It’s been a long 5 days of not hearing “mom”. It’s one of the last words that comes from your mouth every so often and I know it too soon will be gone. I won’t hear your voice again, its pains me to think of this, it brings me great despair that can not be described. All your words taken away from me because of this monstrous disease. I video tape you trying to speak, I hold on to old videos and play them over and over. Yet it is still not the same, watching those beautiful lips move out my name, “mom”. Deciphering your needs and wants have become even more challenging then before. Showing your pictures, or items and you tapping made it easy. Now your blank stare causes me to fall apart. Ripped at all seams. Its heart wrenching your leaving me, the pain deepens even more then the day before. I never thought I could miss someone so much when they are with me every day. But I do. So deeply.
My journey with you continues, although the challenges now become harder. Losing your voice, losing your ability to eat, losing your ability to walk. The chokes, cough, falls and silence are present now, the decisions are extremely difficult. The HOPE becomes further and further, and surrendering to this life becomes closer and closer. It doesn’t make it easier, it doesn’t make it fair, it just makes it all real. The truth hurts. Real bad.
No one is equipped for this journey, my tool bag is empty. I ride each second as it comes, letting emotions take over and then figuring out how to pull myself up again. Always knowing I will hit the ground again, soon. MPS is Relentless. Your winning MPS. Cheating and breaking the rules, and winning.