How I feel after the news

I understand now. I get it. For the last year, I struggled to understand the reason for all my personal pain. But today it’s all clear. They were just growing pains….growing pains to get me to this place, right here, right now.
There is no better time or need for me to be clear and strong. And I am. And now when those days come and I don’t feel this way (and I know they will), I have such a better understanding of how to get through it.

There is a lot to be done for my family and for the DMD community in this time of need and I am ready to help. I have a better understanding of a bigger picture and how it all works together than I ever have and I’m so grateful for that part of it.

Things may get tough going forward. There are imminent changes in Anthony’s care and depending on specific outcomes, possible changes for many. If we only look at today and losing the hope of a cure, then things will seem unbearable. But if we see the whole picture unfolding in front of us, we may get ideas of how to help and pursue all possibilities. To stay clear and not get swept away by fear is so important right now for that fear is based on things that haven’t happened yet. If we can stay here in the moment, we can stay in the solution and be open for answers.

I could never have done that before and today I can say that I am so thankful for my state of mind. I understand that I am here to help my family, the cause and anyone else I can. I believe we will come together as a community and I really do believe that we can make a difference if we all work together. No one is in this alone…..that I am certain of.


We'll See...
There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit.
"Such bad luck," they said sympathetically.
"We'll see," the farmer replied.
The next morning the horse returned, bringing with it three other wild horses.
"How wonderful," the neighbors exclaimed.
"We'll see," replied the old man.
The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.
"We'll see," answered the farmer.
The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.
"We'll see" said the farmer.

Me Today?

Today I am a single mother of two amazing little boys: one miracle child with a life limiting disorder called Duchenne Muscular Dystrophy who also has Autism and another precocious little gift who is a sibling of a child with a disability and has unique needs of his own.

I am a woman who is sober and works diligently to maintain a spiritual connection on a daily basis in spite of my inclination to live otherwise. While I do my best to live in gratitude for what I have, I am also someone who can’t help wanting it all… peace of mind, joy, laughter, integrity, beautiful relationships and an opportunity to give back to the world something meaningful every day.

I am an advocate who has learned how to collaborate within systems, navigate laws and find the hardest reaching resources available…... at first for my own son, and later to help make others similar journeys a little less painful, complicated or lonely.

I am a person who is learning how to live one day at a time. I have to work to be accountable and honest with myself and others in all my affairs. I try my best to live in the solution, not the problem and am interested in searching out similarities while appreciating the differences in all who I meet.

I am a person with great hope and faith in my heart that tends to believe that disguised in all this rhetoric lays an incredible, delicious journey that is available to us all in spite of….. or maybe even because of, the challenges we face.

I pray often that in the end, my perseverance for clarity and love will outweigh my constant fallibility. And in the effort to make sense, or use of my unique challenges, I hope that while I pursue the resting place of divinity, I have the courage to share the treasure map with others……. much in the way those who came before, so graciously shared with me.

2010, One day at a Time

When I look back in 2009 or forward to 2010, I am most grateful for today. The changing of the guard of time reminds me that when I feel angry or sad, I know I am living in the past. And when I get anxious, I recognize I am living in a future that is not real yet. And since I can’t change the past and I have no idea what the future holds, I finally come clear in my understanding that right now is all there is. With that realization, any resentment from the past and the fears for the future suddenly dissipates. I am left with this moment and as I look around I realize I’m OK for right now.

I did not always have this ability…..not by a long stretch. I did not live in the now and I was definitely not ok. I was chasing what I believed to be the truth. And in regards to our struggle with DMD, the truth is……Anthony has been OK all along. He knew something I didn’t. I often smile at the irony of him watching me run around in a manic state while he just happily sat and played. It was me who needed to search for answers. It was me who needed the hope. And it is me who was losing the truth in the process. He was in the now.

For years after the diagnosis, I worked so hard. I was in such excruciating pain that I felt the only relief could come from action. Hope got me up and fear kept me moving. They were both such useful emotions which really worked for me. And because of that work, I was able to get Anthony a tremendous amount of resources and help. Hopefully in doing so, it did help make his life a little bit easier.

The problem came as I continued to move through the goals I had set. With each hurdle I passed, I expected relief. But the relief was only brief. It became a never ending quest to feel useful in a situation everyone else described as a powerless place to be. But I couldn’t accept powerless. I saw that as a choice that I would never make as a mother or as a person. I wasn’t helpless, I had the power to do a lot and so I did. I clutched to the hope that as each problem got solved along the way, not only would it make his future brighter, but perhaps I might personally find some relief from the pain of uselessness.

If only we could help him to talk, then the meltdowns would stop. If we could find someone to teach him the right way, he could learn. If only we found the right doctors and specialists, they would have the answers. If only we raised more money, we would have more access to those answers. If we met more people and went more places, we would find some undiscovered answer to it all that someone else had missed. If only we could keep him walking long enough….. we could buy time to find the cure.

Then what? Then we could forget the pain from the past and all be happy in the days to come. So we did it. We got him talking. We got him learning. We found him the best doctors and resources and therapies. And we got him on PTC124.

PTC124 was the end all be all of my personal DMD goals. In my mind, it was the miracle that would solve everything. There is no doubt it solved a lot. Finally getting the drug did bring miracles to our life, just not necessarily the ones I had been expecting.

PTC124 brought hope for our son’s future and an answer that works for today. The drug has given Anthony a fighting chance. He is now given the same chance as other children whose futures aren’t predetermined by the predicted course of Duchenne. He is now on an equal playing field because his decline is no longer a guarantee. His future is now unknown………….. just like everyone else’s.

The journey of the drug brought me my personal miracle too. It brought me the understanding that I had to find a way to live in the now or I was going to be in big trouble. Working so hard to get to place of unknown was a crushing blow to me. To finally arrive at what I believed to be an end only to find a new beginning of more uncertainty, shook me to my very core. This wasn’t the answer I had searched for. I was looking for solutions, not more questions.

But it has been in this time I have found some answers, very different answers than the ones I could imagine. It has been a time of great awakening. I awoke to miracle of the now. I have taken the proverbial advice of “all we have is now” into my heart and into our lives. I can finally share the secret Anthony held the key to all the while as he watched from the sidelines.

In this New Year, I will do my best to recognize that the past is gone and the future is uncertain for us all. The only thing real is today and I will not waste any more of it. Make no mistake, I will I still take action. I will still continue to strive to be useful and make a difference wherever I can. And I will continue to do the next right thing, which will hopefully make for a better tomorrow. However, it is with a new understanding, I will lay that groundwork for the future without the cost of the present. And hopefully, I can continue to share what I learned from my son and this crazy journey…. that there is no relief in exchanging today for tomorrow.