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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.

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