As most of you know we are very last minute planners. Lenn came home at 6:00 p.m. and said "let's go". I should have known and planned and packed but I didn't want to do all that work just to unpack it. We packed that night and headed to Provo the next morning, planning to hit the Woodruff parade on the way. We got to Woodruff a little earlier than planned and had the pick of the parking places. We stopped at the Post Office to mail a letter and Bentley came out and said "are you sure the paraded is today?". "Yes", Lenn and I both said we had check with the highway patrol the night before and he told us it was the next morning at 10 a.m.. Come to find out he was wrong. The parade would be the following Monday!!! Bentley was just glad we hadn't unpacked the camp chairs and waited. We were on a great start for the day!One of the reasons we couldn't decide whether to go or not is Owen's stroller. We no longer have a stroller that works for him. I called a SMA Mom to see if she knew of anyone that had one available. She told me no, but she told me what they did with their son years ago when strollers weren't what they are today. The story is hilarious, but I will keep it short. They rigged up a mechanics creeper and pulled him around where ever they went. Creative I would say. After talking to her I thought of our wagon we used when Owen was a baby and asked Lenn if he could figure something out. He went to work and rigged up our own homemade ride. Owen doesn't fit real well in the wagon but Lenn did a great job at making it work to carry him and his equipment. ~Some of the Johnson cousins~
Some of Lenn's family has a tradition of sitting outside the BYU stadium for the Stadium of Fire. We joined them this year and had a great time. I didn't get any pictures that night because I was holding Owen. He loved the fireworks, the louder the better. He would be watching with a small smile and then a noisy one would go off and he grinned from ear to ear. Bentley and Abby loved them too. I don't know what is more fun for them, the fireworks or playing with cousins while we wait for the fireworks.
While in Provo we called some of our friends from the NICU, Nic and Ashley. We haven't seen them since and it was so nice of them to come and visit. I have talked of them and their little angel before. Owen and their angel Mercydez share birthdays. We were so lucky to get to meet them while there. They have been such a strength and inspiration to us. Ashley's blog often serves as therapy for us. She is always so loving and positive when talking about her angel. Their family will always be very dear to our hearts. They are such sweet people, they showed up with friend magazines for the kids to read on the way home and a huge sack filled with lunch for all of us. After they left Bentley looked in the sack and said he would eat their lunch anytime. Thanks Nic and Ashley. This picture of Nic and Owen wasn't the one I wanted but will take it. Nic was talking to Owen and I could see the love Owen had for Nic. He was smiling and really into Nic. I was trying to get my camera without disturbing the moment but by the time I got it Nic was getting ready to leave and had told Owen good-bye. So that smile from Owen isn't on camera but will forever be in my mind.
In the search for a new stroller for Owen we were able to meet another SMA family, the Riggs'. It was a great experience. Last fall we saw a story on a SMA family, the Coleman's. We started following their blog and happened on to the Riggs family blog. Their little Karson wasn't doing well and our hearts hurt for them. We followed their journey and contacted them through email and phone. It seemed like Karson's Mom, (Jody) and I quickly bonded. I had emailed her asking about Karson's stroller, she emailed me back offering his stroller to us to use for Owen. We were so touched by the offer. We were also excited to have found a new stroller so quickly. We set up a date and we met.
Abby was really excited, she had written to Hadley a few times and couldn't wait to meet her. We were in the Home Depot parking lot but the kids didn't seem to mind. They played and giggled for about two hours while Lenn and I visited with Jody.
It was so good for us to meet another family like us. Their Karson passed away in January, and of course they are hurting but they seem like a great family that will continue to be great through their trials.Bentley even enjoyed the time spent. He mainly teased and chased the girls, but had a good time anyway.We didn't try Owen in the stroller that day in the parking lot for obvious reasons. We also wanted his PT to fit it for us. While we waited for the PT, I adjusted the stroller to as big as it would go and put Owen in it. At first he cried, then I made it a little more comfortable and he didn't mind it too bad. When his PT came, we tried to find a way to make it longer, but no luck. Owen is just too big! So it was a nice try and so nice of the Riggs to let us try. We are grateful to them and very grateful we were able to meet Jody and Hadley.
We are a family that have learned we have no control of our future. We are taking it a day at a time and enjoying the ride.
Lenn and I have four children. Two of which were born with a very rare muscular disorder. Neither one have an exact diagnosis but it is some kind of Spinal Muscular Atrophy.
Our other two children are healthy and active.