Tag Archives: developmental delays

Why I hate Batten Disease

Posted on by So That He Can See

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

Posted on by So That He Can See

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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The Birthday Quilt

Posted on by So That He Can See

It is only natural for every parent to have certain hopes and dreams for their children. However, those hopes and dreams for Nathan have changed and evolved over the past 5 years but the one thing that has stayed the same is our desire for Nathan to live a long, fulfilling and happy life surrounded by the love that comes from sincere and meaningful relationships. With that said, it has been sad and heartbreaking at times seeing how difficult it has been for Nathan to form close friendships and for him to feel like a regular 4th grader who is accepted by his peers. Nathan has many challenges that make it hard for him to learn in the regular classroom with the other kids and therefore he spends majority of his day in the Learning Lab (Special Ed classroom). Unfortunately, Nathan does not get to go into the regular classroom as often as he would like and when he does it is for very short periods of time.

Earlier in the year, his general education teacher brought in a quilted jacket of hers and let Nathan try it on. She said that Nathan loved wearing her jacket and wore it for 3 days straight. While I’m not sure exactly why he loved that quilted jacket so much but I’m guessing it may be because it had different swath’s of fabric with different textures so he could feel the jacket with his fingers. As it turns out, a surprise birthday quilt project was sparked from the jacket he wore.

The last day of school before Spring Break, we let Nathan take goodies in for his birthday celebration. His birthday always falls on Spring Break so he never gets to celebrate on his actual birthday. Unbeknownst to us, there were many people involved in this project for Nathan and they had hoped it would be ready in time to present it to Nathan on the last day before break. Each child in the classroom was tasked with going home and finding a textured piece of fabric. The teachers and children brought in buttons and fabric made up of such things as sports jerseys, curtains, blankets and shirts. Then, many hours were spent sewing and putting the birthday quilt together.

As a Mother, this gesture was honestly one of the most thoughtful and wonderful gifts he could have received. I have often worried about Nathan not being able to spend much time in the general classroom around his peers and that the other kids would start to forget about him. That is why this was such a great gift that had so much love sewn into it and for the first time I felt like Nathan has been accepted by his peers and that they have not forgotten about him. After the teachers presented it to him during class, Nathan was so happy and came home excited to show Jay the quilt that “all of his friends and teachers” made for him. That made my heart so happy because for the first time he didn’t come home and tell us that he didn’t have any friends.

This year I have noticed the children being very kind to Nathan. I think at this age they understand his struggles a little more and are reaching out to him in ways that I have not seen before. It has been nice when I pick him up and kids run up to my car just to say hi to him or give him a high-five. One classmate wrote him a letter that melted my heart. I had to call his Mom just to tell her how much it meant to Nathan and me to hear what he had to say about his friendship with Nathan.
With as much as we have been through and as much as we have yet to face, this was a moment that I just wanted to hold on to with everything I had. It just felt, if only for a moment, that everything was going to be ok.

I’d like to close with a plea for more prayers for Nathan and our family. Tomorrow morning is perhaps the most frightening appointment at Children’s Hospital that we have had to face thus far. We will be getting the genetic test results back where they have been testing for up to 230 various disorders including Degenerative Neurological Disorders. We have been waiting for these results since last November when his blood work was sent off to Harvard University. We are in desperate need for some good news. A positive test result for one of these disorders could be life threatening and life shortening.

From the bottom of our hearts, we thank you.
Stacey

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My Daddy…

Posted on by So That He Can See

It has been a really rough couple of weeks around here. My Dad, Nathan and Madison’s Papa, had carotid artery surgery on January 30th. The recovery was not the best. He was tired and he did not really have much energy after the surgery. He was sore and just not his usual self. On February 15th it got to the point where he needed to be taken to the Emergency Room. If anyone knows my Dad, if he asks to go to the Dr. then it really has to be bad. He had severe internal bleeding. The problem is that they could not find the source. They ran a bunch of tests, but it left the doctors stumped. They transported him from one hospital to another in the hopes that they would be able to figure out what was going on.

They did many tests that did not reveal anything. They finally they had him swallow a camera pill. That was on Thursday, February 20th. They hoped to get the results that evening or the next morning. Mom was with him the whole day and it was just another normal day in the hospital. I had talked to him earlier in the day and he sounded fine to me. I had just gotten into bed for the evening and the phone rang at 10:15 and it was my Mom. The connection was really bad and I could not hear her at first. Then I heard her and she said, “Your Dad has collapsed and they had to resuscitate him and he is on a ventilator, go to the Emergency Room.” My heart sank. I immediately called the best neighbor and friend in the world and said I need you to come and stay with the kids. Jay and I were in the car in a matter of minutes.

We drove to the hospital and we made very good time. When we got to the ICU, Dad was hooked up to all sorts of tubes and wires and a ventilator was breathing for him. The doctor came to talk to me and Jay and told us that he had collapsed in his room and they had to do CPR for approximately 6 minutes. They told us he had suffered a massive heart attack. They were doing everything they could to help him. Then my brother and Mom got there. We all got around my Dad’s bed and prayed. It was so sad to see him like that. I remember when he had open heart surgery and he was like that afterwards and it was a sight I never wanted to see again. We stayed for the longest time just being with him and talking to him. Around 4 in the morning, Jay and I had to leave to get home to get the kids to school. My Mom and brother stayed the night. We went home and slept for a little bit and then went back to the hospital.

