Just Breathe.

I got my first tattoo when I was 31 years old. The last time I wanted one, I was sixteen years old and it was because all of my friends were getting one. But, this time was different. I didn't want one.....I NEEDED one. I had just returned from my first PRISMS conference (Parents and Researchers Interested in Smith-Magenis Syndrome) and I was starting to feel a little panicked. Actually, a lot panicked. My daughter, Sienna, was diagnosed with Smith-Magenis Syndrome just three years before, and I was still living in a bit of denial about the disorder and what it would mean to our lives. Going to the conference was like putting magnifying glasses on. I went from being mostly blind to having crazy 20/20 vision in a matter of three days. It was a shock to the system.


I tattooed the chinese symbol for the word "BREATHE" into my wrist. It's actually two symbols, meaning "INHALE, EXHALE". Often, when I tell a curious person what the symbols mean, I get a teasing comment back, "So, you need to be reminded?".


The short answer is, Yes.


Since our journey with SMS began, back in 2006, there have been moments that have knocked the breath right out of me. Like when I first read the horrifying description of Smith-Magenis Syndrome, hours after my sweet 4 week old baby girl came off the ventilator following open heart surgery. Breathe. Or when I read Brenda Finucane and Barbara Haas-Givler's devastatingly brilliant article about SMS and "Embracing the Inner Toddler" - which basically told me that, while my daughter may advance cognitively, her emotional age will likely not pass that of a two year old. A toddler trapped in a growing body, with self-injury and tantrums to boot?!?! Breathe. And, the conference.....I went there prepared to state my case that Sienna would be different, because of early intervention and our loving home and behavior is learned and it can be changed and she's so sweet and so bright and she just cannot have what you say she has, she just can't, I JUST CAN'T DO THIS. I walked out of there with the painful realization that I didn't have a choice.


So, yes, I did need to be reminded to breathe because I found myself holding my breath a lot. They say we tend to do that when we feel fear or pain and I felt like I was in a chronic state of Fear. The initial reason behind me placing a permanent reminder on my wrist to BREATHE was so I would not forget.


However, the meaning and symbolism of my chinese characters have evolved over the past couple of years. It's original intention still serves its purpose on many tough days. But, now there are new meanings to the word.


Breath is Centering. Most religious practices around the world use the breath to focus and stay grounded in the present moment. It is used in prayer and mediation as a way of connecting us to God, leaving the past and the future far from thought. I cannot predict what our lives will look like 5, 10, 15 years from now. If I find myself trying to, I feel overwhelmed, afraid, and tired. When I look at my wrist, I am reminded to stay focused in this moment - to not get too far ahead of myself or get stuck in the past. I have all the tools I need to handle this very moment so this moment is where I need to be. And if we are having a bad day and SMS shows itself in full effect, I have to remind myself to BREATHE because this too shall pass and tomorrow is a new day.


Breath is Life. To most of us, breathing comes naturally. You don't have to think about it. You inhale, exhale, inhale, exhale thousands of times a day and you don't even notice it. But, for someone who is in the middle of a crisis - you often find yourself fighting for air. The breath either becomes quick and shallow or there are long pauses between breaths. In these situations, you see that now you have to choose life - you have to choose to breathe. And the steadier and more intentional your breath becomes, the closer you are to choosing Life and all that is good, calm, and peaceful.


Breathing is Action. My most recent discovery is that breathing is incredibly active. To not breathe is to do nothing. It is stagnant. It is Death. Sometimes, crisis situations can be paralyzing. You can find yourself waiting for something to change or for someone to fix it. But, breathing is motion. And to remember to breathe is to remember to move.


I found, over the years, that there are many things I can do to help me breathe easier. Here are just a few:


* Finding new therapies and strategies to improve our lives and help Sienna become more successful throughout her day. Often, she will learn something on her own or she will show me something that works for her. Anything that brings her peace or growth tends to bring me back to my breath.


*Stress-relievers for me include prayer, going to church, helping others, and more recently, warm vinyasa yoga, which literally connects the breath with the body. All of these things bring me back to my breath.


* I breathe more deeply and peacefully when I am engaged in activities that are intended to have a significant impact on Smith-Magenis Syndrome and its prognosis. These include hosting fundraising events or planning research grants. My breath becomes steady when I imagine the possibilties of the future for newly diagnosed families who may not have to ever know what it feels like to watch their children hit themselves or bite their own wrists out of anxiety or frustration. Taking action helps me find my breath.


Breathing is Surrendering. I saved this one for last because it is the most important - I believe that Life is begging me to learn this lesson.  This has been the hardest for me to do,  but in the moments I really let go, my breath is in perfect rhythm. Everyday I try to make a conscious effort to surrender, to hand it all over to God - who is my Breath, my Sustainer of Life. When I inhale God and Love and I exhale Fear and Pain, I become whole. It is this act that brings me Trust, Peace, and the Confidence I need to keep putting one foot in front of the other, one step at time, one Breath at a time.