Our upcoming trip

This week we will be traveling to St. Louis for the annual Batten Disease conference. This will be our second time attending.  Last year was such a surreal experience for all of us.  Nathan had only been diagnosed for 30 days and we were thrown into this unknown world. We felt like deer in headlights most of the time and it felt like we were getting CPR for our souls.  I remember leaving and wishing I had relaxed more.  These were people who got it, they knew our story,  they lived our lives and they welcomed us with open arms.

I am not sure why, but I almost feel more nervous this year. Don’t get me wrong, I am really looking forward to it and would not want to be anywhere else, but it is still raw.  We have an opportunity to listen to researchers and Doctors and scientists and all the experts in the field of Batten.  You talk with other parents and caretakers.  You see people who are where you are and others who have been where we are.  You see parents who have lost their child or children.  You see children in all stages of this hideous disease.  But most importantly,  you see love.  You see a big group of people who come together to fight the same fight.  We ALL want to save our children.

I am thrilled for Madison as this is such a great opportunity for her to connect with other siblings who get it, who feel the same sorrow that she feels.  It is 4 days that she gets to be herself and not have to put up any defenses and can talk freely about Nathan if she wants without being made to feel as if her world is not a problem. For other kids to realize what really goes on day in and day out and not have the biggest issue be if the Pokémon Go server is down.

I am excited for Nathan as he will get to hang out with kids that he remembers from last year and meet new kids as well.  They have a daycare program that it wonderful and provides him opportunities to be him and us the freedom to listen to others without him hearing all the scary stuff.  He always enjoys his time and will leave with a few more girlfriends than he started with.

I am excited for me and Jay as it is our opportunity to speak with all the experts and other parents and have some time of real connections.  These are all people we speak to, sometimes on a daily basis through Facebook. We know their children and their struggles, we all feel each other’s pain.

I am excited for my Mom.  It is a chance for her to connect with other Grandparent’s.  To talk about the pain and grief they are dealing with.  This does not just affect me, Jay and Madison.  This affects our entire extended family so much.  They have all witnessed who Nathan was and who he is now and it is nothing short of heartbreaking. 

I would ask that you please keep us and all the familes that are attending this year in your thoughts and prayers as this is a pivotal moment in time for us all.  Please pray for safe travels for all.  Please say a special prayer for us as we are flying and have not had the greatest luck with that the last couple of times we have flown with Nathan. 

I am sure it will take some time to process and decompress once we return, but as soon as I am able, I will let everyone know all about it.

With much love,

Stacey

Batten Disease Awareness

June 4 – 5, 2016 is Batten Disease awareness weekend.  All we ask is that you share Nathan’s story with one person.  Tell one person about Batten Disease. We need more awareness for this disease to help push forward to find a cure.  Share our page with someone (https://facebook.com/sothathecansee) and let them read about his struggles and triumphs.  There are far too many children who are affected by this disease and are losing their fight or have already gained their  wings.  We need a cure and we need it now!  This is an important weekend for all Batten families.
Thank you,
Stacey

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To the 6th grade class who changed Nathan’s life

Today marked another milestone for Nathan.  He graduated from 6th grade!!  For 7 years he has been a member of this school and of this community.  We have had some of the greatest moments within those walls and some of the worst.  Some of the most amazing people have come into his life and ours and for that we are forever thankful.

We are part of a small community that has shown such love and grace towards Nathan.

These are kids that knew him as a little Kindie, played with him, invited him to all the parties.  They played sports with him, had playdates and had sleepovers. They watched him change, some grew weary of him during those years and some stayed.  They days of playdates and sleepovers ended and then the diagnosis came but so did maturity.  These children all have a heart for Nathan and have rallied back around him and shown such love to him.  Love that makes this Mama want to sit down with each one and thank them from the bottom of my heart.  For making him feel loved, for making him feel special, for letting him KNOW he has friends and for not letting something as scary as Batten Disease keep them from loving on Nathan.  We hear all of your names at night.  The ones who sat with him at lunch or played with him at recess or helped him through the school.  He never felt alone. We thank you.  I don’t know if any of you will know the impact you not only had on his life, but ours as well.  It truly has meant the world to us.  You are all destined to be great.  We look forward to watching each of you grow and pray that you always stay humble and kind.

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Disappointed

I am so incredibly disappointed.   We finally were able to hire a CNA to help with Nathan in the afternoon hours.  She was a perfect fit for our family. Nathan bonded with her right away and she was really good with him.  It finally gave us a little room to breathe in the afternoons.   I was able to run errands, make dinner, spend some time with Madison.  It was working out great for about 2 weeks.  She then gave us her 2 week notice.   She had another job and between the long hours, the pay was not enough to make it viable for her.  Since we go through Medicaid, our hands were tied regarding the pay scale.

