Summer, for me, is a time of reflection. As a teacher, I have the luxury of slowing down in the summer months and focusing more on my family. The school year is hectic and I feel like I miss out on so much. The summer is my chance to catch up on all the missed therapy sessions and memories made with my daughter.
It’s also a time that is difficult for me. As the years pass by, I realize how very blessed we are that Jordyn is still with us. As she gets older, the disease continues to progress. I see all that it has robbed her of. Therapy sessions are less successful and some days are just bad. We still have more good days than bad, but “bouncing back” from med changes and illnesses is just so difficult now. I see the struggle in Jordyn’s eyes and it’s painful. The light is dimming and her sassy attitude isn’t as loud and bright as it once was. Her voice is a bit softer and her laughter a bit quieter.
Despite the challenges, she never truly gives up. She may do things slower, but she never stops. I used to gauge the success of therapy by how much she could stand or walk. I’m realizing, though, that no matter how “bad” it went, she’s still strong. She gave it her very best that day and that’s all I can ask for. She needs to know that I’m proud of her always and that as long as she is happy, that’s all that matters.
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