ME

I am ME….just the way I am. All of it: the good, bad and ugly. Seems like I’m stating the obvious, right? But at some point, I actually need to embrace this idea. Although I am constantly evolving and growing, from time to time, I need to remind myself that self-acceptance is a vital companion in my pursuit of happiness. I fantasize today about what life would be like if I had freedom of self-loathing or self-imposed punishment. Perhaps even freedom from the habitual need to apologize for who I am, as if being ME might somehow inconvenience you. I vacillate between setting boundaries, being assertive in getting my needs met, and being sensitive to others perspectives. For most of my life, it has been such a struggle to balance on this extremely tight rope.

I was raised to be accommodating. Manners were of upmost value to the point of always putting your needs behind the benefit of the group. In order to get my needs met, I felt I had to rebel and fight to retain some control which of course, always created more resistance around me. Somehow the message I got was in order to have acceptance and love, I would need to comply. So I tried and when I couldn’t anymore, I rebelled leaving a wake of destruction. And so this exhausting cycle continued.

Lately, I have experienced an opening of Johari’s window and gained a bit of opportunity to see myself as others do. With this awareness came great realizations about how there is actually ways to get my needs met without being a bully. I think I was caught in this cycle for many years, I wasn’t even sure what I needed or who I actually was. In the past, I would inadvertently make the other party feel guilty or wrong so I would I somehow deep down be able to justify deserving what I was asking for. I had all kinds of tricks all based on the fact that perhaps I didn’t deserve it …just because I was ME and I was worthy. And since I’ve always said having DMD in your life is like throwing miracle-grow on your already existing character defects, I can admit adding the guilt I carry for DMD, propelled this issue to a new level. Looking back, I see I have been on a mission for a long time to justify my existence. I also see how many of my actions and decisions have been indeed driven by this force.

So, I’m finally starting to understand there is no shame in asking for what I need. I can just be me and stop apologizing for it. I can make peace with people in my life without overcompensating to the point of feeling the part of the occasional doormat. Now, I understand wellness lies somewhere in between. I can simply say no to things I don’t want to do, or ask for what I need without causing a tsunami to do it. I can simply, inexplicably be me, without qualifying my every wish. And I can do this with no guilt because being ME does, in fact, include looking out for others, being sensitive and giving myself freely.

When I am connected to who I really am and what I need, I can give freely without losing anything or compromising my own integrity. There is a way to do both. I JUST never knew.

Things I’ve learned lately…

• I know much less than I thought I did

• I can handle a lot more than I think I can

• The more I act like a martyr or victim, the more my son feels like he’s a burden

• I need to teach my community how to support me and my family. They want to, they just don’t know how

• I can’t do it alone and I cheat my boys and friends when I try

• Fair doesn’t mean everyone should get the same, it means everyone deserves to get what they need. Everyone doesn’t need the same thing

• Life can change in just minutes with new information

• The more I beat myself up, the worse I perform

• I don’t have to do more than my best

• What I focus on expands- good or bad

• When I play to my strengths, I am more successful

• Everyone has a story

• We ALL have special needs

• “Fake it till you make it” actually works

• It could always be better, but it could always be worse

• The more I need it to go my way, the less it does

• I’ve spent a lot of time worrying about things I now can’t even recall

• Authentically connecting with others means so much more than accomplishments

• Sometimes when I thought things were ending, they weren’t. They were only changing

True Love?

I remember pleading with God once asking why he couldn’t just send me a man that would love me unconditionally. I remember hearing the answer as clear as day, “I did…. I sent you two”. That’s right he did…my boys. It was then that I started to question what true love really was. Was it just limited to the romantic vision I had conjured up and believed most of my life, or was it way bigger? Was it even possible once we are gown ups to experience unconditional love the way a child does? Isn’t that an example of true love? Maybe we need to be that trusting to see it. I don’t know any of these answers but I do know this: you are either in fear or you are in love but you can’t be in both places at the same time…or should I say, I can’t. And if fear is permeating your life, it’s hard to imagine even having a shot at true love….whatever that may be.

I grew up thinking true love should be a combination of perfect intellectual foreplay and rousing companionship. I thought that if this “soul mate” of mine and I were completely in sync, we could virtually breathe one another in. I also somehow arrived at the notion that true love meant my beautiful one was supposed to love me unconditionally for who I was ….all of me. However, I never once acknowledged that I would be doing the same for them. In fact, looking back, I had very rigid views of the box they needed to neatly fit into. And in order to escape my constant disappointment, they needed to adhere to the version of them I had created. And I had no problem listing the criteria for them as if they were filling out a job application. So it’s no surprise that’s how it often ended up feeling, like a job.

These days, after surviving half a lifetime of both excruciatingly painful hanging on to one leg as they leave love, as well as deliciously wonderful I can climb any mountain love, I have safely arrived at a new point in my ability to define. Now, please note, this comes from a single gal. I have yet to learn how to gracefully survive in a committed romantic relationship. And in retrospect, my search for love looked more like a long determined trek, chasing what I believed to be utopia, only to find a mirage disappearing as I arrived. But after being able to surrender my outdated version of romantic love, I believe I am a lot closer to my truth than I used to be.

Today, for me, true love means loving someone for who they are, not for their ability to fill my agenda. It means wishing someone the most happiness they can find, even if that doesn’t incorporate me in the way I had envisioned (or at all for that matter). I believe true love includes listening to the other person with an open heart. Maybe even listening to them from their experience, not my own. Because even when I believe I’m listening, but I’m spending the whole time trying to tie what they are saying to my own experiences, I still do not hear them. I think to really know someone, I must be able to hear them from where they are speaking from without me all tied up in it. I believe only then can I see them for who they really are. And If I try to love them without really seeing or hearing them authentically, then I am only honoring the parts that appeal to me or that I have created. In the past, that’s how I did it. Inevitably, I was always caught off guard when that person turned out to be someone different than I had so beautifully painted them out to be in my mind; which ultimately led to punishing them for letting me down.

They say when a heart breaks; it grows back stronger….and perhaps, if you let it, even bigger. It sure seems to have worked that way for me. My ability to love is constantly evolving. I do seem to be getting better at it. I have come a long ways in understanding expectations and how dangerous they can be. I understand how perception works now and I am flexible in learning from others rather than being stuck in the rigidity of how things “should” look. It used to be about the search to find someone that fit the secret list I had hid under my pillow. Now I understand, most of the people that come into my life are just a reflection of me and where I’m at. So now, my relationships and interactions have become more about the expedition of truth, a discovery of my own light and love, and the attempt to steer clear of fear.

Looking back, I think to date the most selfless and true love I have ever really experienced was when I loved someone enough to let them go. In doing so, I was able to honor what they needed and where they were at. I remind myself today that real love isn’t holding on with an iron grip. I believe when I am stuck in my self –centered thoughts, all I am able to see is what I could or should get from someone else. I know now that is just being in fear. It’s a way of grappling to hold on to what I believe to have been robbed of throughout my life. Because I carried a backpack of pain for so long, I unconsciously approached love from a place of entitlement, always searching for compensation.

But perhaps I had it backwards for so long. Maybe when you challenge yourself to step off that edge, stop coveting love, and find it in yourself to give it all away, that’s when there’s change. It’s changing for me, right before my eyes with each time I am able to bravely try a new way.

Today, I practice loving people the way they need to be loved, not the way I need to love them. I try to love them for exactly who they are, not who I prefer them to be. And as I feel myself open up and freely give, I watch it all flood right back as if there’s no end to the source. And somehow in that, I am experiencing more of what I believe to be, true love…. every day.

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!