Just one of those days

Today was just another Monday.  Nothing out of the ordinary really, but one that got to me.  I had a Doctor appointment scheduled for myself.  It is an appointment that I should go to every year, but haven’t been in 5 years.  When the Doctor came in she had a note in her file about Nathan.  She casually asked me how Nathan was doing?  She said “last we talked he had been diagnosed with Autism and had some issues with his eyes”.  It was a simple question and one that I have been asked numerous times.  Most days, I can rattle off the information with a straight face and just keep going.  Perhaps I was feeling slightly vulnerable  (all you ladies reading this should know what I am talking about:)  However, this time, I wasn’t able to just rattle the diagnosis off.  I wept in her office while wearing a lovely paper gown.  It was pretty pathetic, but I just kept crying.  It was like I went back in time a year and a half ago and it was raw and new.  She was kind and listened and hugged me ( a little awkward-again, the paper gown thing) but I appreciated that.  Sometimes, I just need someone to listen.  I don’t need someone to fix it, they can’t, I don’t need a problem solver, because you can’t solve this problem.  I just needed an ear today and she gave it.  Afterwards, I had to go to work with my swollen eyes and pretend that my eyes are just watery and have been bugging me lately.  I would have loved to have gone home and curled up in bed and just been quiet all day, but that wasn’t in the cards for today.  So I had a little time to feel sorry for myself, catch my breath and go about my day.

A couple of weeks ago, Nathan had an experience at school that has left me pretty upset. His teacher called me near the end of the day and told me I needed to come and pick him up.  I asked her what was going on and she informed me that he was sitting on the floor and crying saying he could not walk and that he had forgotten how to walk.  He was trying to hit the staff (something he has never done before).  I asked her if she thought he really could not walk and she said that he had been playing basketball earlier and she just figured he was tired.  I let her know that I was on my way to pick him up.  Half way there she called back to let me know that security had been called and they were able to get him up on his feet and he was very apologetic.  They got him on the bus and when he got home he just kept saying the same thing that he forgot how to walk and that his legs were not working. I posed the question to the Batten community to see if anyone had any ideas.  I emailed his Pediatrician to see if she had any thoughts.  My first thought was maybe it was the hole in his ear that could be causing his balance problems.  We have been noticing that he is having a harder time getting around the house and seems unsure of where things are and grabs for things more than usual.  He also always wants to be holding on to someone at all times.  His Pediatrician came back and said that she did not believe the ear would be causing the problems I described and feared it was neurological and progression of the disease.  She recommended making an appointment with his Neurologist.  Another Mom from the Batten community suggested a walker.  The kind that has 4 wheels and a chair attached.  If we tighten the wheels and someone guides him, perhaps it would help him feel more balanced and if he was tired, he could sit and rest.  My Dad had this kind of walker so I asked my Mom if we could use it to try it.  She brought it to us and we will work with him around the house to see how he does.  I spoke with his teacher today and she thought it was a good idea.  She said that lately he has been saying he feels like he is going to fall when he is walking.   This just makes me sick to my stomach.  It is one more thing that is being taken from him.  Our house or car is not ready for him to be in a wheelchair, my HEART is not ready to have that happen.

I absolutely cannot put into words the depths that I would go to so that Nathan would not have to suffer anymore.  I would give my life in a split second if it meant saving him.  I am his Mother.  I am supposed to protect him from harm.  How can this be happening to him? What in the world are we supposed to do?  We sat in a Doctors office on June 10, 2015 and were told to go home and enjoy every minute with him.  To take him everywhere and make memories.  That is a very double edged sword.  We are doing everything we can to make memories with him, but it should not come along with a Doctor telling us our son is going to die.  I want my children to bury me, not the other way around.  It is during these moments that I am reminded of the following poem

Footprints in the Sand

One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
“Lord, you said once I decided to follow you,
You’d walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don’t understand why, when I needed You the most, You would leave me.”

He whispered, “My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you.”

This is definitely one of those moments in my life that I feel like there are only one set of footprints, but not because they are mine, but because I KNOW that I am being carried through this.  We all are, Jay, Madison and Nathan too.  We cannot do this on our own, we have faith that God is with us and will never leave us.


