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A Reflection from a Father

From Mark:

My how things change.

At first, we said we wanted a boy. Nope.

Then, we said we will love our girl, but we hope she’s not too frilly. Nope.

We also said, just let her be healthy. Nope.

All the standard prenatal tests were clean. The pregnancy was without flaw. The birth was so wonderful. I cast my eyes upon my precious daughter for the first time and then held her lovingly with Kate as our hearts and eyes swelled with love.

SMA began to manifest at around three months when we noticed Getty wasn’t meeting her movement milestones. We attributed it to slow growth and a larger than average head size.

At age four months, on Friday, July 30, 2010, one year ago today, the floor dropped out from under us.

Every hope we had for Getty disappeared in an instant when the words fell out of the neurologist’s mouth,

“Spinal Muscular Atrophy . . .”

“Type 1 . . .”

“Degenerative . . .”

“Two years.”

That’s it. She has a life expectancy of two years. Not only that, but we felt we have to spend the rest of her short life bearing the cruelty of just watching her strength waste away as this disease robs her of function, robs us of our lives as a family, robs us of dreams for Getty of playgrounds, sports, school, dances, dating, and maybe even holding her hand and walking with her as she starts another stage of her own life with someone she loves.

I recall the silence and shock after we listened to those words in the neurologist’s office. Kate had just told Getty moments before that she can’t leave us, only now to be told things would be otherwise. The look on Kate’s face at that moment was almost indescribable . . . panic, sorrow, grief, despair, horror. No words could or needed to be said.

We managed to get home. That weekend, we cried and cried. We hugged each other. We hugged and kissed Getty not knowing how many more hugs and kisses she would ever get. Thankfully, we managed to get out of the house and silently reflect in the park.

As some of the shock wore off, we wondered what we would do. Getty is completely unaware of SMA. She has no idea what she should be able to do. Unlike us, she has no sorrow or sense of loss. She is happy. Kate and I made a simple vow: keep her happy. She deserves nothing less.

Shortly after D-day, I wrote, “Our poor baby girl is going to grow weaker and leave us within 2 years, and there is nothing we can do.” I also wrote, “All we can really do is love each other as much as possible in the time we have left with our baby girl.” If all of that is true, then since she is age 16 months now, well . . . you can do the math.

This takes me back to my original thought in this post: My how things change.

We hear over and over in the SMA community how doctors often tell newly diagnosed SMA families to “take your child home and love him because there is nothing you can do.” Sadly, in the weakest cases of SMA, there may be little or nothing anyone can do for now. However, as we have learned, in Getty’s case and in cases like hers, there is so much we can do to provide Getty the greatest quality of life while keeping her as healthy as possible, living up to our solemn vow to keep her happy.

Getty loves and laughs. She clicks and coos. She smiles and sings. Best of all, she hoots. She is expressive and smart. She is wise and peaceful, scrappy and strong. She inspires without speaking and motivates without moving. She can hardly lift her finger, yet she moves the world.

Her deep and soulful gaze speaks to me. She tells me she is happy. She tells me she has needs. She asks me for help. She asks me to love and provide. She asks me to teach, to sing, and to fight. I know she understands me though my gaze, “Don’t worry, honey, Daddy is here.”

Kate and I have learned and changed so much together in the past year. That change is more profound than people may think, but I don’t expect anyone to truly understand all it entails. I don’t expect anyone to comprehend our newly found focus, priorities, and motivations. Much of it is a change in spirit, so it is difficult to convey in words, though when I talk to another SMA Dad, I feel a deep and peaceful bond, despite the mayhem thrust upon our lives.

We have learned to advocate for Getty’s care and fight for her needs. We have learned to be her voice. We have learned to plod ahead in the face of ruin. We have learned not to yield to a system of rejection and denial. We have learned to convert despair into hope. We have learned to embrace greater depths of love and humanity. We have learned to better serve a greater purpose.

There is so much more to Getty and to SMA than to “take her home and love her because there is nothing anyone can do.” We have learned and we know better.

In the past year, I have gone from “Dad” to “SMA Dad.”

My how things change.

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  • Brenda Barberena says:

    :*****) Wow Mark, wow <3 Getty is beyond lucky and blessed to have you as her father. Keep up the good fight, the immeasurable love, and the uplifting spirit. Getty wouldn't be able to change the world is she didn't have such a loyal, believing, faithful, embracing, and strong support system known as mom and dad <3

  • Audra says:

    Mark, thank you for writing this. I think it’s important for folks who are not in the SMA community to know that, while our kids have the disease, it doesn’t define them. Getty is simply wonderful in every way. And, while doctors often make us feel as if the world is ending on D-Day, they don’t factor in the power of love, acceptance, hope and happiness. I’m so glad that you have. 🙂

  • JoEl Randall says:

    Good morning…..both you and Kate, continue to show us a love and bond, that most of us parents will never have. Not that we don’t love our kids, but it sometimes takes something “else” to show us what life and love, are REALLY about. I continue to be in awe, about all of you. You all continue to teach me things about life. I recently went down to Monterey with my daughter (28) for some mother daughter bonding time. We are all so busy, and the 4 days we spent down there, were so much fun. From sitting in bed in our jammies, to walking along the beaches, to looking at the fish, I remembered your trip down here, and how Getty loved the fish. I’m a lucky mom, and I continue to hope and pray for all of you, that there will be a cure, or at least something, that will stop the progression of this awful disease, and that Getty will be able to look at all those fishies again.

  • Rob says:

    This is one of the most beautifully written posts I’ve read. You’ve captured the full spectrum of emotion and drawn us all closer to Getty and how Kate and you have chosen to play the cards you’ve all been dealt. I’m confident in saying that nobody can truly appreciate just how much you’ve been through emotionally and physically. You’ve inspired me to be a better Father and Husband. Choosing to love every single day is the single best decision you could have made a year ago. Miss Getty, Kate, and you are in my thoughts and prayers.

  • Tj Gooden says:

    Well said Mark. Reading your post brings me back to that day. Give our love to Getty.

  • Matt Hiley says:

    I couldn’t have said it better myself. Everything you described is exactly what we have felt. I have shared this link on FB to help others understand. I hope that is ok. If not let me know
    Matt Hiley(Braylin Hiley SMA type 1)

  • Leslie Stumpf says:

    Mark and Kate,

    Both of your posts as so well written and heartwarming. We are looking forward to our packet to spread the word… more people have to know about SMA, working on the cure, and just be aware of it. Rachel and Sarah are planning on doing their Girl Scout Silver Award on SMA awareness. We look forward to seeing you and Ms. Getty soon 🙂

    Leslie, John, Rachel and Sarah.

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