Bouncing off the Walls

During late fall and throughout the winter months, our family has to be extremely careful around germs and germy places. Bouncing off the Walls qualifies as one of these "germy" places that I don't normally take my kids. But, during the summer months, we try to let our kids get out and do things we don't normally let them do. So, Monday, I surprised Jorie and Josh with a trip to this place! Tons of bounce houses as well as toys of all types. Perfect place for a really hot day or a really cold day! This was Josh's first time. Jorie had been before. Josh wasn't so sure about going into the bounce houses at first. But, after about an hour or so, he warmed up and then we couldn't keep him out of them! Such a fun place for kids. One of the many things I will never take for granted. This was something Ryan would never have been able to participate in.

Jo-jo

Missing my little girl this week. She is staying with her cousins and from what I hear, she is having a blast; depsite the not so good weather! We have lots of nicknames in our family and Jorie's nickname has always been Jo-jo. When she was a baby, it was "baby Jo" and soon after it became just Jo-jo. Kind of funny because my nickname as a little girl given to me by my dad, was Lo-lo. ;) I miss Jo-jo. But, I am taking this opportunity to get some things done around here that are a little easier to do with only having 2 kids!

The Fourth and Sam's visit

July 4th is Ryan's favorite holiday. Mostly because it's warm out and Ryan has a much easier time in the warmer weather. But, also because it means he gets to spend a week with his best friend, Sam. These two boys have such a special bond. They met when Sam was 7 and Ryan was 9. And from the moment they met, they were inseperable. That is until Sam and his family had to move away about 4 years ago. Since they moved, the two keep in contact with phone calls and writing letters. We love having Sam here. He is such a neat kid and is so helpful to me around the house. Jorie also became really close with Sam's younger sister, Lily. They exchange letters as well. We actually drove to pick Sam up this time so we had the chance to visit with his family and Jorie got to see Lily! We spent the entire day with their family and then went to dinner together. Such a fun little family trip! Sam went home last week. But, Ryan and him are already planning for his next visit. Hopefully, it will be this fall so they don't have to wait a whole year before seeing eachother again!

Comments

For whatever reason, blogger has changed how I can comment on my own blog! I greatly appreciate when people leave comments....but for now I cannot figure out how to respond back in my comments section!! :(

My boy

There are many things in this lifetime that we will never have the answers to. For our family, many of these unanswered questions happen to revolve around our oldest child, Ryan. Most of my readers know that Ryan was born with an incurrable disease called Spinal Muscular Atrophy (SMA). Because of this disease, Ryan has never experienced what it feels like to walk or move his body independantly of his 300 pound powerchair. But, in addition to not being able to walk, which is HUGE of course...there are many other things that he cannot do. As I was tucking him into bed last night I realized once again just how weak he is and how weak he has become. His disease is progressive and he will continue to get weaker and weaker as time goes on. It's something that we (my husband and I) try hard not to focus on or it will literally tear us up inside. As I was positioning Ryan's bipap on his face (a machine that he wears nightly to support his shallow breathing) as well as turning on his pulse-ox and connecting him to his feeding tube, he asked me if I could lift his right arm up. He said he had an itch in his left ear and he needed to scratch it with his right arm reached up across his body. When possible, he wants to scratch his own itches so rather than scratching it for him, I lifted his arm up so he could reach his ear. He then realized he was not able to scratch the itch and asked me to hand him a q-tip. (he has recently placed several q-tips in his cubby so he can easily access them without our help). I handed him a q-tip and he proceeded to try and scratch this itch again. Finally, he asked me if I would help him. So, I took the q-tip and scratched the itch inside his ear for him. He let out a huge sigh and again and again told me how good it felt to have it scratched! I have done this many times throughout his life. But, I have noticed his arms getting weaker and weaker over the past few years and have been asked to do this more often than before. I asked him how often he has to endure a horrible itch as he cannot reach the area of his body to scratch it himself. Apparently, most of his itches, he is able to reach at this point. But, I couldn't help but feel incredibly sad for my boy. He already has to do without so much and to not even be able to scratch an itch on his body!?!? ARGH!!! There are so many times that I just want to scream in frustration for my son. But, then I realize just how content he is with his life and I can't be too sad for him. I mean if he's not sad, then why should I be?? I can't say he never get frustrated with his disease and how much it robs from him. But, for the most part, he is content. He is an amazing boy for sure. I may never understand why life is the way it is. But, as I've said before so many times in this blog, this life is not forever. And there will come a day when my son will be healthy and whole and no longer confined to his wheelchair. He will walk and run free of disease! No, this life is not forever!!!

Cousin pics!

A few months back I got together with my sisters and asked them if they had anything in mind for our mom's birthday this year. Since she was turning 60, we wanted to make it special for her. Since she is not one who likes big parties or surprise parties, we decided on a unique gift instead. So, this past Easter, when we were all together anyway, we purchased matching shirts for all the boys and put Jorie all in white and took some pictures for my mom! I was a little disappointed with how some of them turned out. But, it is incredibley difficult to get 4 little boys to stay still for even a few seconds! Here are just a few of the shots we got that day. My mom loved them, of course and can't wait to display them in her home!