Our 13 year old son has been diagnosed with Juvenille Batten disease. This is a very rare neurodegenerative disorder that is fatal. This is our journey.
Because Santa Claus came to our house today! We had been looking for a way to take Nathan to see Santa this year but wanted it to be in a low key setting. Taking him to the mall or somewhere like that is almost impossible due to all the sensory issues.
Over the weekend a dear friend of ours contacted me and said she wanted to have Santa come visit Nathan at our house! It was the perfect setting for him to visit with him as he is comfortable at home. It was an offer we couldn’t refuse.
We sat in the front room and heard a loud jingling noise. They were loud bells that Nathan heard through the front door. He went to open the door and was so excited to hear Santa. He came in and talked with Nathan for a very long time. Nathan told him about how much he loved Star Wars and all the things he wanted for Christmas. He has not been to see Santa since he was 4, and he was having a hard time remembering his list. Nathan tells us something new everyday that he wants and I think it was hard on the spot to remember everything. He just kept saying “I want something I have never had”. He felt Santa’s beard and buckle and gloves. They talked about his Reindeer and his elves. Nathan asked Santa where something was and he replied in his truck. You could see the wheels turning in Nathan’s head and quickly said, you have a truck? Santa was quick and said “Have you ever heard of Uber?”. It was really funny.
He took the time to sit with Madison. I was not able to hear the whole conversation, but I did hear him tell her he understood how difficult it is for her and that she is never alone. Madison told me afterwards how much it meant to her and how much she enjoyed it. He brought each of the kids a gift tailored to them. A Star Wars book for Nathan and a coloring book and colored pencils for Madison.
He even took time to visit with Nathan’s nurse Danielle. He told her she had a hard job but that it was rewarding.
It may seem so simple to those who are able to take their children to visit Santa each year. I will say to us, these are treasured memories. We have happy memories because it was in an environment that was friendly to Nathan which makes everything better.
From the bottom of our hearts Santa, thanks for coming to visit our little family.
I am a horrible person for not writing about this sooner. I have thought about it literally a thousand times and every time I try to sit and write about it, I know that no amount of words will ever do justice to what my heart wants to say.
Jay and I are blessed with the BEST friends in the whole world. I have always been a pretty private person and don’t let a lot of people to close to me. I have an amazing small group of friends that have done so much for me that I doubt I could ever repay them in any meaningful way. I wish that they each could peek into my heart to know how I feel about them and know that I would do anything I possibly could for them in a heartbeat. I know life is crazy and my days are consumed by all things Nathan, but I am here for you all too.
Back in May we had a fundraiser for Nathan. However, you would have to start that off backing it up to the August prior where I sat on my oldest girlfriends couch and we threw around ideas of what we could do. It lead to a couple more get together’s and more conversations. It lead to conversations I was not even privy to. It lead to a wonderful graphic designer who designed Nathan’s logo out of the goodness of her own heart. It lead to old friends and new friends coming together all to help our son. I would like to think that all along the way, it touched people’s heart as they learned a little more about our little boy and helped spread awareness about Batten Disease.
I will be the first to admit that I had NO idea the amount of work that went into fundraising. For those of you that have done this understand the amount of work that goes into this. Months and months went into planning for this event. We had the space donated, we had T-shirts made, we offered it online, it was advertised in so many different ways. It was pretty amazing to see it all come together.
I was so nervous the day of, I was afraid that no one would show up. I was wrong, there were easily over a hundred people there, not to mention the ones who were bidding online! We went early after work and helped set up. There were over 100 vendors or people that had donated items. We had anything from fast food items to a safari to Africa. It was unreal. The hours that our friends put in to sending letters about Nathan or making a phone call or driving all over town to get the packages is nothing short of wonderful. I just cannot say enough how much Jay and I appreciated everyone’s time and effort that they put into this. I am still in awe at the graciousness that our friends showed by donating their time and talents to make sure this was a success. And for all of you that came or bid online or even made a donation to our GoFundMe account, THANK YOU! Those two words are not adequate. There is not a word in the dictionary that would ever describe the gratitude we have.
