Why does it go by so fast? I guess it's what we all think when time passes.
But sometimes it really hurts when you see the days on the calendar just get crossed off.
These past few weeks have been amazing. We have worked and worked to give the boys a great Christmas. They were so happy on Christmas morning. But the feeling of one more Christmas gone...one more checked off our journey. It hurts...no one can understand when you feel like there are a finite number of Christmases and each one that passes is one that is now just a memory. (Yes I know no one knows when their time is up but it's hard when you get an incurable diagnosis and feel there is a timeline).
2022 holiday season was definitely different with Wyatt not able to walk at all. It's just different... different to go to places we have been to for years without problems, different because I feel he is "stuck" and I can't do anything about it. Luckily I was able to host a few Christmas gatherings at my house and I now know that it is really the best way to make Wyatt feel comfortable and enjoy the party and it takes the stress and worry off my shoulders. So I guess next year will be just as busy hosting events so Wyatt can feel included and not as a burden at others houses.
So now back to school and as life goes for us it can't just be easy. Teenagers really have it hard these days. Social media is the worst...mistakes become blown up and instead of a heartfelt apology making it better it becomes something bigger.
Wyatt says "I'm not picture perfect, why can't people make mistakes anymore?"
We feel like the storm has settled and that he could go back to school after missing the first day. When I Brough him he was as anxious as he could be and I was just as anxious. The school administration and his teachers have been great keeping me updated on how he is doing. Unfortunately but not surprising he wouldn't go into the first classes because he was so anxious but I just got a text that he went into civics class after lunch. I literally cried tears of joy. Why is everything so hard for my DMD warrior? I wish I could just make the path a little less rocky for him. I was texting with another dmd mom and she was saying the same thing. SO MUCH ANXIETY!
He will only be at school today and Monday and then we are off to St. Louis, Missouri to screen for a clinical trial. I ask that you please set a little intention for things to calm down and for us to have a safe and successful trip and that Wyatt gets into this trial if it is the path that is to be taken.
Happy New Year Everyone! Let's make it a great one and find joy and happiness in the little things in life.
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