Getty Owl Foundation

Thank you!

From Kate:

This post may be a slight departure from our usual journal entries but I wanted to take a minute to thank someone and to ask, if you so choose, to get active for our SMA families.

First and foremost, I am attaching a photo of an incredible gift I received in the mail today. I have no idea who sent it to me, but it is such a precious gift. Now my little Getty will be visually with me on a daily basis and I that whoever sent it to me truly is a terrific person. I just put the necklace on and I just realized that the charm that is in the shape of a heart has a chime to it. Now when I am away from Getty and I hear that chime, it will be like she is saying, “Hi Mom.” Terrific! This gift lifted my spirits greatly today and just knowing you took the time to do that really meant so much to our entire family. Thank you.

In the time that we have been introduced to SMA, one thing we know is that there currently is no cure, but there is research being done and lots of people are raising money and really pushing for progress. Mark and I found out through the FSMA website that there currently is a bill in Congress called the SMA Acceleration Act H.R. 2149 & S. 1158. This will allow for a national clinical trials network for SMA, fund education, and expand and intensify federally supported research, proper screenings, and much more.

So if you have time, Mark and I would ask you to write a letter to your Representatives and/or Senators to ask them to support these bills. We are working on our own letters to our Rep. Doris Matsui and Senators Boxer and Feinstein. The more our elected officials are aware of this genetic disease and how it affects families, the more likely we are to get their support.

Mark, Getty and I just wanted to thank everyone for all the love and support. The guest book helps us start our day, every email, card, prayer, phone call, casserole, and treasured gifts are such motivators for us and it just helps us focus on our little Getty. Thank you!

Mr. Teddy

From Kate:

The week we found out about Getty’s diagnosis we contacted Families of Spinal Muscular Atrophy (FSMA) for their information packet. Along with the packet came a HUGE box full of gifts for little Getty. Her absolute favorite gift has been a cloth bear, that we call Mr. Teddy. She takes Teddy with her for naps. He is just light enough and small enough for her to hold and cuddle.

Teddy was handmade by a grandmother with an SMA grandson. It is in tribute to him that she makes hundreds of them. Mark and I hope to find something significant to add to the care package one day to help make families feel more comforted after learning of their child’s diagnosis.

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.