Eleven years old

Dear Anthony,

Eleven years ago today you entered this world and our lives would forever change. I should have known by the nature of your birth, you were here to show us a different way of doing things. You were two weeks late and fought the process every step of the way. Even from the beginning, your spirit was incredibly strong and you were definitely doing things your own way.

When you were three, the doctors told us you had Duchenne Muscular Dystrophy. They also told us you had Autism. They spent a lot of time proceeding to tell us about all the things you could not do, the things you would never do, and exactly what your life was going to look like. They painted a picture of your future intellectually as well as physically based on fears, limitations and other people’s history.

So far, not ONE prediction they made that day has been right. Your story was unwritten and had never been read before. They just didn’t understand. They just simply didn’t know any better. And ever since then, you have consistently challenged everyone you have ever met, especially those who love you the most. You have amazed us at every turn. We have stopped trying to predict anything when it comes to you.

Having the privilege of being your Mom has been truly extraordinary. You have taught me so much. I’ve always been the kind of person who had to have a plan. And I have definitely always been more comfortable when things went my way according to that plan. But right from the beginning, you made it clear that’s not the way it would go. The plan for you was going to be much larger than anything I could ever envision. When I look now at all the people you have touched and changed and how large your life really is, I am grateful it wasn’t my plan that was followed. I could have never imagined this journey. You have already contributed more to this world in eleven years than my little ideas could have ever done justice.

I must admit, I was really scared that I wouldn’t be up to the task. I couldn’t figure out for the longest time why I was the one chosen to be your Mom. I was such an unqualified candidate. But with each difficult decision that was made, you taught me to trust. You defined grace. You taught me that things are going to be they way they are going to be and I’m just here to support you on this wild ride. I get that now. I promise I will always love you exactly for who you are. I promise to live with open eyes and an open heart. When I feel fear, I promise to look at you, so full of hope and love that I will have no choice but to be filled with joy instead. I promise I’ll always go to bat for you when you can’t. On those days that are really tough, I’ll hold your hand and we’ll kick down that door to heaven together. And on all the other days in between, I promise to try to give back even half of what you have given to me.

Happy Birthday, buddy….. You’re a wonderful, smart, funny, brave eleven year old who I just couldn’t be more fortunate and blessed to call my son.

The Power of Forgiveness

Forgiving others who have deeply hurt me…. that’s a tough one to grapple with. I do basically believe that people do the best they can with where they are at. I also believe that when someone hurts someone, they usually don’t really understand the repercussions of the pain they have caused. Many times, I believe people are busy being centered and focused on themselves and their own perspectives and don’t necessarily even have the ability to see another’s perspective. If this is true, how could they really understand what they have done? We do this disability training where we show a picture to a room of teachers. Almost always half the room sees one image and half the room sees another in the same photo. And no matter what you do, you can't get people to see it differently than the image they first saw. Perception is a powerful thing.

It has occurred to me that carrying around resentments for me is a type of conceit. If I resent others that means I am saying I too should not have the right to be wrong. You have just as much right to make mistakes as I do. How can I judge your motives if I don’t even understand my own at times? Whatever you did or said, you most likely did the best you could at that given moment in time and if I am so critical I can’t forgive you, then what’s that say about my mistakes? How can I expect God or others to forgive me if I can’t forgive you?

When I’m hurt, I do my best to just look at my part of it and take responsibility - keeping my own side of the street clean. It always comes back to “serenity to accept the things I can’t change, power to change the things I can”. I can’t change you or make you see something differently but I can address my part in it. And almost always, if I’m honest, I have a part in it somewhere. I need to clean that up before I can even begin to judge you and your part. That for me feels incredibly empowering and reminds me I have a choice to be brave. I’m not the victim anymore. There's so much freedom in that.

The times I really struggle and can’t forgive or see my part it’s usually because I can’t let go of how I thought things should go. If that’s the case, then I’m not trusting that something bigger runs the show. I'm assuming I know what's best for everyone involved. If I’m stewing over the fact it didn’t go my way and I’m mad at you, then I must still think I’m in charge of the bigger picture. That’s an ugly place to be. And when I’m on that path, it feels like life just continues to hold me down. I feel oppressed. More and more, it’s become just a useless place to be.

When I can forgive….. when I can let go of how I thought it should go or what you should have done, I get my freedom back. I feel I too am forgiven for all my transgressions and the heaviness is lifted. I suddenly have the love I need in my heart to be the person I was intended to be. I have the lightness and energy I need to do what I was called to do for others. Sometimes I think we just need to crack ourselves wide open and see that we all look the same on the inside. Then we can have the peace in our souls we need to carry on.

