A few weeks ago, I accomplished something I never hoped to. Especially at the age of 30.
I completed Chad’s Social Security paperwork. (Insert audience applause and cue “Eye of the Tiger”)
Not only is it complete, but I actually submitted it, folks!
I had to print eleven copies of medical release forms — because the SSA (Social Security Administration) wants to send them to each doctor, clinic or hospital that has treated Chad in the last two years. Fo’real. Only eleven? It is actually more than that, but I cannot possibly be expected to remember the attending physicians for each ER trip. Or can I? Oh, well. Someone will fill the SSA in, I’m sure.
The next morning, after I dropped the girls off at school, I made my way to SSA local field office.
It was quite an eye-opening experience. Lots of different folks. From lots of different walks of life. All crammed in one very small room.
Thankfully, I made it there before 10am (note to self: NEVER arrive at the SSA after 10am. Unless you like to pretend you’re a sardine packed in a can full of lots of other sardines.) and only had to wait about twenty minutes.
I’ll admit it. It was hard. Sitting in a room full of people who are all there for different reasons….but I knew what my reason was. I caught myself getting teary-eyed a few times, but I reminded myself that this is best for Chad. This is best for the girls. This is best for all of us, as a family. Moving forward is the only way to move.
A woman called “Number eighteen to desk two!” over the speaker, and I made my way there. I attempted to explain the situation in as few sentences as possible. (It’s hard to do!) The clerk then had to get her manager….who then came to ask more questions. But he was polite, and assured me that he was going to submit my paperwork to the main office by that afternoon.
He also told me, given Chad’s ultimate prognosis, that we should expect to hear a response (approval or denial) within three months. I was relieved; that’s hardly the amount of time I was warned it could take. He proceeded to tell me that if we were denied, to contact him directly and he would handle our appeal.
The word appeal makes my stomach ulcers revolt – so I am not thinking about it for now.
We had to sell Chad’s truck this week. It was a bittersweet day.
It’s not something either of us wanted to do, but it’s painfully obvious that Chad’s driving days are over. His working days are over.
So, we attempt to move forward.
The truck sold really quickly, and I was beyond relieved. I think it put Chad at ease when he was able to meet the new owner. He just wanted to know that someone was going to take care of his truck, and I think it helped immensely that the family was a lot like us.
We were looking forward to Chad’s next appointment in February, complete with MRI and visits with a hematologist and neurosurgeon. We were a little disappointed when the nurse called to inform us the appointment has to be moved to March. That’s a whole month later. I am beyond frustrated. But I also realize not much will be accomplished at this appointment; we’ll listen. And we’ll let them know we are DONE with treatments, surgeries, drugs. We choose quality. And we choose it now.
Chad is losing his memory at a steady rate. There are days where he remembers minute details, and other days where I have to remind him five times that he already took a shower. It’s frustrating for him. It’s frustrating for me.
But more than anything, it’s sad.
We’re hanging in there.
We’re hanging on.
And we’re frustrated.
But we’re still here as a family, and that’s all I can ask for right now.
Now, tomorrow? Tomorrow, I think I may ask for a one-way ticket to Tahiti.
Oh, Skye. I am so sorry for what you are going through especially at such a young age. Be assured of my prayers and concern. In the midst of all this chaos and despair may you still find moments of peace and joy with your family.
Hi Skye–Oh, gosh, I think those moments like you had at the SSA office can be such lonely moments. I’m so glad you brought us along, via your post. It may seem like so many life choices have been robbed of you and Chad, but you choose daily to treasure your family’s love. And, you choose to treasure Chad.
I’m always so glad to hear from you. I hope today is a day of beauty for you.