Getty Owl Foundation

Managing Time

From Mark:

Leading up to Getty’s birth, Kate and I wondered how we would manage balancing our already hectic lives with caring for an infant.  After all, in addition to Kate’s students and my clients, we were already bearing responsibility for a dog, four cats, and a rabbit.

Upon Getty’s arrival, we were going through the normal struggles to learn the basics of newborn care: feeding, sleeping, bathing, playing, changing. We heard from many that infants were a lot of work, but it’s a labor of love. We came to appreciate the meaning of those words.

We never would have dreamed that the stresses and pressures of attempting to properly balance the needs of a child, a marriage, and careers, as we experienced them a mere two weeks ago, would be seem like “the good ol’ days” of simpler times.  Once the doctor announced the SMA diagnosis, all the flowing visions of our future lives evaporated; the scaffolding of future dreams collapsed.

Thrust into a new reality, we find ourselves struggling to overcome the enormous shock and sorrow that accompany the devastating news. Adding insult to injury, we feel as though we have fallen face down in the mud at the base of a tremendous cliff face where the only proper relief can be found in climbing.

We attempt to grapple with a wide variety of issues simultaneously, any one of which is deserving of more time, energy, and attention than we have to devote. We are doing all we can to learn and plan about everything from genetics to medical equipment to various overlapping medical specialties to typical SMA progression to emotional outreach and support to employment benefits to developing new work schedules to personal financial needs to scheduling medical appointments to establishing communication channels with various medical professionals to proper SMA infant care to contemplating potential quality of life decisions we will be called upon to make on behalf of our daughter.

How wonderful life would be if our biggest concern was locating a good day care provider. Two weeks ago, this issue seemed a bit daunting. Today, we realize how easy we had it.

Despite our emotional and physical exhaustion, we remind ourselves that Getty is the same cheerful little girl now that she was just two weeks ago. She has no idea she is lacking a Survival Motor Neuron gene, that she suffers a critical protein deficiency, or that she is failing to reach certain developmental milestones.  She doesn’t know that some day her feeding and breathing will become labored.  She is unaware that her life may be shorter than originally thought.

Today, she is happy. Today, she giggles, squeals, coos, and hoots without a care. Today, her deep blue eyes gaze lovingly at her parents, and she can’t help but grin.

Through her eyes and her expressions, it seems as though she asks us not to be sad, not to fret or worry, but only to share our love with her today, at  this very moment, because this moment will never come again.

While we would greatly prefer to lead a life free of the encumbrances we must endure, we must endure.  However, we do not begrudgingly perform for our daughter out of a sense of duty or obligation; rather, gladly, from a sense of love and honor for each other. We fend off feelings of personal tragedy and bitterness and we remain determined to give our girl all the positive emotional nourishment she deserves.

A Candle for Getty

From Kate:

We want to thank everyone for lighting a candle for all of our children of SMA. We have found the SMA community to be so gracious and helpful. We thank you for your incredible sense of purpose and determination.

Mark, Getty, and I have just begun this journey. We have no idea where our journey will take us, but rest assured we will be doing it together.

Light a candle!

From Mark:

Please light a candle tonight at 8 pm your local time in honor of those affected by and lost to Spinal Muscular Atrophy.  August is SMA Awareness Month and the 2nd Saturday is the annual candle lighting event. Thank you.

It’s Bert!

From Kate:

So we finally figured it out. For the longest time Mark and I have been trying to figure out who Getty sounds like when she laughs and then it hit us: Bert, from Sesame Street. She laughed while we walked tonight and were aren’t quite sure why but it was infectious for sure. What a goofy kid.

We stopped to eat some yogurt tonight and I locked eyes with her and this rush of warmth ran through my body and I thought, “I get to be her Mom, I am Getty’s Mom”. How lucky is that?

I took a picture of Mark and Getty tonight while we enjoyed dessert. What a pair. She was certainly eyeing our yogurt.

Hats

From Kate:

I am sure for most 4 month olds, holding a toy in their hand is probably not a huge feet. Perhaps it doesn’t take much to grasp and move an object from one hand to the other and ultimately winding up in their mouth. Well for Getty her grasp is pretty weak, I have a little ball that she can hold onto just long enough to get to her mouth and then it falls from her grasp. She does not frustrated, she just tries again. As her mother I watch her try over and over and I get frustrated for her because I want her to be able to reach that goal. She persistently tries but to no avail. She then drops her ball and slowly brings her hands to her mouth and plays endlessly with her tongue. There is something enchanting about grabbing her tongue with her fingers. So cute to watch. Rest assure I have video’d several versions of it. It will never get old.

A walk today helped Mark and I clear our heads a bit. I go back to work in a week and I am wondering what that is going to look like. I am going to be half-time and so it will give me lots of wonderful time with little missy. I work with some incredible people who love what they do. I look forward to seeing them because I know they will take good care of me this year. I know I will be in good hands while I am away from my family.

Getty will be in terrific hands during my absence. She will have her loving and adoring father for most of the time while other days will be with her wonderful grammy. I also don’t want to forget her big brother Coopie will take great care of her too.

Tomorrow my mom and I are going to Kaiser to pick up a pulse oximeter for Getty. It will measure her pulse, breathing rate, and blood oxygen level. The dr. wants us to test her this weekend to establish a baseline.

I am posting a picture of Getty and I wearing our hats. She was so fascinated with the one I was wearing today I thought she might like to wear her own for our walk tonight.