January 11 - Day 132
Drug Trial Completion

Eleven is my lucky number and January 11th was definitely a good day. There were some really positive things that happened during the final day and I'm really happy and relieved to have completed it.

This visit was also a one day visit. I drove to Phoenix on Sunday and spent the afternoon visiting with a friend and holding her new baby. There's nothing in this world much better than a fresh-from-Heaven-baby. Thanks Whit!  I went to dinner with one of my closest friends, Suzanne, who always makes me laugh. We spent 2 1/2 hours catching up and it did my soul a lot of good. I spent the night at the home of the world's best parents. I woke up at 5, got ready, went to Salt Lake, did all the testing, got back on the plane, and drove back to Tucson.

The road between Phoenix and Tucson is a little desolate and there are not too many cars in the evening. The dark, quiet drive gave me quite a bit of time for retrospection. I found myself crying, due in part to sheer exhaustion and in part to thinking about this study and what it means to my family.

I thought about that saying, "I can do hard things."

This statement means something different to everyone. I see posts on Facebook about this all the time. Sometimes it drives me crazy when someone gets a lousy haircut or their kids get shots and they use this statement as an explanation of their feelings. However, that is neither here nor there and it doesn't make their hard things less legitimate than my hard things. Regardless, I was thinking only in terms of the study, which is MY hard thing most recently.

Then, however, my thoughts drifted to hard things I do daily. I change a 10-year-old's diaper every day, I lift that 4 foot, 6 inch boy several times every day (off of his bean bag, into his chair at the table, out of the bathtub, etc.), I help all 80 pounds of him in and out of the car several times a day, I take him to lots of appointments for therapy and to the doctor every week. During those appointments I watch him struggle. When I see him trying so hard to say a word or complete a task and he is frustrated, my heart breaks a little, but I keep smiling and encouraging him. I decipher what his body language, sounds and, sometimes, tears mean every day because he can't tell me. I put needles in him every week. Nothing comes easy to Aulton. Nothing. He needs help getting dressed, eating and turning on the TV. BUT, he is happy despite the struggles. He is the one who uses the "hug" button on his augmentative communication device more than any other button. His love is unwavering, unconditional and the purest I have ever encountered. His love for me is fierce and it is strong.

My love for him is fierce and it is strong. I know mothers usually feel this way for their children, but hopefully they see a lot of triumph that makes hard days easier. I see Lyla doing things that come so easily. She is good at almost everything. I see things come naturally with Elodie. I love to hear the emerging language and watch as she discovers and embraces everything in her life.  I rejoice in every success my children experience. Aulton's are so different. He works so hard for everything. Everything.

I'm not using these experiences to make myself feel proud or even to make anyone feel bad for me. I want to use them to help others understand what a drug could do for Aulton's life.

I want him to struggle less. I want to see fewer doctors and I want him to gain more independence. You can bet the current amount of the Powerball that if there is something I can do to help him, I'm going to do it. And, I would make that choice every. single. time.

This drug is the solution! This trial is my opportunity to help. It is essentially the key to making Aulton's life easier, to watch him struggle less.

When Aulton was initially diagnosed with Myotonic Dystrophy, I heard a lot of people throwing around the word "bittersweet." They said, it was good that I had the diagnosis because I could anticipate what lie ahead, albeit a little sad because the disease was confirmed.

Bittersweet is not a word I chose to use in that situation. I tried, but I was 25. I was shattered and I needed to grieve in my own way on my own terms. It was bitter and I was, for a time, too.

Aulton was almost a year old when he was diagnosed. I lost the boy I thought I was going to have. People, even doctors, had been telling me he was going to catch up, his delivery was rough, maybe his due date had been wrong. I'm not sure if my heart always guessed the truth, but I clung onto those thoughts that things would be normal and I didn't let go until that phone call.  Of course, I went through the natural grieving process, which is a topic for another post, but it was really, really difficult. I'm eternally grateful for the amazing people who stuck with me during that time and they definitely know who they are. Although they are few in number, they mean the world to me.

I rarely use the word bittersweet because of this situation. When someone uses this word,  I always thing that whatever a person is referring to has equal parts of bitter and sweet.

Fortunately, I don't consider myself bitter anymore and Aulton's life is mostly filled with sweet. The kid is practically made of sugar. The trial, though, is something I would categorize as bittersweet. I'm equally happy and sad it is over and is progressing. I am so incredibly grateful that I could do something, but am also sad I can't do more.

Bitter Parts:

Me and Susan

• Moving. Moving and participating in a drug trial do not mix. 
• Pneumonia. Pneumonia is tough. I did two 24 hours blood draws. It is tough. Dealing with both pneumonia and giving bags of blood simultaneously is difficult.
• Planes (and the people on them). On Monday, I sat next to a man who ate sunflower seeds and spit the shells into a plastic cup for an hour and 11 minutes. Sunflower seeds are not a plane snack. Early in the study, I sat next to two "nice" guys, who eventually offered to drive me to my hotel. I'm not an idiot. 
• Bruises. I've still got four on my mid-section, one large and one small on each thigh and bruises on my arms. I showed the ones on my arms to my friend, who said it looked like Mike was gripping my arms and shaking me. Lovely. They will look even lovelier when swimsuit and short sleeve shirt weather arrive.
• Fatigue.  I intentionally chose travel times that would require me to be gone from my family as little as possible, while still meeting the time constraints of the study. In the beginning, this meant I usually arrived in Salt Lake around 11 pm, so that I could be up early and make it to the hospital on time, on Monday. The last three visits, I have done all my traveling on Monday. It's tiring.
• The Study People. I have a love/hate relationship with the people who hurt me. The nurses, Dr. Nick Johnson, the PTs and the study coordinator, Susan, who doesn't hurt me, but makes me fill out lots and lots of papers
  
  

  

  Incredible Nurses: Kathleen, Michelle, and Tami

  
  

The sweet parts:

• Moving. The move allowed my husband to stay home with our children.
• Pneumonia. Yeah, that one is still really hard, but I was at a hospital round the clock for most of my visit. There's not really a better place to be when you have a severe, active case of pneumonia.
• Planes (and the people on them). Sometimes I met really great, kind people. Like the young guy who was traveling to San Francisco for a conference on autoimmune diseases. When he pulled out his bag of cough drops and told me he was sick, he didn't bat an eye when I put on a face mask and told him I have Lupus. I also met a sweet woman who had just divorced her husband of 12 years. I just listened.
• Bruises. Proof that I have something that could cure Myotonic Dystrophy running through my body.
• Fatigue. Like I mentioned, I missed as little of my family as possible. I still volunteered at school. I still did parent teacher conferences. I took Aulton to therapy and the doctor. I played with my kids. I read to them. I still moved my family to Tucson (and did everything that goes along with that). I still celebrated the holiday with family. I didn't miss too much. 
• The Study People. They hurt me because they care about this disease and want the trial to be successful.

Bittersweet.