And on those days where all the aforementioned reasoning isn’t working and I’m hanging on too tight, stuck in fear, I remember the single thing that motivates me to be brave..... my boys. How do I teach them to forgive others and themselves if I can’t? The bottom line is that I can preach all I want about lessons they should learn and all the rules they should follow but how they really understand and take a lesson into thier heart ...… is by watching me. The lessons that will stick with them forever are the ones they gain from watching examples. My life needs to be their living lesson. And that’s not something I can fake. They have to see the real deal being lived out…everyday. So I continue to try because I want them to know that same gift, the gift of freedom that comes from the power of forgiveness.

Denial or Survival?

When running up a hill, there are several ways to do it. One choice is to begrudgingly trot one laborious foot at a time while focusing on the exhaustion and pain which inevitably grows larger with each step. Another way to do it is to ignore the pain, dig your heels in and power through it, usually resulting in an injury. Lastly, you can accept the pain, welcome it along for the ride and let it run with you while you steadily take on the hill. Most of my life, I practiced ignoring pain and waking to injury. And more times than I care to admit, I was really laboring through it, focusing on the pain. Today……… today I strive for the latter.

I have been a long time subscriber of the most powerful tool I could find, denial. It has been brought to my attention by my loved ones as well as the community I serve, that my approach is sometimes tough to take. My tunnel vision and inflexibility has been regarded as self centeredness and egotism and my passion and hope was deemed denial. Well, I’m here to say….it was. It was self-centeredness, egotism and definitely denial. Like a custom fit suit of armor, I needed to put it on every morning before my feet hit the floor. I couldn’t take the truth. The way I’m wired, when I do allow myself to feel, I feel so intensely that honestly….. I didn’t think I could handle it. I had no trust that if I opened up, I would survive it. But that didn’t mean I didn’t hear or see your pain. I did. And it didn’t mean I wasn’t awake at night and crying in the dark for you, I was. I just couldn’t get through my day that way.

The day the doctors told us to take our son home and love him because there was nothing we could do is the same day I made a secret pact to team up with denial. And looking back, I see why I chose that partner. It turned out there was indeed a lot we could do and had I not embraced my new friend, I may not have been able to move. But like a bad relationship, denial spread like a disease throughout every part of my world until eventually none of my life was authentic. For those close to me, denial and self-centeredness caused some significant pain. For those in my community, my approach was tough to take at times. I’m not for everyone. I get that. But that’s where I was at. That’s how I did it. That’s how I dug my heels in and got up the hills. And trotting through each step begrudgingly focusing on the pain, I did that too. I embraced martyrdom arrogantly thinking God gave me more pain than others. That was egotism.

They say “only the cracked shall let the light in”. Well, I’ve been cracked. And I do see light. I went ahead and felt all the feelings I thought would break me and I let the pain run alongside me for while. Today I run the hills knowing this is just life and hills don’t last forever. I don’t ignore it all anymore. It’s there…no way around it. And I see others struggles more clearly now too. I don’t focus on and harvest the pain; I just let it tag along while I move ahead. And I don’t need to hide in denial and self-centeredness anymore. It’s still not my first inclination to take no for an answer, but I understand now that there’s a fine line between determination and hurtful denial. It’s a delicate balance as to whether your denial protects you and is needed for survival or when it’s just an excuse to be self-centered. I understand now that my experience and resources can help others, but I’m only helpful on the days I can let in the light. Staying open and in the truth takes diligent practice for me but I am clear now……I think it may be the only graceful way to get up the hills.

Being comfortable with change

Change is hard. I think for several reasons, many of us avoid it. I do recognize that when things get uncomfortable it’s a sign of a change coming on. I believe that if we never got uncomfortable, we would never strive to be better or reach for more. Some of us need to have different levels of discomfort in order to prompt change. For those of us who are stubborn, sometimes it has to get downright ugly.

I also believe there is a part of us that is afraid of the possibilities, afraid of the uncertainty and work it would require to be our personal best. For me, it was always easier to just do what I had always known rather than be honest about my true capabilities and purpose in this world. And it was incredibly hard for me to leave situations that were no longer encouraging me to be my best. But finally, one day, it got to a point where living in the shadow of disappointment due to mediocrity and complacency was far more painful than the challenges I would face when I decided to live my truth. One day, I got so uncomfortable I took that leap of faith.

Today I have one year of continuous sobriety. I can honestly say as far as personal change, this has been the hardest thing I’ve ever done. It’s not the abstinence that’s been hard…………It was all the truth that came with it.

But that’s the thing….once you see the truth, you can’t ever get away with anything less again.

The Story of the dragonfly

Once upon a time, in the muddy little pond under some lily pads, lived a community of water beetles. The water beetles lived a simple and comfortable life in the pond with few disturbances and interruptions. Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They figured when this happened their friend must die since they were gone forever.

