Children of ALS

This is a repost

The day we introduced you to these three letters, it altered our lives and relationship irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.

Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.

I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.

Now instead of talking about your future plans we have conversations about my wishes; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days are spent caring for me.

Memories flood your mind while tears flow from your heart. My suffering has ended, yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.

Once these three letters take hold, they never ever let go…
A-L-S.

TJ&O

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