Beginning a New Chapter

Yesterday we went to see, what we expect to be, our son’s last new specialist. It was an emotional day for me because this felt like our last chance for new ideas. We left empty handed. All we have left to do is implement his care plan, which is straight forward albeit time-consuming.

Have you ever had the feeling you’ve hit the end of a chapter? Today feels significantly different from yesterday. Yesterday our son’s care plan still had the potential to change. Today we know exactly what we need to do for at least the next six months. While his care takes up the majority of my day, it’s a relief to know the load isn’t going to get heavier even if it doesn’t get lighter.

Is this good news or bad news? It depends on the reader. Readers whose kids have no major medical problems will be inclined toward thinking of it as bad news. There is no cure or fix. There isn’t anything else we can do to help. Readers with medically complex or special needs kids will see something different. Once you’ve been through specialist after specialist, repeated hospital admissions and multiple procedures, a stable child with a solid diagnosis can sound great.

My feelings are complex because he’s my son. I want to fix it for him, but I can’t. There’s always that touch of Mom guilt whispering in the back of your mind that you could’ve handled this or that better. Overall, I am thankful for a child who is medically stable despite his diagnosis.


2 responses

  1. I think you are thinking of it in the exact right way, now that you have a solid plan you can just focus on the now, and there are medical advances every day in all sorts of fields. You never know what tomorrow will bring. For now, make sure you put that mother guilt firmly in a high cupboard. We are all just doing our best and learning as we go. You sound like a wonderful, caring mum who works tirelessly for her son.xx

    Liked by 1 person

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