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Damn You John Mayer!

From Kate:

I cried as I drove out from the garage of our house. I got to the end of my street and welts of tears formed in my eyes. I should not have been listening to John Mayer, his music makes me reflect and reminisce and I knew I needed to find something more upbeat if I was going to make the 20 mile drive to school. So I picked one of the R&B stations. Normally I would not have chosen this type of music, but there was just something about it this morning that kept my mind off the fact that I was leaving my baby Getty for the day.

I was going to work, somewhere safe and comforting. It has been my home away from home for the past nine years and yet today I was dreading going. It just solidified that fact that this was all really happening.

I drove up and parked and just kind of stayed in my car for a bit. I truly was hoping that I wouldn’t run into anyone because I wasn’t ready. Before I could sprint to my room, a pack of kids were walking around and coming right for me. “MATHANY,” they yelled. They came right at me and hugged me and I just stood there and embraced the love. It felt great and that fear and apprehension I was feeling went away. To them I was just Mathany, their teacher, and that was enough. All the baggage I was carrying with me, along with some school supplies, was baggage I was carrying, not them. They were just happy to see me. It felt terrific!

I spent a lot of time in my room to just reflect and get ready for the upcoming school year. In my office, I looked at a whole bunch of pictures of Getty that I had taped to the wall when she was first-born. My office very quickly turned into a Getty shrine after I got back from maternity leave last year. It was my way of dealing with having to leave her after 6 weeks. I believe I will be adding many more pictures of Getty to get me through every day now that I am going back full-time.

It was so comforting to see a few of my colleagues. They were gracious with hugs and they were so comforting. I am so glad I ventured out of my room today. I needed to walk the hallways, I needed to get over the sting of knowing I was coming back, and I needed to see loved ones that help support my family and I. Our school is a family and we take care of our own.

I’ll be honest, it is difficult to be the recipient of the comfort and support. Usually I am on the other side giving it, so receiving it is new territory. School starts Monday and I need to just focus on one day at a time. I started to feel a bit overwhelmed by all the things I still need to do and I realized that taking a little at a time will keep me focused and steady.

I safely drove home as fast as I could, so I could scoop Getty up in my arms to kiss her all over. I made it home only to find my sweet angel asleep on the couch. She was sleeping so soundly but I couldn’t control myself and I picked her up and hugged her. She woke up in an obvious startle and looked at me as if to say, “Hey Mom I was sleeping, didn’t you see that my eyes were…..shut?” I couldn’t resist after being away from her for hours. I thought she would embrace my hug, but she ended up looking at me like I was crazy. So note to self, if Getty is sleeping, leave the poor girl alone until she decides to wake up. That look on her face though priceless, was not a positive expression. 🙂

Football tonight. Watching with Grammy and Papa. The picture attached is of Mark and Getty laying on the couch watching the game. It was so sweet. Looks like we have another Cowboy fan, because she seemed to talk quite a bit tonight while the Eagles were playing. I believe if I could speak “baby”, I would say Getty was giving the Eagles a piece of her mind. Good girl!

A long walk to the park helped Mark and I reconnect after such an emotional day. Cooper also got to get some exercise in while running after his ball.

The wind picked up tonight, the breeze felt terrific. The windchime outside is making beautiful music outside our door.

I keep going back to a phrase that has been helping me on a day-to-day basis, “one day at a time”. I feel like it gives me the chance to not be so hard on myself. Days like today are very emotional and for all different reasons and I need to know that, it is okay and that perhaps the next day could be harder or easier. Even with all of the uncertainty I need to help my family keep moving forward with the notion that life is truly what you make it. Miss Getty is the biggest blessing to Mark and I. Her spirit drives our lives now and we are so fortunate to be on this journey together as a family.

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Whoooo is Getty

From Kate:

Getty and I had a girls day out today. After opening a care package from her cousins we had lunch with some really special people. The picture I am attaching is Getty and a couple of her new friends that her cousins, Sarah and Rachel got her. Getty is the one in the middle. 🙂 Thank you Stumpf Family for the wonderful gifts.

We spent lunch with a few of mommy’s friends and their terrific children. Getty got to meet Jaycee, Abby, Joey, Alex, Michael, Lindsey, and Andi. Thanks for getting us all together it made for a special day.

To top the day off, we surprised Grammy at work. Getty just loves her Grammy. We couldn’t stay long, but it was nice to stop in and see her. Getty will see you tomorrow Grammy.

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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!

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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.

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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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