We are so pleased to say that through everything, we raised $29,547.36.
This far surpassed any reasonable expectation we had. We have already been able to remodel Nathan’s bathroom to accommodate his needs with this. He know has a walk in shower, with grab bars and a seat so that he is safe. The entire bathroom has been fit to his needs. He has gone from screaming through bath time to actually enjoying it. It is amazing to see!
From the absolute bottom of our hearts, THANK YOU! A million times over, thank you.
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.
I have wanted to write a post for awhile and have many things swimming around in my head, but every time I think to write one, all the thoughts get jumbled and I feel like I will just be a confusing mess. I’m going to give it a try, and apologize upfront if it is scattered.
There has been a lot going on with Nathan lately in terms of mood and new schedules and new people coming into Nathan’s life.
About 2 months ago Nathan’s behavior took a turn for the worse. Nothing had changed , we couldn’t figure it out. However, one thing we have learned is that when his behavior changes drastically, something could be going on with his body that we aren’t aware of. He made one comment one time that his tooth hurt. We made an appointment for the dentist and Jay took him in. It turned out he had two loose baby molars that were not coming out, but the adult molars were coming in and pushing against his gums causing pain. Nathan has a very high tolerance for pain, so he didn’t express it other than behaviorally. The dentist was able to reach in and pull the molars out without a problem and even got a cleaning in with NO cavities. That amazed me since brushing his teeth is extremely difficult to say the least. Almost as soon as the appointment was over, his behavior was right back on track again.
Recently, we have secured 2 CNA’s for Nathan!! We now have help everyday except Monday which has literally been a lifesaver and could not have come at a better time for us. Jay has transitioned to a new job within the same company and is putting in very long hours, so the extra help at home has truly been my saving grace. They have transitioned well into his life and he really enjoys spending time with each of them and looks forward to them being here.
About a month ago, we did a medication change and 2 weeks ago Nathan’s behavior took another turn for the worse. Fearing again that something physically might be going on, we took him to the Pediatrician on Sunday to check his ears ( he is notorious for ear problems). Everything checked out just fine. So we backed into it and are hopeful that it is the medication change. We went back to the original dose on Monday and are hoping to see a positive change soon. We have had some good moments, but are not quite on track yet.
We have reached out to our Church who have a Special Needs room to see if our CNA could come be with Nathan during the service so we can get back to attending Church. They said yes, so pending a couple of things we are really looking forward to going back. I feel empty in so many ways, that I am seeking help from the best source I know.
Nathan has been doing pretty good at school. He does not really talk about it much, so we get most of our information through a back and forth document provided by his teacher. One thing we have really noticed is how terribly lonely he is. His days are surrounded by Music Therapist, Behavior Therapists, CNA’s, Jay and me. The one thing missing from that are peer friends. He doesn’t have any. Middle school is very different than elementary school . He does not have recess anymore, so he doesn’t have that connection with them. At my request, he did have a friend come over last week for a couple of hours. He was beside himself with excitement. It was such a joy to see him so happy. Madison had a friend over and he did too and it was the first time in I can’t even say where it felt normal. It is hard to not have those connections anymore . It is those moments that just make me mad and sad. It is a hard thing to express. We just want him to be happy and we will go to the ends of the earth to ensure that he is.
Sorry for the lengthy post. We appreciate all of you who have stuck with us, it means so much.
I took Nathan in to the Pediatrician for his well child visit a couple of weeks ago. She was amazed at how tall he was. He is a little over 5′ 7″ now and grew 3 inches in the last year. He loves going to this Doctoe as she always wraps his arm up in a “cast”. He is off the charts in terms of height and weight for his age, which we all knew 😊.
The first month of school has gone amazingly well. I thought for sure that it would be a difficult transition for him, but he completely suprised me! He loves his new school and teachers and has started to make some new friends (although can’t ever remember their names 😊). He is always thrilled when someone from his elementary school stops to say hi!
We have had a couple of rough days. There is some staffing changes at school which may be playing a part in why this week has been a little more difficult, however, we are really optimistic about all that this new year brings!