One day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He promised he would come back and tell his friends what he had found at the top. When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired. The sun felt so amazingly warm, that he decided he must take a nap. Unbeknownst to him, as he slept, his body changed completely.

When he woke up, he had turned into a beautiful blue tailed dragonfly with broad wings and a slender body designed for flying. So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed. Suddenly, he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended. But, his new body would not go down into the water. He could not get back to tell his friends the good news.

Then he understood…. their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!

Bloom where you're planted

Cultivate. This is new for me. I never used to be able to do this. After a year of waking up, I have come to the realization that I could have never bloomed where I was planted because I never wanted to weed. Instant gratification, relief and hasty gain…… that was more my style. I would always pick up and go (in one way or another) when things got uncomfortable. But there was a flaw in the “fresh start” approach…. I kept taking me with me, wherever I went.

I used to pick a goal of something I thought I needed or wanted and then worked backwards to set up the steps to get there. This approach seemed very effective most of the time….assuming the ideas of what I needed were right. Looking back….maybe not so much. I did always get what I wanted, but unfortunately what I wanted wasn’t necessarily what was best. Now I try to subscribe more to the process. Instead of looking at the end goal, I just focus on the very next right thing in front of me and try to have no attachment to the outcome or fear of where life will lead me. At first this was very difficult to practice but now it’s getting easier and it’s opened up a whole new appreciation of where I am versus where I need to go. I was so stuck in my preconceived ideas; I missed so many interesting things along the way.

Today from where I stand, I see only the beauty of what I have, not what’s missing. And the world looks completely different. When my perspective broadened and opened up, the possibilities of expanding where I am at seem endless. It’s amazing that the same exact garden where I used to only see limitations and weeds, now has rich soil that’s ready to go.

Getting here has been an interesting process. I spent years searching everywhere for anything that would bring peacefulness and comfort. I searched to no avail. My manic seeking produced nothing but more emptiness time and time again. Little did I know, all I had to do was sit through the uncomfortable feelings and keep doing the next right thing rather than run from it all looking for difference. It was about taking it head on and bravely walking through it.

Last week, while I was participating in the Pat Tillman run, I was thinking about the idea of riding out the suffering rather than escaping or looking for relief. When you run races, whether they are 26.2 miles or a 5k most everyone hits some sort of “wall” and I find it to be a very appropriate metaphor for the walls we hit when we are traveling through some sort of emotional pain. I couldn’t help drawing the similarities between those walls and how they related to letting go of the attachment to outcome.

When you hit the dreaded “wall”, things get incredibly uncomfortable and you are suddenly filled with self doubt, anxiety and fear. Your preconceived ideas of how things should be kick in and you are suddenly in pain. I truly believe at this point there is no choice but to let go of your expectations, come back to the now and run right through it. You have to just get comfortable with being uncomfortable and have faith that it will pass.

If you stop or go a different direction at that point, you will have to start over or you will never make it at all. And that same wall will be there next time, and the next and the next. You can try a bunch of different approaches or different days but until you just get through it, it will always be there ready to stop you again at the same place. I am beginning to understand that every time I am able to stay put and detach, I am so much stronger and my perspective grows more expansive and flexible for the next challenging time when I experience suffering.

I finally understand “bloom where you’re planted”. I understand that going away literally or figuratively only means I have to start over and I am never able to get through that place that’s stopping me. I don’t want that anymore. I understand there is nowhere else to go. It’s here. This is my life.

I will not live a thousand years. I can’t repeat my life. It's best if I don’t compare my life to another. When I look around at where I’m at right now, I find that peace I so desperately searched for all those years. And now when I’m uncomfortable, I understand it’s simply just another growing pain. And that’s just not enough reason anymore to uproot and start over. Not if I ever want to get to the other side of that wall. Not if I want to ever bloom.

"Autobiography in Five Chapters" from the Tibetan book of Living and Dying.

1) I walk down the street. There is a deep hole in the sidewalk. I fall in. I am lost....I am hopeless. It isn't my fault. It takes forever to find a way out.

2) I walk down the same street. There is a deep hole in the sidewalk. I pretend I don't see it. I fall in again. I can't believe I'm in the same place. But it isn't my fault. It still takes a long time to get out.

3) I walk down the same street. There is a deep hole in the sidewalk. I see it is there. I still fall in....it's a habit. My eyes are open. I know where I am. It is my fault. I get out immediately.

4) I walk down the same street. There is a deep hole in the sidewalk. I walk around it.

5) I walk down another street.




This passage really spoke to me this morning. I feel it describes the personal journey I have been on for the last year. Difficult things keep happening for sure, but I see them so differently now that it brings about a better experience. It takes practice, but I'm so grateful for the ability to be flexible in my thoughts. For so many years, I lived in either chaos or rigidity. It was no way to live. This passage was a great reminder for me today..... so I thought I would share!

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.