This was supposed to be her last week with us.  All day today, Nathan was looking forward to seeing her.  He was waiting by the front door, saying her name and excited to play with her.  Imagine how disappointed we were when she didn’t show up or even bother to call.  We sent her a text and called her with no response.  Nathan becomes very attached very easily and we cannot afford to have a revolving door of people come in and out of his life.  He deserves to have someone who wants to spend time with him.  Jay and I had to tell him that she would not be coming back anymore.  This was a conversation we had hoped to have the CNA involved in so he could properly say goodbye to her.  Now, he is left to wonder why she won’t come back.

I understand if the money is so important and you couldn’t make it work, but do not give two weeks notice and then not show up or have the decency to call.  You are a grown up, make grown up decisions!! My child is the only one who suffers from your poor choices.

Silent auction

Don’t forget our online auction goes live at 10:00 PM MST tonight and runs through May 6th at 8:00 PM MST. This will greatly help with the future costs associated with Batten disease.  It will allow us to renovate our home to make it wheelchair accessible, convert my van to be wheelchair accessible and the many other things that we know will come up.

We thank you all for everyone’s support.  It means so much to us.
Stacey

https://www.32auctions.com/organizations/24427/auctions/28968?reset_filter=1

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The trip of a lifetime

I apologize for it taking so long for me to get around to writing about our trip, but between getting back into the swing of things and just doing daily life, it has taken some time.  Plus I really wanted to put some thought into our trip to ensure that I was able to properly convey how amazing it really was.

Our trip really started the morning we left.  We went outside to get into the limo and were surprised to see so many wonderful faces in our driveway, cheering for Nathan!  There were signs and pom poms and lots of friendly faces, some that we haven’t seen in years.  It was literally one of the most amazing things I have ever seen.  We were genuinely so surprised.  One moment that will forever stick out in my head as we drove off, we turned around and all the kids were chasing the limo.  I remember looking at Jay with tears in my eyes and telling him how much I wish Nathan could have seen that.  He is so loved by so many.

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We started our trip off with a wish extension.  We opted for a few extra days to spend at Disney World.  I mean, if we are going to put Nathan on a plane for four hours, we were going to make sure we made the most of it.  That was the hard part of the trip.  Last year when we went, Nathan was able to ride all the rides and go for long periods of time without any problems.  This year was just so much different.  On the 3rd day there, Madison said to me “Mom, we have been here for three days and have only been able to go on 2 rides.”  It was sad to realize that Nathan just couldn’t keep up the same way he used to.  When we travel, we have him in a wheel chair as it is so much easier to get around.  But even with that, it was just so hard for him.  We would get to a park and I think it was just too over stimulating for him and the lines made it had to be patient.  We would ride a ride and then have to leave to go back to the hotel.  We even spent one day just hanging out at the hotel.  It finally dawned on us, that we have to go at Nathan’s pace. I know this sounds like such a simple concept, but when he has been so able to do these things in the past, it was hard for us to realize that he just can’t anymore.  Once we slowed it down, that part of the trip became much more enjoyable.

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Our official Make-A-Wish started on March 11, Madison’s 14th birthday.  My heart went out to her.  What 14 year old wants to spend their birthday in the Orlando airport.  She is just so amazing.  She took it all in stride.  We were able to take her to Macaroni Grill and they sang to her in Italian and made her feel special.

We woke up the next morning and headed to the port.  We were sailing on the Disney Fantasy.  We have been on many cruises, but this ship is truly amazing.  It was beautiful and the attention to detail was remarkable.  We had the most amazing room with the biggest balcony I have ever seen.  It was on the back of the ship and wrapped all the way around.  We had a lovely fruit basket waiting for us.  Throughout the cruise, we would receive little goodies everyday from Sara, our Make-A-Wish coordinator.

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The first couple of days at sea we spent just relaxing and getting to know the ship.  I am sure we never saw half of it, but what we did see was spectacular.  We were able to have down time and rest, which we all needed desperately.  They have a full size theatre on board and we went and watched The Good Dinosaur.  It is this sweet movie that is all about family and how important everyone is to each other. Very fitting that we happened to go watch that movie.  A neat thing that Disney does is something called “rotational dining”  You go to one of three dining rooms each night, but the staff follows you.  It is nice as you get to know them and they know you but you get to go to a different dining room each night.  We started in the Royal Court then to Animators Palate and finally Enchanted Garden.  The Animators Palate is themed after Finding Nemo.  It has TV screens all over the dining room where Nemo, Dory, Crush and other characters will come by your table and interact with you if you are sitting by a TV. We were near a TV but not to the point where we could interact. (Remember this part of the story, it will come into play later:)).

