Me Before you…

What does “me before you” mean with respect to ALS?

Me Before you is the first thought a parent has when their child is diagnosed with a terminal condition. It should be me, followed by “no parent should outlive their child”.

When we broke the news about ALS to my mom she didn’t understand immediately, we had to explain. Once the information sunk in so did the realization of what it meant. After we had a good cry and long hug, in true Mexican mom fashion, she said “alguien te iso Ojo!” Someone gave you the evil eye…

Since then she has cried allot, I’m sure, but only a few times in front of me. You see she is being strong for me.

Every time she visits, which is as often as she can, she has news of a new treatment in Mexico or some other foreign country. In addition to doting on me, to a fault. This is her way of showing support and indicating that she is not giving up on her boy.

No parent wants to see their child suffer, but that’s the reality of life. I love you mom! Thank you for spoiling me. I know that if you could trade places with me you would.

Many mothers and fathers are dealing with this very situation at this very moment. Asking the universe, why? Why my child? Anger wells up followed by fear and many questions. None of which have a straight forward answer, if at all.

I don’t speak for all, just myself; this disease is not your fault. You and nothing you did caused my ALS. All you can do, all we can do is be here for each other. Yes you will see me deteriorate and it will rip your heart and soul apart. Know that I love you, simply be at my side during this time. Your love and support are the blanket that wraps and gives me comfort.

So you see, “me before you” is very significant with ALS, every parent of a pALS is living this.

Have a blessed day.

(J Reyes)

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