This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

Steps Forward... And Back

I think the lesson that I've been learning as of late is that I can't let my guard down. I can't relax. This isn't a disease with the luxury of going into remission. It will only continue to progress. My mom will constantly be in crisis mode. Yes, there are moments when she seems calm and happy. BUT the mistake that I've made is taking that calm to mean that she is "better". It's the moments when I let my guard down when all hell breaks lose. Truly it's the calm before the storm. 

So the steps forward in the last few weeks have been huge. I went with my mom to her first doctor's appointment. The appointment itself lasted almost 3 hours and was filled with cognitive and balance tests. Most of them were fun word puzzles and brain teasers. She felt really positive and was very receptive to going back for the larger, more intensive visit. 

At the same time she was doing her tests, I was in a room down the hall doing the same exact tests. I didn't think about myself until I was sitting in that office with her. Initially, I volunteered to do to the tests to make my mom feel better. When I was little and got my ears pierced, my mom got her ears pierced right before me to show me it wouldn't hurt. I was trying to return the favor. 

Even though initially I was doing the tests just for her, I can't help but wonder how I did in comparison to someone who doesn't have the gene. Although my onset is most likely decades away, are there little symptoms that are sneaking in now? Would I have done better on the tests last year? Or the year before that? Those tests convinced me even further that I want to be involved with as much research as possible. I need to understand Huntington's. And I want to make sure that I have a relationship with the medical team. I need to be confident that, when the day comes, my doctors will see the smallest of symptoms even if I'm not able to. 

In the same week, we went to our first fertility appointment. All went smoothly and my doctor was confident that I am a healthy twenty something with lots of eggs and, most likely, we will have no problems getting pregnant through IVF. Of course, there are no guarantees but there were also no red flags. Now the wait begins for the genetic testing center to design a probe to test our embryos. The probe will be designed specifically for us and our DNA. The process will take 3-4 months and then we will be ready to start the IVF cycle. 

I also went to my first committee meeting for the annual 5K walk. Everyone was very nice and welcoming. The shocking thing is that I was the only HD gene positive person there. I assumed there would be others. The other members of the committee had family members with the disease or were caregivers. I feel good about doing something to help. It's a way of helping to raise money and awareness without facing the scary support groups.  I don't think I'm ready for that. At least not yet. 

And now for the steps back...

The hysterical calls and emails from my mom come in waves. She will cry so hard that she can't breathe. And then the next day she will act like nothing happened. Our latest fiasco is her unpaid TWELVE tickets for not paying her registration. TWELVE. She still hasn't given me a straight answer about where she would put the tickets or why she didn't tell me about them. In addition to the twelve tickets, her car was impounded. And, of course, she doesn't have the money to pay to get it out. Instead of paying a simple registration fee, we are shelling out almost two grand. 

I don't have the words.

As I'm writing this, I'm getting status calls from her as she takes the bus to the DMV, pays her registration and then hopefully makes it to the impound lot to get her car back. I'm not working today, but I will be tomorrow. What if this happened next week? I wouldn't have the time to talk her through each step.  Honestly, it scares the shit out of me. I don't know if I'll ever get back to "normal". 

But from all of this, my mom has come to terms with the idea of selling her car. I think the suggestions that I've made in the last few months have finally sunk in. Maybe she realizes that it's a responsibility that she can't handle. And maybe now it's time for her to practice what she preaches by living an environmentally friendly lifestyle. I don't want to get to the point where she injures herself or someone else because she's incapable of driving. S and I are toying with the idea of driving down to her this weekend to sell it -- just to get it over with and not drag this out any further. 

After this car drama is over, I need to have the difficult conversation with her about getting power of attorney for healthcare and finances. I need to be able to access her bank account so I can monitor her bills. If the car is gone, her bills will be minimal and easy for me to take care of.  She also wants to move closer to me. It will be easier for everyone if she's only an hour away instead of three hours. After the moving and bills are settled, she can focus solely on her health and happiness. That's really all I can ask for. 

A Work in Progress

My First 1/2 Marathon!