Here is to 4!
From your parents,
This day holds extreme significance to both of us as your parents. I would assume the obvious to most is that you have hit a milestone that so many may take for granted. Yes it is significant that you have and will continue to grace us with your smile, your laugh, your expressive eyes, your sassy expressions and yells of happy and disapproval exclamations, but it is even more than that. We decided to write individual letters to you. While we both feel the same in so many ways, when we read these to you today, we kind of wanted to read our own to you with each of our voices, so you truly understand what today is all about. Daddy will go first.
What does that mean?
I can’t help but pause and reflect on you, me, and our lives together.
You know, they said you wouldn’t be here today. We proved them wrong, honey. We proved them wrong and you continue to do so.
Meanwhile, I hope we, together with all your loving friends around the world, taught them a thing or two.
Yes, one of the first guttural reactions to your birthday each year is a sense of defiance and triumph. But what’s lurking below the surface? Let me tell you.
In a word, it’s … Love.
You have taught me to love like never before. It’s deep and unyielding. It drives me to breathe more deeply, sing, smile, share, care, relax, and fight.
When each day is done, I see peace in your eyes…
I hear it in your soft hoots and giggles…
I feel it in your warm soft stillness…
I sense it in your wisdom and patience…
And the deep rhythmic hum of your breath, as we drift off to sleep, reminds me to appreciate the simple facts that you are happy and you are here. That’s really all that matters.
I stay up for a little while longer just so I can watch your numbers change as you slip into slumber.
The stresses and pains of the day melt away. I am delighted to know you got to smile, laugh, and learn… and I got to share my love with you for one more day.
It’s been four years together, Getty ….
You, mom, and me.
Four years of living and loving each moment… one day at a time… and it’s been a fantastic ride.
Thank you for sharing and inspiring love. I am one lucky dude.
For roughly five years in total you have been a part of my life. In some ways literally. You continue to teach us how to love, how to take deep breathes, and ultimately how to live with grace. Every day you wake up it is a new adventure. The days may seem routine to some, but to us it is like getting on a space ship and letting the world offer its great rewards and we get to see where it will take us. Every single day you smile. With every single new day you grow and blossom into a little lady. What I am trying to articulate is that, me, your mom, feels like the luckiest mama in the world. Every single day, I get to have conversations with you. Every day I get to hear your beautiful voice. Every day I get to watch you roll your eyes at me for something I need to fix immediately. Every day I get to be yours and honesty Getty, that is all I want to be, yours.
Thank you for fighting. Thank you for living life to the fullest. Thank you for teaching others what life is really about. Thank you for showing love and patience.
At 8:16pm tonight you will officially turn 4. I remember when you came into the world like it was yesterday. Your eyes were so wise and your disposition was so calm. There was an air in the room that you created that wonderful night that still follows me. It was a sense of purpose. Getty you are here for a reason. You are a force to be reckoned with, yet you also permeate a sense of purpose to all that you meet. We are so incredibly proud of you and all of your accomplishments so far. You love school, you love books, you love music, you love driving your power chair, you love adventures, you love surprises, you love life.
Getty you are our compass. Continue to lead us so that we can make sure you life continues to be enriched with love, light, and happiness.
Happy Birthday Getty!!!!!
The Many Faces of SMA
Guest Blogger Laurie Hoirup:
I have never been asked to do a guest blog before and I am quite honored to be doing so now. I was lucky enough to participate in the Getty Owl Run/Walk as a vendor and I can’t begin to stress enough how very wonderful the experience was for me.
Anyone visiting this website already knows about Getty and her diagnosis with SMA 1, along with how debilitating it can be. I’m sure you are also aware of the incredible support that surrounds her daily, from her amazing parents, family, friends and others who have been touched by their determination and strong spirit.
I’m not so sure you are aware of the spectrum of SMA… I am 57 years old, diagnosed with SMA 2 as a very young toddler and though my disability is certainly significant, it in no way is as severe as that affecting the very youngest children, diagnosed usually by the age of one.
I am for the most part rendered with quadriplegia; no use of my limbs except for my right hand, which operates my power wheelchair on a good day. I am however, blessed to be able to feel everything throughout my body, have complete bowel and bladder control, can sit upright, have some support of my head, I can hug and I can kiss.
I require full personal care for every aspect of independent living; toileting, dressing, showering, grooming, feeding, outdoor mobility, and driving. I am however, blessed with a wonderful husband, family and friends, the ability to complete my education, marry, give birth to my two amazing children, witness the birth of my grandsons, worked at a great job and write my memoir.
My breathing capacity is very limited; 23% of normal, which limits my strength and threatens my life and yet, I am blessed not requiring a full-time ventilator or oxygen, I can speak, I can chew, eat, swallow fairly well and I can share my joy of life with others.
There are also, two more stages of SMA; type 3 and type 4, each having the diagnosis coming much later in life, with considerably less effect on muscle function and ability to live life independently, for that matter, to live. They are truly blessed, especially in comparison to myself, but more so, for the huge differences from SMA 1.
The other faces of SMA are those who are not afflicted with the disability at all, but are affected in other ways, due to their love and compassion for those who are; family, friends, colleagues, doctors, nurses, teachers and the list goes on and on. As I look around me and see all who have supported me throughout my life, and then look at Getty and all those who are at her side, fighting her battle, I realize just how far and wide SMA stems.
These relationships make life worth living for however long, and though I can’t speak for those like Getty, who are probably too young to be so philosophical, I believe that to live and be loved is the real magic here and where there is SMA, there is definitely love.
Getty Owl Foundation has brought together people from all aspects of life. It has brought out the goodness in people, the willingness of others to give of themselves and the belief we can make a difference through love and hope. I was truly honored to be part of this incredible team!
Laurie Hoirup is an incredible and inspirational SMA Warrior and disabilities advocate.
Please visit Laurie’s Blog here.
Please check out Laurie’s book here: I Can Dance: My Life with a Disability