t need to if we had known.

I believe that Nathan has always tried so hard to fit into a box that didn’t quite fit him.  Yes, he has had friends at school and he is happy, but I have never seen him as happy as he was during those three days.  He fit, he belonged and people just got him.  He discovered that he was quite charming with the ladies and there were several marriage proposals and kisses on the checks or hands.  And he even discovered all the gentleman’s beards and was not afraid to ask to feel them.  Everyone obliged and were very gracious about it. There was not single person there that didn’t understand when Nathan was having a problem.  It was normal behavior and I cannot tell you how good it felt to be surrounded by understanding.  I said it many times that weekend that I didn’t want to leave the bubble.

There were groups for the siblings as well.  Madison had lots of kids to hang out with that finally knew EXACTLY how she felt.  They did day trips and went to the Aquarium and to dinner at Medieval Times for dinner.  There were lots of activities she could have participated in if she chose to, but she was uncomfortable.  We were reassured many times by the older siblings that this is very normal behavior.  It is very understandable for her to be completely overwhelmed by what she was seeing.  It may take several conferences for her to feel comfortable with her surroundings. We just want her to be assured that the support is there for her.  We know how hard this is for her.

Looking back I wish walking into the conference I could have known that I was going to feel like I found a second family and maybe taken a little more time to relax and enjoy it and take a deep breath.  Next year for sure.

Stacey

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Facebook site

I am not the most technologically savvy person, so I am not sure how my WordPress site is linked to my Facebook site.  I wanted to let everyone who may not know that I have a Facebook page what it is.  You can find it at Https://Facebook.com/sothathecansee

Sometimes, I update information there more frequently, so I just wanted to make sure everyone knew this information.

Thank you,

Stacey

Well child visit…

We took the kids to their well child visit last week.  I am always so excited to go to those appointments to see how much they have grown.  Nathan is now 5 feet tall and Madison is 5’4”.  I cannot believe how much they have grown over the years. We have had the same pediatrician since Madison was born and with all the issues we have had with Nathan, she really has become like a friend to us.

We have been in and out of so many doctor appointments.  To be honest, most of them talk at a level that is so high that it is hard to make sense of what they have been saying to me.  We have met with Geneticist, Neurologists, Ophthalmologists and counselors and more Doctors than I can remember.  They have always been very thorough in their information, but let’s be honest, these are SMART people.  They give you the information and we try to understand it the best we can, but a lot of the follow up is Jay and I doing our own research on Google.  That is just plain scary.  The problem with Google is that you put in symptoms and it spits out 500 different things that Nathan potentially is showing symptoms of.  Well that is a lot of information to absorb.  I have literally been walking around saying “everything is going to be ok”.  Anytime anyone asks me how Nathan is or how things are going, I just say “everything is going to be ok.”

So let’s back up to the pediatrician’s appointment.  She came in and did all the usual stuff that you do with a Well Child Visit.  Nathan loves this doctor, so the appointments always take a little longer.  She loves Nathan and really enjoys talking with him.  Her husband happens to be an eye doctor and she mentions that she always consults with her husband about Nathan.  Anytime we go to Children’s Hospital, the notes feed into her system so she has been following his progress.  Jay had asked her if she had seen the notes about the Cerebral Atrophy and Cerebral Lesions.  She said yes.  We finished up the appointment and Jay and Nathan went home.  I stayed for Madison’s visit.  

The doctor pulled me into another room and closed the door.  When she turned around, she had tears in her eyes and she started to cry.  She said, “I am so sorry for you guys.  I wish I could turn back the time.”  I am not really sure what prompted me to ask her, but I asked her point blank if she thought Nathan was going to die.  She told me that the part of his brain that is shrinking is the part of his brain that tells his body what to do.  It will tell his muscles to work, his bladder and bowels to work, his lungs to breathe and his heart to beat.  She said the problem is no one knows what is wrong with him yet, but that based on all the notes, the prognosis is not good.  She said this is definitely degenerative and that eventually his body will just stop working.  It was like being punched in the gut.  The sad thing is that I am sure I have heard these exact same words before, but hearing it from her in a way that made sense was the first time that I thought everything is not going to be ok.

Jay has been telling me for the longest time that I am in denial, and I don’t know that is the right word, but I definitely think I am choosing to think everything will be ok.  It has to be.  How could I possibly let myself imagine my life without my child?  It is not normal.  It is not natural.  I don’t want to live in a world without my children.  The sad part is I am slowly realizing that I may have to come to terms with that, but I just don’t know how.  

We have had so much support.  We have and amazing family, great friends and a great community.  We have had people bringing us meals.  They don’t have to, but they want to and that means so much to us.  

I do not have words for the depth of my sadness.  It feels like a piece of me is missing and I do not know how to get it back.  I would trade places with Nathan in a millisecond if I could and I can’t and it breaks my heart.  As a Mom, I am supposed to be able to fix things.  If he hurts, I fix it and I can’t fix this and I don’t know that I can forgive myself for that.  I also see the emotional toll this is taking on Madison and that scares me just as bad.  I don’t think she understands the full extent of what we are facing, but she knows how hard it is for Nathan and us.  She also knows how much she loves him and I think she has thought of her life without him and it makes her very sad, but she does not know how to express that.  Being in 6th grade is not the easiest time in a girl’s life, let alone to have this going on, she has a lot on her plate too.  

I am leaving tonight for a little getaway with some friend to Las Vegas.  I don’t remember the last time I took a vacation without my family.  I know I need to get away and have time to myself, but I feel guilty for leaving.  Jay needs to get away desperately too.  We are hoping to plan something for him soon.  It is hard that we can’t go anywhere together, but if this is what we need to do to have some quiet time to ourselves then this is what we will do.

I beg for your prayers for our family.  We are in desperate need of them.  We do not know what the future holds.  We unfortunately just wait and hope that when and if they find something with Nathan’s DNA; it is something that we can work with.  We pray that it is treatable.  We know that it probably won’t be curable, but let us be able to treat it and get as much time with him as possible.

Stacey