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’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.


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


The work before the work


Our amazing logo


Love these shirts


Drawing raffle tickets


The BEST of friends


Greatest group of people on this planet



The welcome board