A Great Day

Today is a great day.

I used to measure the greatness of a day by how the day went overall. If it started out great, ended great and everything in between was great, then it was a GREAT day. In fact, apparently I had so many of them that, if a day was not smooth and enjoyable from start to finish, than it was a crummy day, or a sub-par day, at best.

Recently, I have started to wonder how many people judge the greatness of their day by the same criteria I did once. If the day went untroubled, with no issues at work, no strife at home and if I was able to do something I really enjoyed like a manicure or dinner out, then that was a great day. You know, those days that are just so effortless, you feel like you are weightless and on cruise control. But, if something unexpected came up at work, if my husband and I got into a disagreement or even if I hit more traffic than usual, then my day became less than great - it became frustrating, aggravating, sometimes even a day worth forgetting.

Smith-Magenis Syndrome is shifting that need to judge a day by the amount of hiccups that arise. Smith-Magenis Syndrome makes it almost impossible to have a GREAT day based on my previous criteria - there are far too many daily unexpected challenges now. If I were to assess each day based on the amount of difficult moments there are versus the amount of pleasant moments, every day would score as a pretty bad day.

I am learning at the school of life that I have a choice to make about how I perceive my day. Earlier this week, Sienna was in the middle of a terrible tantrum and as I reached down to pick her up and tried to console her, she jabbed her finger up my nose and blood came pouring out.

But, when she was done with her tantrum, she gave me a hug and told me that I am her friend....a line she has been using a lot lately and I smile every time I hear it.

Towards the middle of the week, I took both of the kids to the pool for an end of the summer swim. When it was time to leave, she threw herself on the floor, bit her wrists and smacked her head all while screaming and yelling that she was not going to leave the pool. I picked her up and carried her out - she tried to hit me the entire way to the car.

But, just before that tantrum, she and her brother, Sean, were splashing together in the pool, chasing each other and playing like typical siblings. It brought me so much joy to see them interact so lovingly.

And, just today, about 30 minutes ago, Sienna lost her control, stripped off all of her clothes, and started throwing everything off of the shelves in an explosive and dramatic meltdown because it was time to end a fun activity.

But, the activity that she didn't want to end was an afternoon living room dance session  - Sienna and I danced on the coffee table and sofas to an old Sesame Street music video. We were laughing, giggling and spinning each other around. It was a blast.

I write this because I want to be held accountable to all of it. I never want to be convicted of allowing my circumstances to steal my joy. I never want the regret of permitting the dark moments to overshadow the beautiful ones, the losses to eclipse the victories. I am far too blessed to concede to that.

Yes, Smith-Magenis Syndrome is heart-breaking. But, if I am not intentional about how I choose to see my day, every day, it will completely devalue everything that is good in my life. I read somewhere that life is a series of moments. I will add that, if you look closely, you will always find at least one moment in every day that is worthy of celebration. One moment or one truth that will reveal to you that today IS a GREAT day.

A joyful heart is good medicine, but a crushed spirit dries up the bones. - Proverbs 17:22

Knit Together

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
- Psalm 139:13-14


I couldn't tell you how many times I have turned to this verse in seasons of uncertainty. Too many to count. I can only tell you about the time I first came across it and how it changed my perspective on my life and the life of my then tiny baby daughter, Sienna Rose.


At just weeks old, Sienna required open heart surgery. She was in congestive heart failure caused by two very large holes in her heart - a ventricular septal defect and an atrial septal defect. A week prior to the surgery, we had called 911 because she had turned blue during a feeding and stopped breathing. The surgery was scary but necessary in order to save her life so we were grateful that we had what seemed to be a relatively simple solution to healing her body: stitch up the holes and she will be Whole.


This in and of itself would have been considered a major challenge but, the surgery was only the beginning. The day that she was removed from the vent, the day before we were to be discharged from the hospital, the hospital's geneticist gave us the crushing news that our daughter has Smith-Magenis Syndrome. While describing that Smith-Magenis Syndrome is a microdeletion in the 17th chromosome that results in lifelong global developmental delays, sleep deficits and behavioral and medical issues, she also very matter-of-factly laid out the cause: "These things are random occurrences and unfortunately you are just unlucky. Most of the time, Mother Nature is very good about weeding out these genetic errors through miscarriage. But, in some cases that doesn't happen and the result is a child with special needs."


Thinking of my precious daughter as an error that my body should have known to expel immediately made me angry at myself and at "Mother Nature". Unlucky and random were not words that belonged in the same sentence as the birth of my firstborn child, whom I considered to be a gift from God, until this point. The news flattened me and I spiraled into a deep depression.


Several weeks, or maybe months, later, I turned on Joyce Meyer's program after my sister suggested I watch it. Psalm 139 was the topic of one of her first teachings I had ever seen. Learning that God is no respector of persons, this verse told me that Sienna was created just as He intended. The child who I had come to see as broken and incomplete was being portrayed by God's Word as a Wonderful Work. She is not a scientific mistake. Her life is rich with Purpose and Meaning. And, by the way....so is mine.


This was a huge revelation for me and the start of a major transformation in me. Did I even know that I had a purpose prior to discovering that she had one? If I did, I clearly had not searched very deeply for it or cared much enough to find it. But, now, the realization of her purpose has led me into a passionate search for mine. And while the questions have not all been answered, I do know that my purpose is greater than myself. It is to be as outstretched as far as I can reach, to be connected to the hurting world and to love just as He loved: unconditionally and universally. Admittedly, I am a work in progress and Sienna's future is uncertain. Sometimes, I even catch myself describing the syndrome just as it was described to me and I have to remind myself of what the scripture says. I am so grateful that, on the days I worry about her or I question my own life, I can turn to Psalm 139 for strength and comfort. The following passage comes from the front of a congratulatory card we received shortly after her birth and it describes Psalm 139 beautifully:

JUST THINK


Your DAUGHTER is here not by chance,
but by God's choosing.
His hand formed her
and made her the person she is.
He compares her to no one else -
she is one of a kind.
She will lack nothing
that His grace can't give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.


My prayer is that we may all come to know that God has a purpose for each one of our lives and that we may have the courage and the faith to pursue it.

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.