Max, the Everlasting

They will tell you he can’t, but he could.

They will tell you he won’t, but he will.

They will tell you to give up, but you persevere.

I remember some our first appointments just after finding out about Max’s infantile spasms. I remember asking the doctor questions on what therapies we should do to help with Max’s regression. I remember being told “don’t bother with any form of therapy, it’s not going to change anything”. I also remember being told “stop googling or researching this. There is nothing you can do.” I also remember thinking, “the hell there isn’t…”.

We have only had 10 short years with Max, but they were 9 years longer than any doctor expected. That’s because we didn’t listen. We became advocates. We researched. We questioned. We pushed back. We formed a team of subject matter experts. We attended conferences. We found therapists willing to work with Max. We did not accept. We fought. Blood, sweat, tears, and all that jazz.

We didn’t do it alone. We had an army of supporters we could lean on. We had people rooting for us.

We had each other. We had Max.

When we felt like giving up, Max would work miracles. He would laugh at something we would say or do. He would balance his head on his own for 30-60 seconds. He would smile when he heard our voices. He accomplished so many small victories (special needs caregivers know how huge that is).

He gave the proverbial finger to those who didn’t think he would make it out of the hospital.

Until that very last time…

Max is still giving us signs not to give up. In a soft breeze, in a golden sunset and sunrise, in a playful ocean wave, in a rock falling from his tree, in the feel of him holding my hand as we walk together.

Max is Everlasting…

They told us he can’t, but he could.

They told us he won’t, but he did.

They told to give up, but we said “Fuck you”!