Madison started High School and it has gone wonderfully as well. She is settling into a routine and has really enjoyed it so far. She has joined a couple of clubs and we can see her starting to really come in to her own. It makes us so happy to see her so happy. She deserves it so much!
On a happy note (for me), I am leaving on Sunday to go to Mexico for the week with a girlfriend! I could not be more excited to go relax on the beach for a bit, but as always, hesitate to leave my family. Jay does such a great job while I am gone and my Mom is going to come stay and help out too. We all need little breaks and this one is coming at a great time.
We hope all is well with everyone and appreciate you coming along on this journey with us.
On the eve of Nathan’s first day in a new school, I pray that he encounters children who are kind to him. All he has ever known his whole life at school is getting ready to change. You hear the anxiety in his questions that he asks. He is asking if his old friends will be at his new school. He is confused about new friends being there. New teachers, a new classroom, a new layout to the school that he is unfamiliar with. I would be lying if I said I wasn’t scared. I hope tomorrow is a wonderful day for him.
Madison starts High School tomorrow which brings another set of fears. Hers are more vocal, she is able to express her anxiety. I am so beyond proud of her for facing a huge fear of hers, but knowing she is going to do amazing.
A favorite song of ours is “Humble and Kind”. I hope my kids are always Humble and Kind. I hope if Madison ever saw someone hurting or alone, she would be a friend. I hope if someone sees Nathan lonely or afraid that they might be that friend to him. ♡♡
You would think that a family like ours who has been given a diagnosis of a terminal illness with no treatment or cure would cling to any and all ideas of hope. And trust me when I say we do. But let’s back up a step. On June 10, 2015, our world changed forever. When we were given the diagnosis of Juvenile Batten disease we were told there was no treatment or cure for this disease. We were told what symptoms to expect and how the disease normally progresses. We left with a 6 month follow up appointment to track symptoms and that was pretty much it.
Thirty days later we were on a plane to Chicago to attend the annual Batten Disease conference. Again, we went in with hope.We spent countless hours listening to doctors, researchers, scientists and other parents searching for answers, looking for hope.We found a commonality among everyone who attended. They all had children who were slowly slipping away from them. We were all there for the same purpose. We want to save our children. I remember sitting in a session with all the researchers anxiously awaiting for them to talk about CLN3 ( the version of Batten disease that Nathan has). They went through all the research and upcoming trials for different versions of Batten. Finally in what seemes like the last 10 minutes they talked about CLN3. I don’t remember all they said, but left feeling like there was not any hope.I remember leaving the conference so excited about the connections I had made with other families, but still felt there was no hope for Nathan in the future.
Fast forward a year to July, 2016. We were now attending the conference in St. Louis. Again, we were in a room with researchers and we waited until the end to hear about CLN3. This time it turns out there is hope. There is some promissing research in the mice model showing that it could potentially stop the progression of this disease. However, that is really all we know. It is currently under review with the FDA and hoping to have it fast tracked. That means it could be available as soon as six months. That is amazing news to think that there MAY be hope. The problem is that it is up to principal investigators to determine who will be involved in this trial. We do not know what the criteria is. Do they want participants that are in the early stages, later stages, a certain age or a certain progression of the disease? We have no idea. We left the conference with this amazing feeling that we might be on the brink of something life changing for Nathan. However, the more time that has gone by, the more we have thought about it. What happens if he is not accepted into the trial? There is a carrot dangling in front of us and we want it so bad, all of these parents do. How does anyone possibly decide who gets it and who doesn’t? Again, WE ALL WANT TO SAVE OUR CHILDREN! We have been at the lowest of lows and have some indication that something great may be coming, but I am afraid to have hope.I am afraid to allow myself to feel that out of the utter despair that may follow if Nathan doesn’t get in. I think that would absolutely devastate us all over again.
So this is where truly the hardest part comes in, one that I admittedly am not good with, Trust! I like to have control over situations, to know that I can do something. I have to allow myself to trust that there is a bigger picture, one that we may never even know. I know that Nathan’s life has such a purpose and that God is the author of his story, not me. It has already been written, we are just the ones reading along.
Pray for our family, that we are able to continue to look forward to a future of hope!