Madison said to me the other day that she was sad because she realized that she had never had a normal conversation with Nathan.  She sees her friends with their siblings and gets upset that she does not have that type of relationship with Nathan.  They don’t play the games together that all her friends do.  She has never been on a bike ride with her brother.  There is nothing “normal” about her relationship with Nathan.  But what she does have with him is so incredibly special.  He looks up to her and loves her so much and she looks up to him.  She is so amazed at what is able to do and what he goes through on a daily basis.  She has the most unbelievable heart of any person her age I know.  I am so grateful for her.

This is just one day that had me down.  Tomorrow will be better, it has to be.  I go to bed each night and pray that I can just get through tomorrow, and then do it all over again.

We do wish everyone a very Happy Thanksgiving.  Through all of this, we are very aware that we do have so much to be thankful for.  May you be able to see all the blessings in your life. Below is a song that has really been speaking to me lately.  I hope you enjoy it.



Welcoming the New Year

When I look back at 2015 there are so many mixed emotions that flow through me.  It was a year of devastating heartbreak, but also a year full of blessings.  I would never of thought I could say that 6 months ago.

We had a very full year.  In January, we took the kids to Disneyworld for our annual trip.  We try to make as many memories as possible and this is one of the happiest places that they love to go to.  We had a wonderful time.


In March, we went on our annual Cruise.  It was a wonderful time to just relax with the four of us and spend some quality time in the beautiful Caribbean.  We always enjoy going on cruises as it forces us to slow down a little and appreciate the time we have with each other.

In May, Jay and I were able to take turns going on a brief getaway to Vegas.  I went with one of my best girlfriends and had a great couple of days getting away and recharging my battery.  When I returned, Jay left a few hours later with his Dad and got to do the same.  We realized that we really do need to take some time for ourselves.  It is so important that we are ready to face another day and sometimes that means getting away to breathe for a minute.

Then came June and the day that forever changed our lives.  The day that Nathan was diagnosed with Juvenile Batten Disease.  It was a day that I will never forget.  I can tell you exactly what he was wearing, what room we were in and the exact words of the Doctors.  The reality is this was Nathan’s story.  We just finally knew what it was.  This was written before he was born and it unfortunately took this long for us to know.  However, with the knowledge of what he was facing, we were better equipped to help him and work harder at finding a cure for him. What I would not be able to tell you at that time, were the blessings that would follow that diagnosis.  I know that doesn’t seem to make sense and it sure didn’t to us at the time, but looking back now, we can see them.

Less than month later, we were on a plane to Chicago to attend the annual Batten Disease Support and Research Association (www.bdsra.org) conference.  It was not a coincidence that we received the diagnosis and had 4 days to book the trip.  This was another blessing we received.  We found a second family that we would be able to connect with and that was fully able to support us in that time.  We met so many amazing people and walked away with a deeper understanding of what our lives would look like.  There is no sugar coating it, it is not good.  But we learned so much and realized that time is not on our side and we cannot take one moment for granted.  This organization has done so much for our family and countless others.


In August and September, Jay and I were able to take two trips together for the first time in 9 years.  It took a bit of creative scheduling to make sure that Nathan was taken care of, but it worked out and having alone time with Jay was something that we needed so desperately.  That was one of the things that kept us going.  It was a much needed break from the day to day routine that we have been living for so long.  Again, I cannot express enough the importance of taking some time for yourselves if you are caring for someone with a long term illness.

In December, we hit what I would say was one of our all time lows.  Nathan was hospitalized and it was a scary time for us as a family.  He was going through some pretty scary stuff, but again, there were blessings in there too.  He was able to get hooked up with the Doctors that we have been trying to connect with for months, he was able to get his medications evaluated by the appropriate people and he was able to get into the day treatment program that helped him adjust to coming back home.  During this time, our community rallied in a way that I cannot put into words.   They not only fed our bodies, but our hearts and souls as well.  We came home to a meal every night.  They were left in coolers on our porch and it might have seemed like a small gesture to the ones who left it, but it was one of the biggest gifts to us.  To be able to provide a warm meal to our family in the midst of a crisis was nothing short of a tremendous blessing to us.  I have said it before and I will say it again, I do not know if we could ever express our gratitude for what each and everyone of you have done for our family.  In the middle of this storm, it was like we had a life raft to cling to.  We feel the waters are calming a bit and are looking forward to each new day.

