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From Kate:

Getty’s last day of trialing the particular power chair she has been using was on Wednesday. We do not know when the next one will become available for her to continue the great progress she has made so far.

I have been in discussion with all kinds of people within our insurance and other resources we can tap into. This fight is obviously not over, it has only begun. Mark is doing lots of research as well. I can google things, but he can really google things. 🙂 Isn’t that strange how one person’s search can so much more affective than another? So I leave that area of expertise up to him. 🙂

I titled this post “Unexpected” for a reason. I do try and find a title that encompasses the theme of a post, and I think this one is pretty accurate.

Getty and I drove to her last appointment for her chair on Wednesday. I was so excited that she would be having her fun “chair time” time as she always gets on Monday, Wednesday, and Friday. This week would be different though, the chair would be shipped off right after Getty’s appointment.

Inside I was so sad. As we drove, I thought about how this fight is just getting started and in the meantime we don’t know when another loaner chair would be offered to us. With RSV season on its way, I felt like our clock was running out and perhaps we might not see another one until after April or May of 2014. I was trying to keep in check, I was doing good, until I started to get Getty into all of her braces.

The OT and I were in discussion while I was putting on her braces. I got a chance to stress how frustrated I was with this process, the system, the “everything”. Knowing that Getty was having so much fun learning how to use the powerchair on her own is so exciting for her. She gets sassy with me if I do not get her braces on quick enough. As I strapped her into the chair and the necessary precautions were taken to get her on her way I was started to cry.

I was crying because honestly when it comes to Getty and her diagnosis, whatever brings her happiness, we fight for it. At that moment, knowing that Wednesday would be the last day until I don’t know when, felt like I had failed her and I just wept. I wept in front of my child and I tried so hard not to. I said to Getty, “You go have a good time with the OT, mommy will sit back here and watch you, you rockstar.” We locked eyes and I think she could see that I was visibly sad.

I sat back on a bench and I watched her get started with her training and then something unexpected happen. Usually once Getty gets the green light, she is off moving about the room. Tearing around corners, starting and stopping, listening to her OT’s commands. But this time she did not move in that manner. She didn’t move at all. She was facing me and she started to move towards me instead. I had my hands propping my head up, still with tears in my eyes and she kept getting closer and closer until she stopped right in front of me. Her OT was asking Getty to “get going”, but she wasn’t leaving my side. She just kept looking at me.

I often don’t know what Getty is feeling. I mean I can tell by her sounds, eye movement, and her overall demeanor, but usually I am guessing. She lacks the ability on her own to hug me or snuggle one her own with me, or say to me maybe “what’s wrong mommy”. But her actions at the beginning of her training said it all. She saw me sad and that was her way of comforting me. So incredibly unexpected and so life changing for this mom.

I got up from the bench and I kissed her face all over. I whispered in her ear that mommy was fine and that I wanted her to have the best day today. “Knock it out of the park kiddo, go for it Turbo.” I said. I gave her a huge genuine smile and I squeezed her cheek. My tears were now dry, my smile was from ear to ear and I was so ready to watch her take flight.

She immediately turned around and found her OT and started her training. I stayed in the background to watch her. She weaved in and out of objects. She started and stopped, she weaved right and left. I noticed Getty would glance over at me once in a while and my smile increased in size.

When the session was over, I picked her up to transfer her and she gave me a huge smile. I kissed her all over and then placed her on the stroller. A huge squeal of excitement bellowed from her mouth, to which I squealed back.

As we drove home, I thought about what had happened between us in the OT office. Getty has always been our teacher. I find that when I am not stopping to listen to her. I mean really stop to listen, I lose my center. With so much fighting and stress that comes with getting everything she needs and deserves, it is easy to get wrapped up in it. But the action and look on her face as she drove straight for me at the beginning of her appointment brought me back down. It was her way to show concern, but I also think it was Getty’s way of letting me know that this will all work out and not to worry.

Getty has always been our guide. I always say, “Getty will let us know.” And she did. It was me that needed to stop and listen.

It is now Friday and I am not stressed over logistics or finding just the right piece of literature to arm ourselves with to make our case. It will come and she will get her chair. I just need to take a breath and just enjoy life. Life with Getty.

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  • JoEl Randall says:

    This brought tears to my eyes. Following Getty, shows me so much more than I ever thought possible. You get your “mommy” moments, in a way that I never will. Your moments are so much deeper. While I’m lucky to have 2 healthy kids, your struggles make me see that there is so much more to learn. I don’t know your family, but I love your family. you teach us all so much! Thank you!

  • CARI POWERS says:

    No need to search for the correct piece of literature, Kate! This beautifully written, and very touching experience with Getty is all thee “peeps” will need to read… ❤

  • Lindy Heberlein says:

    What a blessed moment you had with your daughter. Thanks for the reminder to STOP and listen to my children. Children teach us so much, hopefully we are “listening”. Amazing that it only takes a look from those precious eyes to make you melt. Thank you for sharing.

  • Bobbie Fletcher says:

    Wow. This post made me cry….and my heart smile! How appropriately titled…..Life is all about moments – most of which we expect…but I’ve learned that’s it’s the unexpected moments that impact us the most. Getty’s actions were simply beautiful and yes, unexpected – but then again, after following her story for almost 3 years, I’ve learned not only about the facts of SMA – but also what a loving and tender person Getty is…and in that case, her actions were completely expected! She’s one amazing owl, that Getty! And I’m definitely going to be praying for unexpected income, blessings….whatever it takes for her to get her chair for “keeps”!!

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