The camera pill produced results; they were able to find the source of the bleed. Friday, Dad went in for surgery to remove a portion of his small intestine and his appendix as a precaution. They were pretty confident that they found the source of the bleed. Time would tell. Dad spent several days in the ICU. He was able to come off the ventilator and was able to recognize us. He was a little confused; we would have to remind him where he was at times. It is very common, especially in the ICU to become disoriented. There are no windows, no light, and no sense of time. I can only imagine how frustrating it was for him. He was moved out of ICU on Monday night.

This past Friday they did an angiogram to determine the damage done to his heart. It turns out that his heart is only operating at 20-25%. He needs to have stents put in, however the kind he needs require him to go on two blood thinners for 12 months. Once the stent goes in, they cannot take him off the blood thinners. So while they were doing the angiogram, they had told us if they could fix it at the time they would, but if they didn’t feel comfortable they would not. They decided not to because they wanted to check with Dad’s surgeon to ensure that he was confident that they removed the source of the bleeding. They cannot risk putting him on blood thinners if there is a chance of him bleeding again.

So, all the doctors will talk on Monday and come up with the best treatment. Then on Tuesday they will do another angiogram to place two stents. At this point that is what we have been told. Dad is very tired and just wants to go home. Mom has been by his side every day. She is the most amazingly strong woman I know. She has woken up every day, driven a 30 minute drive, spent the day sitting with Dad and then drives 30 minutes home and does it all over again the next day. She is exhausted, but never once has she complained of anything. She is just plain remarkable. I could not ask for a better example of what it means to love someone. She loves my Dad with her whole heart in the most unconditional way.

On Tuesday, Jay and I have to take Nathan to Children’s Hospital for an overnight stay. He will be having an MRI under general anesthesia and then we have to check into the Epilepsy Monitoring Unit for an EEG. Needless to say, my heart is torn. I want to be with my Daddy to make sure all goes well, but my son needs me with him. It will be a hard time for us, but we are all doing what we need to do to get through a very tough situation.

We appreciate the prayers for our family. We have been through a lot and have a long way to go. Thank you for loving my family. It means the world to us to know that we have people who care.
Stacey

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No Apologies…

Posted on by So That He Can See

This past week, we surprised the kids with a trip to Disneyworld. I will make no apologies, no excuses and would go toe to toe with anyone who questioned my judgment in taking the kids out of school for a few days. My children are still young, they still believe that anything is possible, they still dream BIG. And we try to show them that there is so much fun to have in life.
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We come home to a Neurology appointment this week that has been looming over our heads for awhile and I think that this trip was our “calm before the storm” moment. We needed this time to go be carefree and have fun as a family. We have a lot of big events coming up in the next couple months with Nathan’s health that we are really trying to live each moment to the fullest. We do NOT know what the future holds for him and we want to make each day count.

We woke the kids up early Tuesday morning and told them at breakfast that they would be on a plane in a couple of hours headed to Disneyworld. Nathan squealed with excitement, while Madison very quietly processed what we were telling her. She did not believe us until we showed her that her bags were already packed. Then it was off to the airport. The Captain let Nathan sit in the cockpit and in his chair and took pictures with him.
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Once we got to the hotel, we got to go see the Pirate themed room that we had booked. Lately, Nathan has been very interested in Pirates, so that was really fun for him to see that he was sleeping in a pirate ship. We got to hit all the parks, Animal Kingdom, Magic Kingdom, Hollywood Studios and Epcot. It is wonderful because Jay’s sister lives there, so we get to spend all our time with Madison and Nathan’s Aunt and Uncle and Cousin. It really makes our time there more special.
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We met a wonderful gentleman who fought in World War 2 and told the kids stories of his time there. He told Nathan all about how to be a gentleman. He told us how he hopes to live to be 135 so he could go in the book of records.
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We met another wonderful woman who has a 10 year old adopted, non-verbal Autistic brother and she was very drawn to Nathan. On her own, she went and got him a Mickey hat, a pirate sword and other cool things for him to have. She told us we made her whole week. Her brother lives in Tennessee and she had been really missing him, so she enjoyed spending some time with Nathan.
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We watched the fireworks at Magic Kingdom and while I don’t know what Nathan actually saw, it was dark and he was able to tell us when he saw the light in the sky. We rode all the rides, most of them several times. They would let us ride a couple times in a row since they knew Nathan loved it. Both of the kids’ favorite was Rockin Rollercoaster. It is a great ride that shoots you 0-60 in 2 seconds and blasts music in your ears the whole time. They would get off and beg to go again. It was so wonderful to see the smiles on their faces.
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We are very fortunate to be able to make these memories with our children. I know that they will last for a lifetime. That has always been very important to us, that the kids have lots of memories to draw on forever.

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Coming up this week is Nathan’s Neurology appointment. I will let you know what we find out there. We have a follow up eye appointment in March and then the final DNA result appointment will be on April 1. That is the one that should hopefully finally provide the answers we have been long awaiting. As always, we will keep everyone posted.

Thank you for continuing to keep our family in your thoughts and prayers. They are very much needed and we feel them. We are blessed to have such a wonderful community that is supporting us.

Stacey
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