Spring Break

I apologize for the delay in posting about our Spring Break trip to Disneyworld. It has been a whirlwind last couple of weeks and I feel like I am just getting my feet under me.

We had a really rough couple of months leading up to our trip.  We made the mistake of telling Nathan about our trip, and before you say we should know better, we do.  But there is always that part of us that wants him to be able to get excited the same way all the other kids do.  We realized very quickly that Nathan just can’t handle the anticipation. It is physically and mentally hard on him.  He was coming home from school every day in full blown meltdown mode.  He would scream and hit himself for hours on end which would result in bloody noses and nothing could calm him. It was heart-wrenching to watch.  Nothing we did could ease his mind and he could not understand that we would get there eventually.  It was truly the storm before the calm.  Needless to say up until the night before, I was wondering if we were going to be able to go. 

We had been in constant contact with his Psychiatrist and had a plan in place.  We had been having to give Ativan for days leading up to the trip to help call him down.  It took the edge off a little,  but he just needed to get there.  Flying has always been hard on Nathan. We gave him an Ativan about 1/2 hour before take off and 2 hours into the flight and he did great!  

We headed to the hotel.  This time we stayed at the Fort Wilderness Cabins. We thought they would offer a little more privacy than sharing walls with someone and since we were traveling with his nurse, there are only a select few that sleep 5.  We got so settled in for the night.

The first day we went to Hollywood Studios and unfortunately Jay was not feeling well, so he went back to the cabin to sleep a little. We went on all the rides, after we hit Star Wars first of course.  Once we got Nathan his first lightsaber it was as if his whole body calmed.  He just needed his “fix”.  We rode Tower of Terror ( he had not been on that since he was 5) , I should also say I stood in line and let the three of them ride while I waited at the bottom for them.ūüėČ. We also rode Rock’n Rollercoaster  (our favorite) and Toy Story Mania. We had a great day and really enjoyed spending some time together. Nathan met a bunch of princesses and proposed to all, who accepted of course!

Over the next 6 days we went to Epcot (We even ran into another Batten family, which was wonderful to see them), Magic Kingdom and Animal Kingdom. Nathan was truly a champ through the whole trip. We even had one night where we left Danielle (Nathan’s nurse) and Nathan at the cabin and were able to take Madison by ourselves back to Epcot and enjoy some one-on-one time with her. It really was a very nice vacation. We all needed a little getaway and I think this was a perfect way to regroup.

We returned home with 12 new lightsabers (yes we were smart and brought a separate suitcase for his new toys). Since we have been home Nathan has been so much better.  We have had some off days but they aren’t the norm right now, and for that we are thankful. There has been a little laughter in the house and that is good.

As soon as we returned,  I had to book a very unexpected trip to Tennessee to support dear friends of ours who’s son passed away from Batten Disease. It was a heart breaking time, but was so thankful I was able to be there to represent our family in support of theirs. 

Since we returned home we’ve had two palliative care meetings. But that is a whole other story that I will save for another time.

Thank you for loving our family and our little boy.

Stacey 

Our cabin

Star Wars- First ride

Building the first of twelve lightsabers

The Storm Troopers saw Nathan and let him feel their outfits

Princess Jasmine

Princess Tiona

I don’t know the name, but she was snarky

Mulan, she was wonderful. She let Nathan feel her entire outfit

Pirates of the Caribbean

It looks like Jay is choking Nathan, but that is how we remind Nathan someone is there with him

Splash Mountain, and yes Madison and Danielle and having a thumb war

LOVE this picture. Thunder Mountain Railroad

And another lightsaber

Epcot

Animal Kingdom. I have this exact picture 3 years in a row, they just keep getting bigger

The tree of life, and Nathan’s monkey ears.

And ANOTHER lightsaber

Back at the airport

Yes, we were exhausted

Nathan turns 13

I will keep it short and sweet, but today, my baby boy Nathan turns 13!!  I cannot believe I have two teenagers. He has been one of the lights of my life.  He has persevered and pushed past limits that I never knew possible. He struggles with so much, yet doesn‚Äôt complain.  He is my inspiration and I admire him greatly. I learn from him daily and he has brought so much joy to our lives.

Today we celebrate him and we are so thankful for a good trip to Disney world to welcome him to being a teenager. We could not have anticipated a better trip and look forward to another year of being his Mom and Dad ‚ô°‚ô°

Madison Elisabeth 

I post all about Nathan on this page.  I never post about Madison, I respect her privacy and not wanting the attention, however today I am making an exception. 