Nathan is in a much better place right now and that is all we can look at is RIGHT NOW.  This disease will progress and he will change and sometimes it is minute to minute, but right now, he is good and for that we are so thankful.

Madison is a beautiful, 13 year old young lady who is struggling to find her place in all of this.  I cannot imagine what it must be like for her.  This is her brother and this is all she has known.  She sees her friends siblings and how they play together and she does not have that and my heart breaks for her. She knows the severity of this and I think has had a really hard time coming to terms with it all.  We are very open with her and she knows that we are here for her for anything. Sometimes, we see her shutting down and we have to do our best to pull her out of it and sometimes she just needs to escape.


I feel like I should be so thankful that 2015 is over and in some ways I am, but there was so much good that did come out of this year.  We are cautious about speeding up time too.  We are not guaranteed time with this disease, it can turn on a dime and we take each day with a sense of appreciation and gratitude.

We wish you all a very healthy and happy 2016.  We hope that you will continue to pray for our family that we can navigate the rough waters and keep learning to appreciate the little things in life. We thank each and everyone of you for reading our story and sharing it so that we may continue to spread awareness in the hopes of finding a cure for our son.

Jay and Stacey


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 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.



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.



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,


Coming to terms

It has been two weeks since we received Nathan’s diagnosis.  I would love to be able to say that I am processing it.  I would love to be able to say that I feel better now that I have an answer.  I would love to say that now that we know what is going on, we can do something about it.  Unfortunately, there is no way to process this, there is no way to feel better and there is nothing we can do.  I cannot fix this.  I am his Mom and I am here to care for and protect him, and I could not protect him from this.

I do not have the words to express the depth of my sorrow that I feel for the future that lies ahead.  I have had such a hard time expressing my emotions. I cannot seem to cry.  I want to, I want to sob and cry so hard that it hurts, but I can’t and it makes me feel like I am doing something wrong.  I need to grieve, but there is a part of me that feels like I have been grieving for the last 6 years very slowly.  I have watched pieces of Nathan slip away.  He is not the same little boy that he used to be.  I have watched skills slip away slowly.  So part of me does feel like I have been grieving this whole time, but that the full impact of what we found out has not hit me.

I have read everything I possibly can about this horrible disease that will now encompass our lives.  It will take our sweet boy and change him and I don’t want that.  I want to put him in a bubble and save him from what his future will be.

The next phase of this disease for Nathan will be seizures.  I have never been exposed to seizures and truth be told, they scare me like nothing else.  We are exploring the possibility of obtaining a seizure dog.  There is one company that can provide them to children under 16.  We are working on getting an application in to them and then we will have to fund raise in order to get this dog.  It is not my favorite idea, but I am at the point that if it helps Nathan, then we do whatever it takes.

We are going to be attending the Annual Batten Disease conference July 9-12 in Chicago, IL.  We will be taking the whole family and my Mom with us.  We are really looking forward to this opportunity to connect with other families who know what we are facing.  It will be good for all of us to be together and be able to get questions answered and meet with Doctors and researchers and other families. They have break out sessions for Jay and me and even the Grandparents.  I am especially happy that Madison will get to connect with children her own age who have a sibling who is affected by this disease.  There is no one in her life that can possibly understand what she is going through.  It is so critical for her to make some connections with other kids that she can maintain relationships with through this process.  They will have care for Nathan too so that we are able to listen without interruption.  One thing we have been very careful with is that Nathan not hear this word or what is going on. We do not want him to know.  He would not understand and it would be very scary for him.  So I am pleased that there will be volunteers there to help with him so that he is not exposed to all of this.

As always, we ask for your continued prayers for our family.  We are struggling and some days it feels minute to minute. Thank you all for caring about my family and about how we are doing. I ask that you continue to share our story so that we can spread as much awareness as possible about this disease so that we can do all we can.