Life has a way of beating you down sometimes. I think all of you could feel the weight of what I was feeling last week in my blog post. I was feeling pretty beaten up or down I guess is better way of saying it. The way I was feeling was draining me and the last thing I wanted to do was wake up on Friday at 3:45 am to catch a flight to Dallas to attend an advisory council meeting for PTC Therapeutics and return home around midnight on Saturday.
PTC Therapeutics is the company that makes the trial drug Ataluren/Translarna that my sons take as part of a clinical drug trial. PTC invited a small group of parents to a meeting to better understand the impact Duchenne and the trial drug have on the lives of children, young adults, and families and how they could help.
As I mentioned, I was wanting to stay home. Thursday of last week, it felt like Duchenne broke me a little and the last thing I wanted to do was leave my home and my family. My home is my safe haven and that is where I felt like a needed to be. But I had committed to the meeting I was going.
Once I made it to airport and survived the early morning drive in the dark and cold, I felt better about going. It had been years since I had flown without kids and that alone made it a more relaxing experience. When I arrived in Dallas a car was waiting to take me to the hotel. I felt spoiled when the driver had a little sign with my name on it, carried my bag for me, and had little water bottles and a newspaper waiting in the back seat for me.
I know it may not seem like much, but it meant a lot to me and as I look back at it now, a reminder that it is necessary that I quit sacrificing all of me for the ones I love. Part of the reason I have felt so defeated lately is because I am running on fumes. It took 6 hours away from home and I was able to figure that out; already the trip was helping.
I felt pampered the rest of the trip. I had a quiet lunch alone on a balcony, I took a nap before my meeting, and was able to take a long shower a long time getting ready. A dinner had been planned for those attending the meeting. Nobody spilled food on me, I didn’t have to remind anyone about table manners, the waiters never let our wine glasses empty, and I enjoyed great conversation. The next morning the group had a beautiful breakfast and as we worked through the agenda of our meeting, we discussed important things in our lives and the lives of our children and we were productive.
We were treated very well; but the best part was being with people who live a version of my life when they are home. It was very good for me to be with the parents I was with; because we all share something. It is something unspoken, but very well known. It is something that is felt, not anything that is said or written. It is a safe place to be happy, to grieve, to laugh and to cry. If there is a silver lining to Duchenne and I believe there to be more than one, it is the community of parents, advocates, scientists, and doctors that I became part of at diagnosis.
I end this post with a grateful heart for those parents living and thriving and fighting for their children in spite of the challenges. They make me better.