Today, is our beautiful daughter’s 15th birthday. March 12, 2002 at 9:07 a.m. she entered this world and we could not have been more in love.  I loved her before I ever laid eyes on her, but when they placed her in my arms, it was a love that transcends words.  I knew my purpose.  I was made to be a Mom, HER Mom.

Madison has always been an old soul.  She has so much depth to her.  She is strong, compassionate,  loving, caring, kind, sweet, courteous, thoughtful, brave and the list could go on. She amazes me every day. She has done things that I could never do, she has conquered many of her fears and is truly coming into her own.
She has had to grow up fast.  With Nathan as her brother it has changed her.  She sees life very differently than most kids her age.  She has a different set of worries and fears.  But she wants so desperately to be just like all her other friends, she knows she is not, some days that is ok and some days it is not.  We are a very close family who support each other and I hope build each other up.

I wish for her the most wonderful year.  She deserves nothing but the best.  I certainly know how much she has changed our lives, and I know she is going on to change the world some day.  

We love you Madison and wish you a very Happy Birthday!

Mom and Dad


Sorrow

Nathan has had a pretty rough January.  He came down with the flu which kept him home for several days from school.  He developed a horrible cough that kept him up for a couple of nights in a row.  He would cough so hard he could not catch his breath and was begging us for help.  It was a horrible feeling not being able to help him. We took him to the Doctor twice over the course of this illness and received antibiotics both times, cough pills and an inhaler.  We are finally starting to see improvement and he is feeling much better. 

A couple of weeks ago we went to see a rehab specialist about mobility issues.   Lately, Nathan has been having a much harder time walking without assistance. He used to use his cane very well and now he doesn’t use it at all.  He use to walk around our house with no problems and now he wants to hold on to someone every time he needs to go anywhere.  Nathan being a very social kiddo loves going out to dinner or to stores.  He refuses to go anywhere because he is “afraid he is going to fall”. He begs for his wheelchair and oncr we agree then he is excited to go!  At first Jay and I were reluctant to let him use the wheelchair too much, but have come to realize that his body is telling us something.  Whether physically or emotionally, we are not sure, but it is our job to listen. The wheelchair we have now is a standard issue from a medical supply store and does not offer proper support.  Hence the reason for the visit to the rehab doctor.  He has an appointment at a wheelchair company to be fit for a custom wheelchair. This was not an ideal thought for us, but again, we are paying attention to what Nathan is saying.

Tomorrow, we will meet with his geneticists for his normal follow up visit.  This one appointment gives me more anxiety than I can express.  This is the doctor that delivered Nathan‚Äôs diagnosis.  He is a wonderful doctor who I respect very much.  But everytime I sit in his office it is like traveling back in time to June, 2015.  There are moments were I feel like I blackout and do not even hear what he says. At this point, there is nothing they “do” for Nathan.   It is merely to track his symptoms and progression of the disease. I am afraid it won’t be a fun appointment tomorrow as I can see with my own two eyes what is going on.

Sorrow is the best word I can find today to express how I am feeling.  I had a call from his doctor today to give me a referral to a company that builds ramps into your home.  My son is being fitted for a wheelchair.  We are having to start thinking about things like converting my van and remodeling our home.  If you would have told me this would be our lives 12 years ago, I could never have imagined it.  So today I am sorrowful. Tomorrow, I hope to be better, but am learning how to allow myself to feel what I feel.  I have shoved all my emotions down for so long and put on a happy face that it has taken a toll on me physically and emotionally.  I can’t do that anymore.

Thank you to all of you who continue to read our journey.  To those who share our story so that we can continually spread awareness. To those who send a quick message just to let us know you are thinking of us.  It means more than you know and we are so thankful.

Stacey

Oh, you better watch out

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‚Äôs 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.

That’s what friends are for

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.

Jay and Stacey

img_49861.jpg

The work before the work

resized_20160506_100508.jpeg

Our amazing logo

wp-image-1809347811jpg.jpg

Love these shirts

wp-image-307534596jpg.jpg

Drawing raffle tickets

img_52131.jpg

The BEST of friends

wp-image-1040541025jpg.jpg

Greatest group of people on this planet

 

fb_img_1462686572049.jpg

The welcome board

 

 

 

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.

Stacey