Dear Social Security Administration,

Stop wasting our fu*king time! I’m begging you. I’m coming close to a breakdown and my family needs me. I appreciate that there are people who wish to take advantage of the “system”, but I assure you — we are not one of them. AND, I realize that there are people who might not clearly qualify to receive Social Security benefits. Unfortunately, Jack more than qualifies.

1.) Are you working? No
2.) Is your condition “severe”? Yes. I find this almost insulting to answer.
3.) Is your condition found in the list of disabling conditions? Jack has five of these conditions.
4.) Can you do the work you did previously? Never worked.
5.) Can you do any other type of work? Jack cannot bag groceries, shred paper or walk down the street without someone holding his hand. I’ve often thought he would make a great professional hugger, but I’m not sure that it would pay the bills.

Several months after filing for Social Security benefits, Jack qualified and you sent us a shinny “Award Letter” (that’s really what it’s called – nuts) with his first check. The next week, you sent a letter that it was time to review his case to see if he was still disabled under the disability rules for adults.

I know that there is a need to reevaluate a person’s eligibility every so often, but 10 days after receiving the Award Letter seems ridiculous. I assumed it was a mistake, but after waiting on hold with your offices for over 90 minutes, I was told that I did need to return to your offices to go over Jack’s updated information (updated?). Then, you insisted that I bring my son to attend the meeting where I needed to once again describe his limitations in detail – THAT is cruel. Only made more cruel because we were forced to sit in a waiting room for 5 hours before having that uncomfortable conversation.

At the end of the review, the woman behind the glass (now I understand the need for the glass) said that we would hear within a few weeks if Jack still qualifies for his benefits. In her defense, she did preface this by handing me a tissue and saying, “I am sorry that I need to say this . . . ”

I’m so proud of where our family is ten years after ALD crashed into our lives. We are strong and thriving, but it’s days like this that make me want to crawl into a hole and scream.

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

Is that better? Should I say it just one more time?

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

No Love Here, Jess

P.S. I promise to write again tomorrow and share a bunch of good news and funny stories. We do have a lot to celebrate right now and that should be my focus.