Will It Ever Be Enough

I hung up the phone Thursday and cried. Not because I had received bad news exactly, but because I was beginning to wonder whether anything I did would ever be enough.

After that call, I felt defeated.

The call concerned an appeal I've been working on for my son, Leo. Once again, I found myself trying to prove the extent of his disability to people who have never met him. I've submitted evaluations, professional opinions, and documentation of his needs. But apparently, it still isn't enough.

What made that call so difficult wasn't simply being asked for more documentation. It was the fear that I might never figure out exactly what they're looking for. That I could spend weeks gathering records, making phone calls, and searching for answers, only to have Leo denied again.

And then what?

So now I'm digging through records from years ago, searching for something that will somehow convince someone of what has been evident to those who know Leo for most of his life.

When will it ever be enough? Because I can't keep doing this.

But I will keep doing it.

Hopefully, I'll find exactly what they're looking for, even if it means more phone calls, more emails, and more hours searching for details of Leo's early development.

I will not give up, even though sometimes the process feels designed to make me do just that.

It often feels that way in the world of disability services. Every new requirement takes more time away from the very people I'm trying to help.

Why doesn't anyone take the time to actually meet Leo? They're making decisions about his future based on a name and a collection of uploaded documents. 

But there's another part of this process that's been unexpectedly difficult for me.

Every day I look for the gains and growth in Leo's life. I focus on what he's accomplishing in school, therapy, and everyday life. I marvel when he plays a song on the piano just from hearing it. I praise him when he asks for something in a complete sentence. I smile with pride when he completes a task all on his own.

But lately, this appeal has overshadowed so much of that progress and growth. Instead of celebrating all that Leo can do, I'm continually being asked to document everything he can't. To reduce the son I know and love to a collection of deficits in order to get him the help he needs.

I've spent the past few days going through old evaluations, school records, and therapy reports. Some of them date back to when Leo was barely three years old. It's strange to read those descriptions of my little boy and recognize so many of the same difficulties we still face today.

And that's been harder than I expected. 

I know Leo has made progress. I've witnessed it, celebrated it, and thanked God for it. And I know he still has significant challenges. Those two things have always been true.

But there's something difficult about having to look backward through years of struggles when you've spent so much of your life encouraging him to bloom.

I never imagined I'd find myself hoping that the documentation of some of his earliest years would be what finally convinces someone of how much help he still needs now.