On March 15, we arrived in Tortola, British Virgin Islands.  It is a beautiful island that has beautiful green hills and turquoise water.  Today is the day we were able to do the Dolphin encounter.  We arrived and put our life jackets on and then had to walk down about 7 steps to get into the lagoon.  Once in, you stood on a pretty narrow steel platform that was covered in moss.  So imagine being blind, this could be pretty scary.  Nathan is very afraid of water as it is, so we were not sure how it would go.  Madison had the biggest smile on her face I think we have ever seen.  She loved it.  Nathan, not so much!  He held on to me for dear life.  He was very scared and was having a hard time calming down.  When it is your turn to touch the dolphin and shake its fin and kiss it, they want you to take two steps forward and do hand commands.  We tried to help Nathan but he was not having it.  He was able to hold his hand out and feel the Dolphin when it swam by.  And that was ok, we were not going to make him any more scared than he already was.  We all took our turn playing with the Dolphin.  I will say, it was out of my comfort zone as well, but am so glad that we did it and made a happy memory.  Later in the evening, there was a point where I was alone on one of the balconies and overheard a couple of guys talking about the Animators Palate and how they help do the Crush voice.  I told him that I did not mean to interrupt, but had to let him know how much we appreciated that type of detail having a blind son.  It was nice for him to be able to listen and interact in that way.  The gentleman was intrigued with our story and said he was going to make something happen.  He got our room number and said he would be in touch.

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On March 16 we arrived in St. Thomas, U.S. Virgin Islands.  This island is absolutely beautiful.  It also has the rolling green hills and the clearest water you can imagine.  Today, we went on the Screamin’ Eagle Jet Boat.  They take you out in the ocean and you go really fast and then they do 360 degree turns.  We should have known it was going to get wet when the Captain put on a rain jacket.  He would go really fast and then slam the brakes on and all the water would come over the top of you.  Madison and Nathan both had HUGE smiles on their faces and were screaming happy screams the whole time.  It was an absolute blast.  When we got back, Nathan met this wonderful young lady named Rhonda who of course he proposed to.  They played catch and just laughed together, she was so sweet with him. When we got back to the room we received a call asking if we would come to the Animators Palate dining room the next day when it was closed for a Magical Moment.

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The next day was spent at sea and more relaxing.  That is the best part of cruises, is that the really do force you to relax.  We headed to the Animators Palate and were greeted by several people who worked on the ship. They opened the dining room to just us and sat us in front of the biggest TV screen that they had.  All of a sudden Crush came on the screen and started talking to Nathan and Mackin’ Madison!  What they didn’t know is that I had already given the gentleman information about what Nathan likes and what he would be interested in talking about.  So Nathan and Crush had a conversation which he thought was fantastic.  That was such a special memory for all of us.

March 18, we arrived in Castaway Cay which is Disney’s private island.  This was a gorgeous island.  It is very small, only 3 miles by 2 miles.  When you get off the ship they have a tram that will drive you to whatever part of the island you want to go to. We went to the beach and got snorkeling gear and inner tubes.  Nathan not wanting to go in the water was very content to just sit in a little chair with his bottom in the sand and legs in the water feeling for seashells.  Maddie played in the inner tube in front of me and Jay went to the snorkeling area and saw lots of fish and even a stingray.  It was a very relaxing day.  We had to head back to the ship early as we were invited to meet a Mystery person.  We headed up to the 14th deck which is where the Captain’s area is. We went into this private room with one other family that was on their Make-A-Wish trip as well.  In came Captain Mickey!  It was so cute to watch Nathan feel every part of him.  He loved feeling his outfit and his nose and ears.  Mickey didn’t talk but Nathan had plenty to say.  It was interesting, I had not had a hard time the entire trip, but for some reason in that moment, I could not keep it together.  I started to cry. I think it was the first time on that trip that I realized the reason we were on it.  The gravity of that really sank in with me and I could not keep it together anymore.  Mickey even came over and gave me a hug.  It was nice to connect with another family who understands the struggles of having a special needs child and to see them happy if only for a few moments.

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We spent our last day at sea just relaxing.  We finally talked Nathan into doing the Tube slide.  Of course he loved it!  He was only able to ride it twice as there were about 50 stairs to get to the top and that is a lot of work for him.  I rode with him the first time and then him and Jay went down the second time.  Another favorite thing was the arcade.  We went there every night after dinner.  The kids loved to play air hockey and ride the motorcycle ride.

I can truly say that it was the best week of our lives.  We needed that so badly.  We have had so much heartache and pain over the last couple of years, we needed that moment in time to be frozen in our mind and it has forever been etched in my heart.  We know that so many people prayed us through this trip.  Trust us when we say we felt your prayers.  We know they carry us in the darkest of times and rejoice with us in the happy times too.  We are so thankful for each an every one of you.  It means so much to us that you follow our story and share it with people so that others may know about Nathan as well.  We appreciate all the emails, comments, calls and texts that we get from people just checking in.  It really means more than we could ever say.

From the bottom of our hearts, thank you to Make-A-Wish Colorado  for providing our family with memories that will forever be with us.  I could never put into words what your organization has meant to us and what that trip did for us.

Stacey

Birthday boy!

Happy 12th birthday to my little, big man Nathan today! Today we celebrate the gift of him.  We have been so blessed by him in our lives.  He is sweet, funny, kind, caring and oh so cute. We look forward to sharing more fun photos from our trip soon, but today, we are busy celebrating!  We woke up to this amazing sign in our front yard.  Take a minute to check this company out.  The owner Whitney, generously put this up for him today.  Thank you for all who have commented, he has loved hearing from everyone!

Www.parkeryardgreetings.com

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