It’s a little unreal that 2016 is coming to a close. Reflecting on what has happened the past 365 days reveals how very busy we were, some tough stuff, and plenty of happy family memories.
In January I traveled to Dallas, TX for a meeting about Ataluren (the trial drug the boys are on). There I made new friends, many of those friendships will last my lifetime. I left Dallas on my birthday and flew home feeling really positive that Ataluren would receive FDA approval in 2016.
Upon arriving home, a snow storm hit Nebraska. There was so much snow and some extra days off of school and we had a blast! We played in the snow. I have a vivid memory of my husband and all the men of the cul-de-sac out in the snow in all their cold wear drinking a beer like it was a summer evening. There was a blanket fort up in the basement for days and Jason and I even had a night-cap in there one night.
February…well I can’t really remember February so I’m guessing nothing big happened or it was bad enough I blocked itfeom my memory.
In March our daughter played in the Nebraska State Basketball Tournament, her team ended up 3rd. A local newspaper covering one of the games mentioned Lexi “making the biggest shot of her young career…” It was a great shot and for as long as I live I don’t think I’ll forget jumping up and down like a crazy person when she made it.
By March, the Vertin family was also noticing that Pappa (Jason’s dad) was not himself and in some pain. We also traveled to Cincinnati for the boys bi-annual clinical visit. Their check-ups were mostly positive, mainly needing some med changes.
Shortly after Easter, we learned that Pappa had cancer. Jason spent some extra time with his parents those first weeks and months of the diagnosis. Months after Pappa’s diagnosis, Jason’s mom was also diagnosed with cancer. She was very strong, she persevered, and showed us all a little about what determination looks like. There were some tough days; Jason loves his parents so and it is hard to watch someone you love hurt.
In April Lexi turned 15 and is still learning to drive. She prefers to drive with her Dad because “I” make her nervous. It’s okay though, because I prefer she drives with her Dad too because “she” makes me a little nervous.
April was also exciting because Nebraska started a support group for families effected by Duchenne. It has been nice to meet with the other families in Nebraska on a regular basis.
May was a stressful month. We had become very unhappy with our school situation and had made a decision to have all four of the boys transfer back to Hastings Catholic Schools in the fall.
The annual MRC Golf Tournament was held in Crete during Memorial Day Weekend and we loved it. It was also successful enough that we were able to purchase new scooters for Max, Rowen, and Charlie. The scooters have been a great source of independence for the boys.
In June our beloved cat of 12+ years disappeared, we are not sure what happened and miss him very much, especially me. The void he left was filled pretty quickly as we welcomed a new dog, Leia, into our family. She is a good dog and loved very much.
The same day Leia came, Max and Rowen went to MDA camp. It was a special year because their cousin Emma volunteered as a camp counselor and was Rowen’s counselor at camp. It was a neat experience. If the boys continue to go to camp, I imagine that the number of Vertin volunteers will continue to increase! Chance also played in an All-Star baseball game; he enjoyed it immensely.
July was a memory filled month for me. My sister from Texas was home and I was able to watch her son be baptized. Max was finally tall enough to go down the water slides at the water park and he told Duchenne to take a back seat! He was also Michael Darling in the play Peter Pan & Wendy.
I also braved a solo trip to Denver will all of my 6 kiddos. We watched Lexi play some ball and hit lots of the tourist activities. We made lots of memories, my favorite was probably our sandy stop at Lake McConaughy on our way into Denver. We stopped and played in sand and water for a couple of hours and it was awesome! The kids are begging to go back…I hope we can spend a weekend there in 2017!
In August the kids started back to school. Mary missed the big kids but is loving her one on one time with mom. And the move back to Hastings Catholic Schools was absolutely the right move for our family. The kids are happy there, the kids are learning, and therefore, we are happy parents. Chance started tackle football that month and it was a great experience for both Chance and Dad, who helped coach.
August also brought a first for me. The week after the kids started to school, I flew to Washington, D.C. and met with the FDA. If that sounds scary, it’s because it was a little scary. But, by that time, we had learned that the FDA had refused to review the new drug application for Ataluren. I had to go to fight for the boys.
In August I start s to work out and a regular basis and found that I really loved a class call “body pump.” It is a weight lifting/ cardio class. I am getting much stronger physically which is a great help to me as I manually load and unload the boys scooters each day for school.
By September, I had started getting the hang of the blog thing and celebrated Mary’s 2nd birthday with a blog to explain all that she had done to heal and complete our family.
I harvested my best garden to date this past summer and was able to freeze and can quite a bit of vegetables.
September was a tough month though. I traveled alone to Cincinnati with Max, Rowen, and Charlie for their clinical appointments. I got pretty sick with a terrible cold while there and received tough news. Rowen’s abilities had started to diminish quite a bit since the previous appointment and they saw an area of concern on Max’s heart. We had to start preparing our home and van for a time when Rowen may not be able to walk and started, what I felt like, was a new stage of Duchenne care by adding cardiac medication for Max.
In October there was a lot of volleyball. We attended a great family wedding and I finally got some good pictures of the kids all together, in nice clothes, with a great back drop!
The kids really started to settle in and find their niches at school and we finished off the month like most families, trick-or-treating!
Thanksgiving was special this year. Jason’s parents hosted Thanksgiving in their new home and the entire family was there to celebrate and give thanks.
As soon as we got home from Thanksgiving, I knew it was time that our home had a cat again. Lucky for me, the one I wanted had a brother and I had to adopt both. Benji and Kendall are now members of the Vertin family.
December is coming to a close. I havr always been told that holidays were hard for many Duchenne families. That had not been by experience until this year. It was a hard Christmas season, but I was held together by a faithful God, the love of my family, and many many Christmas blessings from our community.
During 2016 we shared out story more that ever, in an even a bigger way, including an article in peoplemagazine.com.
Of course, there was some backlash, but for the most part people embraced us and have lifted us up.
I have often thought over the last year about this: I grew up a foster kid. I was convinced I was un-loveable. Growing up I always put the blame on myself, if I had been a better kid, my mom would have loved me. If I had been more worthy of love I would not be in a foster home.
Over the years that has changed. First and foremost because of the way my husband loves me. He has been the greatest blessing bestowed on me. He loved me first and made me believe I had always been loved, was worthy of love.
And now I have an entire community, a Duchenne family, and many strangers that love me and love my family and give so freely of themselves for me and my family. This year Jason and I have grown even closer. As I have grieved the FDA decisions and grieved the progression Duchenne is making in my sons…he has lifted me up and loved me even more.
There was a lot of good this year and a fair share of tough. I pray for even more good and a little less tough in 2017 for me and for all.
Happy New Year!