Battles against terminal illness, anxiety, and life!

Every Day is Different

This morning I gently woke Braden up as I do every single school morning. I turned on the side lamp and started disrobing him. So, perhaps the gentle bit was an exaggeration. Regardless of how I wake him up, the point is I am waking him up. That is never a pretty scenario. So, better to just get on with it. His pull up, due to urinary incontinence, is removed and changed. I slug on his pants, pull on his shirt, and put his socks on him. In many ways this is no different from any other parent. Today though it hit me, this is a forever routine.  Gone are the days that I dress his younger three-year old sister, but here I am still dressing him at five years old. Sure, if I give him about thirty minutes he can dress himself but by the end he is absolutely exhausted. That’s how A-T hits you, little punches here and there. While they don’t bring you to your knees, they do affect you. It’s as if the color gray was added to the rainbow. While it would still retain its beauty, the balance is completely thrown and just feels off. Today felt that way to me. It was a beautiful day but tinted with a bit of sadness.

Tomorrow we have a follow-up appointment from Braden’s scoping procedure. I am hoping to give you the run down then. For now, I want to go snuggle up next to my curly-headed little man. I am going to sneak in there, cuddle up next to him, smell his hair because that’s what sane moms do, and give him a much-needed kiss good night.



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