Getty Owl Foundation

Oh My Gosh, So Much To Talk About!

From Kate:

Where do I even begin? There have been a lot of good changes over here at the Storm residence, and I don’t know where to begin to make things sound in sync.

Writing a blog, while fun and exciting, as we journey through this journey, can be difficult sometimes. I often want to do a post immediately and later look back thankfully that I got everything out when I did, while other times, I’m so thankful I waited and took the time to digest what happened first. I wonder if some of you do the same.

This post will be long with lots of detail, but the time it took to write it had nothing to do with my need to digest. We literally had no internet connection for about a week. 🙂 As life continued, more and more things started happening that I wanted to blog about occurred. I grew even more impatient to the point I told Mark to call our new internet provider and urged them to push up our connection date in case of medical emergency, which they did. 🙂

Follow Up to The Run

So where to start to catch up on past events? I want to start with the end of the race on February 26th. So many incredible things happened that day and for us. One of the best parts was having SMA families come in support. One SMA mama even ran in the race. Jen thank you and your dad for participating. I hope you had a great time running. Here we are:

The Crew left to right: Scanlon, Storm, Calafiore, and Phelps families

“Nice to meet you!”

Mama Love

It was a beautiful day and having the Scanlon, Phelps, and Calafiore families there in support just made an already great day that much better. Thank you guys for coming! I know driving is no easy feat and can become quite complicated. Having you all there was very comforting. You all fight hard for your kiddos, and it is always an inspiration to know that with love, know how, and vigilance, our kids can thrive and love life. Kaige, Aaron, and Hayden, we hope you had a terrific time. We know Getty did.

Sadly, this week Mr. Kaige was admitted to the hospital. If everyone can keep him in your thoughts we’d certainly appreciate it. Speedy recovery big guy!

We Moved!

In other news, last spring, Mark and I needed to make some tough financial decisions. It’s sometimes a hard process that I am sure most families have had at one point. We have always been a two parent income, and even with that, we were just skating by. Getty’s care was becoming far more complicated, and our ability to maintain a steady income was almost impossible, especially with Mark being a small business owner. Our home was also not conducive to Getty’s needs. The size and floor plan was making all our lives difficult.

We stumbled upon a house in a neighboring city that offered more space for all of Getty’s needs. Keeping our fingers crossed, it all worked out.

We decided Getty would get the master bedroom. 🙂 Diva!

The walk-in closet is perfect and spacious for all of her clothes and supplies. She has a bathroom in her room which is perfect and so much safer for her to bathe and be transferred to her bed. It has wide hallways for Getty to get around safely. There is room enough right off the kitchen to have her own activity space. She has an easel and all her needed art supplies to make a daily masterpiece. There is a book case full of books, fun games, and school supplies. It makes my heart skip a beat. This space is what she has deserved from day one, and I am just so glad we were able to provide this for her. It really does feel like we have a fresh start.

Our previous house reminded me too much of sorrow and grief that had begun right after Getty’s diagnosis. Even though I am in a different place than I was over a year and a half ago, I still know where my parents were sitting when we had to tell them the news, I still remember where I was when she had her first episode of choking to the point we thought we were going to lose her, and the locations of each and every phone call from specialist after specialist telling us by phone that you can’t do anything to help her, she will die in two years. Talk about baggage. Even though we made beautiful memories in the house the bad times were still lingering.

Moving began right after the race. Literally the next day. We just wanted to get the heck out of there. 🙂 Purging stuff felt amazing. Thanks to Mitzi for coming over to pick up a lot of items we didn’t need anymore. Those items will be sold at San Juan High School’s Rummage Sale on April 14th, benefiting Getty Owl Foundation. You ladies are awesome and I know putting that on is no easy feat. Eileen, Mitzi, Trina, Shannon, and Patti, thank you! More details to come.

We lived in the house for over 6 years and, man, in that time, one can really acquire plenty of stuff — lots and lots of stuff. Patti and Miss Angie gave me good advice, “If you haven’t used it in a year, throw it out!” Even though I cheated a few times, I was able to let a lot of stuff go.

Moving went pretty smoothly. Every night I would drive over as much as the swaggerwagon would let me. Mom, thank you for being my constant co-pilot. I know you were tired and you just kept helping like the soldier you are and I can’t thank you enough. I know you wanted us to have a fresh start as well and I could tell by your pace that you were feeling the need to push, push, push. I love you.

Thanks to Miss Angie and my Dad for helping the moving crew and giving us your time to help us make this transition so smooth.

By Saturday, pretty much everything was in. Patti thank you for being such a big help on Saturday. We knocked out a lot of boxes and I could start to see the light at the end of the tunnel.

Sunday was the day Getty moved in. What an amazing day. We wheeled her around to see the new digs and her eyes got huge. Quite a bit of cooing as well. I have a feeling it was more of a, “Well it is about time I have space” kind of attitude than anything. 🙂 Her room is definitely girly. I infused some blue where I could, but the room is just perfect for her personality and spunk. Pictures to come.

Cooper handled the move great. I think he too was excited by the sheer space. The cats, well that was a different story. They were last to move for a reason. I packed Maggie into the cat carrier, unwilling of course. Richie on the other had was a very willing participant. I think he was just so excited to be a part of something that he ran into the carrier himself. Weirdo! Poppy and Libby, were far too freaked for confinement, so I just threw them into the van. The moment I started the ignition, the craziness began. As I drove I think I morphed into the cat whisperer or a therapist. “You are going to be okay. We’re almost there. Poppy, please don’t get climb on my neck. Libby, you are going to be so much happier when we get to the house.” That was an experience.

So here we are. A fresh start, a new beginning, a chance to start new and more memories in a new place without all the old baggage seeping through the walls.

Getty’s Almost Two!

Our sweet Getty Emelia will be turning BIG #2 on March 25th. It is a feeling of overwhelming excitement. This journey has and will continue to be a winding path. I think what Mark and I have grown to learn is that no one can predict what the future holds for anyone. Getty will be 2 and then she will be 3 and then she will be 4……..do you see where I am going this? She is soldier that is blossoming in front of our eyes and it is an absolute pleasure to be in her graces. She reminds us everyday that all you need is love. She greets us with a smile every morning and as she falls asleep, she always giggles with contentment. Thank you for picking us honey. It is an absolute pleasure.