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D-Day (Diagnosis Day)

Another July is coming to a close. It’s a special time to reflect and give thanks.

In the SMA community, four days a year never pass without significance: birthdays, diagnosis days, angel days, and SMA candle lighting days (the second Saturday in August).

Getty was diagnosed with Spinal Muscular Atrophy at the end of July 2010.

Her age: 4 months.

Her prognosis: She will not live to see her second birthday

Recommended action: Take her home and love her; there is nothing you can do

Reaction: Devastation

Knowing absolutely nothing about SMA at the time, we feared her that her passing away in up to 2 years might mean as little as 2 WEEKS. We made a pact to keep her smiling for as long as she is with us. In whatever time she has, she should know nothing but love and happiness, and she will have lived a good life.

Through the SMA community, we learned more about SMA than any other source and turned the tables on the “experts.” What was supposed to be maybe two weeks or maybe two years has become five glorious years. True to our pact, Getty thrives today and keeps on smiling. Her life is full of love and happiness every day.

(OK… She is sometimes unhappy when she doesn’t want to take a nap or when someone turns her music off, but hey, she’s a kid. What do you expect?)

With our loving help, Getty attends school, travels, feeds horses, swings at the playground, goes to the forest and beaches, learns her letters and numbers, drives her own power wheelchair, soaks in pools and hot tubs, listens to music, goes to the ballet, attends plays, watches movies at the theater, and spends plenty of fun time with family and friends.

No, it’s not easy. In fact, it’s downright exhausting…. But it is oh so worth it to see her smile with joy, meet her loving eyes, and hear her hoot and holler with delight.

On the original D-day, our dreams were crushed, but through her love, strength, and contentment, she has inspired us to find richer love, deeper strength, and refined contentment in ways we never dreamed possible. We enjoy sharing that with others in the hopes they get to know us and Getty a little better and perhaps find some of Getty’s magic within themselves.

It’s been an amazing five years. Wow!

We never expected to be here with her. What do we do now?

She — we — will just keep on smiling.

There is a song that has always resonated with our family. Natalie Merchant recorded a song called Wonder. Here are the lyrics and we hope you can see why we interpret it to fit our little lady and all kids with SMA. Hope you enjoy the video. :)

 

Doctors have come from distant cities, just to see me
Stand over my bed, disbelieving what they’re seeing

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Newspapers ask intimate questions, want confessions
They reach into my head to steal, the glory of my story

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Ooo, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She’ll make her way, she’ll make her way

People see me I’m a challenge to your balance
I’m over your heads how I confound you
And astound you
To know I must be one of the wonders
God’s own creation
And as far as they see, they can offer
Me no explanation

Ooo, I believe, fate smiled
And destiny laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way, she’ll make her way
She’ll make her way, she’ll make her way

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Beautiful Butterfly

Beautiful and graceful, varied and enchanting, small but approachable, butterflies lead you to the sunny side of life.  And everyone deserves a little sunshine.  ~Jeffrey Glassber

The grace and eloquence of the butterfly helps you realize that our journey is our only guarantee. Our responsibility to make our way in faith, accept the change that comes, and emerge from our transitions as brilliantly as the butterfly.

Our our family’s lives will forever be changed and enriched because we had the pleasure of being in the presence of a butterfly. Graceful and kind, she held wisdom in the palm of her hand. Her zest for life was infectious and helped people understand that there is a purpose to this time we call life. She helped transform the “what is”, to the “what could be”. Her ability to calm and comfort in times of need was a miraculous gift that transcended throughout a community that seeks hope every day.

Your beautiful wings and your graceful flight in this world will be sorely missed. Your beautiful colors that shown bright and enduring will always penetrate the foggiest of days.

Thank you for making such a profound imprint on our family and especially our little owl. She will need it on her journey as well.

Thank you to your parents who were gracious enough to introduce your beautiful being to the world. They taught and will continue to teach love, support, and perseverance. Your mission here on earth will never be forgotten and your beautiful soul will forever be held gently in the hearts of many.

We send our love. Fly free beautiful butterfly.

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Please Help Me Understand?

From Kate:

As Getty’s diagnosis day rears its ugly head, I am often conflicted with all kinds of thoughts and feelings. It is easy and valid for Mark and I to feel a sense of sadness when reflecting on the moment we were told to take Getty home. Doctors said, “take her home.” “Love her.” “Go create as many memories as you can.” “You don’t have much time, two years if you are lucky.”

It would be easy for Mark and I to feel a sense of anger and/or anguish to know that there still is no cure or viable treatment for Spinal Muscular Atrophy to date. I often find myself tugged back into anger every time I learn of a newly diagnosed family because I know their experience is almost a carbon copy of what we went through. Over five years ago, our specialty doctors said the very same things they are saying today. Things like……..”there is no hope, you would be lucky to have a year, maybe two. Just take your beautiful and perfect son/daughter home and love them, you don’t have much time. Go create as many memories as you can.”

