Hi.

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. 

My Mom's Results

My mom has Huntington's Disease. 

At this point in time, there is no cure. 

We are going to fight as hard as we can, but, unless there is a miracle, it's a losing battle. Slowly I will lose my mom completely. 

As much as I thought I prepared myself for hearing the results, I suppose nothing can prepare you for hearing it out loud for the first time. It happened very quickly. My mom and I held hands in the waiting room and I told her we were pulling the bandaid off. She was in good spirits. Scared to death, but smiling. We talked about when I went skydiving and how scary it was when the airplane doors opened and the wind hit you in the face and you saw the tiny roads down below. When the doctors called us back, I felt the tears already falling down my face. I couldn't breathe. I knew exactly what was happening. 

As her doctor opened the envelope that would tell us the results, my mom gave my hand a little squeeze. I held my breath. The last thing I heard was the doctor say, "well, it isn't what we had hoped for." And I looked at my mom who just heard the news that she has the same disease that took away her own mother and her own brother and she didn't cry. Honestly, I'm sure she was holding it in for me. She and the doctors continued to talk and explain the CAG numbers and next steps and my mom never cried in that room. I can't remember anything they said. 

I started sobbing as soon as the words came out of the doctor's mouth. I just lost myself in a way you only lose yourself when something like this happens. You can't breathe and the fact that you are in a room with two complete strangers just doesn't matter anymore. It's a little awkward when I play the memory back over and over in my head. The doctors just continue talking because they deal with this kind of thing every day. And they say all the right things. And then I felt like an idiot because I was the one crying when my mom was being so strong. 

After we talked about all we could talk about, we left the office. When we walked out, there was another family in the waiting room probably going through the same thing. They searched my face for any sign of promise, but I was so numb. I have no idea what I looked like. I felt bad for them for having to see us walk out. We called my brother who was just about to go into a dentist appointment. Worst timing ever. Can you imagine hearing that news and then having someone clean your teeth?

After the news we sat in the car for awhile in the parking lot and talked about joining support groups and participating in research studies and we both felt better. We talked about how 15 or 20 years ago, AIDS and certain cancers were death sentences and now people survive every day. We were in a positive place. 

The rest of the day we went to the mall and to a movie and then met up with my husband and took the dog to the beach to let her run around. I tried to stop talking about the diagnosis and tried to have as nice as a day as we could. The weather was beautiful and everyone in the little beach town was so happy. I wanted to shake them as we walked by and tell them what had just happened to us. 

At 7pm we were all was so emotionally exhausted that my husband and I went back to our hotel. The whole day was such a blur and I just kept replaying the doctor's office over and over again in my head. I took a long, hot shower and stood there there sobbing those deep, broken sobs. My tears mixed with the hot water and I felt like I was never going to be whole again.


Sinking In

Waiting..