I understand my anger is coming from a place of grief. I will own it. However, I am still often dumbfounded with these question:

  • Why are doctors and major organizations not talking to each other?
  • If they are having discussions about care and SMA protocols, then why is a small foundation like ours inundated with phones calls and emails asking us for advice on how to care for their child?
  • Why are newly diagnosed families still getting “ancient” material from doctors and advice on the diagnosis of SMA?
  • Doctors, why aren’t you immersing yourselves with updated information?
  • This isn’t meant as an attack, but major nonprofits, why are you continuing to polarize and not meet halfway to create a solidified effort to educate doctors and hospitals for SMA care?
  • Why are desperate families, in need of care, still slamming into the walls of hospital bureaucracy and standards?
  • Who is everyone looking out for?

What I would suggest is that we should all understand that the patient: the child, the teenager, and adult should be the primary concentration. We should stop accepting SMA as a self fulfilling prophecy, as an expiration. Working together to find a simple solution for care shouldn’t become a bureaucratic black hole. Families should feel confident in the care they are giving their children. Doctors should have the knowledge and welcoming ability to collaborate with SMA experts and foundations to embrace a situation and find a solution. Families are just looking for a sense of hope in a time that might very well be the most confusing time in their entire life. They need comfort, they need reassurance that something can be done, they need to be given…….hope.

Frankly, I am tired as a mother of an SMA child, to hear how doctors override the wants and needs of parents, for the sole purpose of what? Thankfully social media has been a lifesaver for so many SMA families. Truthfully, Getty would not be here with us if it were not for a few well versed SMA families willing to listen and willing to educate us swiftly and clearly. Social media gives families the ability to talk in real time with other parents who are and have been on this journey before to offer advice, comfort, and positive strategies to help find positive outcomes in dire situations.

I ask every year in my head as a mother of an SMA daughter……..why? Why are parents having to save each others children? Why aren’t incredibly powerful and persuasive organizations/foundations able to swing some of their clout to create comprehensive education for doctors and hospitals, so when there is a newly diagnosed family, they will be at least given all the tools they need to move forward in whatever direction they choose as a family. In the same breath, doctors and hospitals need to “talk” to each other and create SMA protocols to make sure there is a system in place in the case of a newly diagnosed. Am I asking for perfection? Yes, I think I am. Our kids, teenagers, and adults deserve that much. Absolute perfection. A disease’s rarity is not an excuse for ignorance.

Again, these words I use are not intended as an attack. In fact, these words are used in a way to promote an honest and open conversation. In fact, I hope that everything I have mentioned so far is wrong. Because I would rather be wrong………

I am extremely aware and thankful for the care and expertise of so many doctors and hospitals. Your expertise not only helps your patients, but your advice carries throughout the SMA community and as Getty’s parents we thank you. We reap the benefits of your research, your expertise, and your willingness to help an SMA family when a child is not even your patient. We have been the recipient of several doctors advice since Getty’s diagnosis that live across the United States and you didn’t even charge us. :)

So why are family’s still being told that their child has no life ahead of them when it is clear that life after two is possible? We (SMA community) have proven it.

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SF Marathon…..Coming Soon. Will You Join Us?

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From Kate:

Hello to all this fine Monday. I hope that everyone had a safe and fun 4th of July. We had a great time enjoying the day and lighting fireworks off. Getty loves the beautiful colors and sparkles that go along with the night. Last night was also a fun night. We are a soccer home over here and to witness history being made yesterday as the US Women’s soccer team win the World Cup was so exhilarating.

I wanted to post at least once more about the SF Marathon. Getty Owl Foundation was chosen for the 2nd time as one of the chosen foundations to represent the SF Marathon. It is July 26th. We have a couple of slots open for 1st half marathon distances. Both of these of distances are already sold out and we have the last coveted slots open for anyone interested. If you or someone you know is interested in being a part of Team Getty, please email me at hoot@gettyowl.org.

Your registration also includes our Team Getty tech shirt.

If you are interested, email me and I will give you all of the details. :)

Spread the word.

I want to thank our Team Getty team members already signed up. You guys are awesome and we thank you so very much for being a part of our team. So excited to raise SMA awareness again this year.

Here are a few pictures from last year’s experience.

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Love, Dad

From Mark:

Getty, here we are… over 5 years together, and I couldn’t be happier. Our time together, your love, and your influence mean more to me than you know.

Today, you know me as Dad — the one who rolls in after work to give you love, smoochies, giggles, dance parties, baths, and story time. I give you evening breathing treatments while Mom catches a breath of her own. I give you food, warmth, and comfort, and tuck you in. I am comforted by your steady bipap rhythm and the knowledge that, for one more day, Mom has filled your day with love, learning, and experience in my absence, and you have all you need to stay healthy and happy. I hold your little hand, and we sleep.

What you don’t know is the profound impact you have had on my life. You didn’t know the man I had been — 40 years in the making before you arrived on the scene.

In relatively short time, you have brought me depths of love, caring, and happiness I never dreamed imaginable. You have drawn from me previously unknown confidence, courage, strength, and perseverance. You have shown me the true meaning of selflessness and devotion. You have breathed new meaning into each moment of my life that flows through me and finds itself into everything I think, feel, and do. You have opened doors to passions previously unrecognized, ignored, and unknown. I have learned to appreciate and embrace each moment, to live as I ought to live, see as I ought to see, dream as I ought to dream, love as I ought to love.

From you, I the embrace the gifts of love.

Through you, I’m no longer just a man — I’m your Dad.

I love you.

Facebook-20150621-090557

 

 

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