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Sometimes You Just HaveThose Days

From Kate:

It is not often that I go back and look at pictures before Getty was diagnosed. For several reasons, it is easier to live in the moment and to absorb every minute with her, instead of reflecting on the past. Don’t get me wrong, she was just as cute of a peanut as she is now, but there is still quite a bit of sting that seems to come over me when I do see some earlier pictures.

Well I had that day today. I really should of kept myself more busy because I had a little time to go down memory lane and I was stopped in my tracks with grief. I was looking at her pictures and thinking about all of the things we didn’t know yet and how our lives were literally going to be turned upside down within a month’s time.

Getty would have a team of specialty doctors, Mark and I would be frantically trying to learn all we could about this “random” genetic disease. Constant doctor appointments, blood work, Getty would start to lose her swallow, she would never lift her head, she would never walk, surgeries, shots, and the elusive RSV winter season we had heard so much about.

So as I looked at some of her pictures I kept asking myself, “Why do they hurt so bad?” I guess the obvious answer to me is that they are all a reminder of how life can change in an instant. You go one day knowing you have a healthy child to the next, when you are told there is no treatment or cure and your child will likely die in less than 2 years.

To attempt some comic relief, I tired to remember what my concerns were as a new mother at that time. I guess how to balance career and motherhood? How to remedy gas or butt rash? I even think at one point I was actually concerned about losing the baby weight. That sounds so ridiculous now. Who the hell cares?

Yes life can change in an instant, perhaps people who can understand what that must feel like are those who have that reality. I never took that phrase seriously. I was a new mom, great career, house, cars, food, husband, dog, savings and insurance. “Um…. okay right like something significant is going to happen to me. Look at the safety net I have created. What on earth can change?”

But the real answer I finally found in my heart today was that those pictures were not just a reminder of how life can be altered in a moment, but it was more of a reminder of the innocence we all lost when Getty was diagnosed. This disease robed us of our innocence. Carefree doesn’t live here anymore. Spontaneity doesn’t live here anymore. Freedom doesn’t live her anymore. We have to be constantly alert, advocating, resubmitting, fighting, manipulating, stressing, diligent, and any other word that would describe fighting every step of the way to make sure Getty gets everything she needs to be healthy and happy.

Notice I never said patient. Patience doesn’t get you anywhere. Patience causes delays and delays can mean life or death.

No, patience is only reserved for the little lady of our household. Getty gets all of it and deserves every ounce of it.

So I had that day today. I got to grieve a little more today and afterwards I felt a lot better. The pictures aren’t stinging like they once were and so I guess what I have done perhaps is stopped allowing those pictures to keep my feelings hostage. I wish my feeling had not kept me from looking at these pictures because they are beautiful and hold such wonderful memories.

Getty’s first bath, it is amazing she was that small. I think she even fit into one of my mixing bowls. Getty and I watched pretty much every World Cup game together in the summer of 2010. Whether she was watching or sleeping, I just enjoyed holding her. Our favorite team is England, we share the same boyfriend, John Terry, so of course she needed her own jersey.

Very good memories.


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  • Morgan says:

    Kate you are such an amazing woman. Your life is an example of how to not take any moment forgranted and I am always learning from it. I hate that you suffer at times, and that Getty was diagnosed, but your story is powerful in your circumstances and your family has not settled. Frankly, you and Getty and Mark are moving mountains. It is neat to watch the love flow through you guys into Miss Getty. I am proud to know you guys! Always praying. Love you all 🙂

  • jenn lozina says:

    Kate your words are so true- stinging and yet a beautiful reflection. I feel the same way about videos and photos taken in my daughter’s first 6 weeks.

  • Michelle Lagana says:

    Your post was just what I needed today. Was having my own grieving day. They seem to pop up out of no where for no apparent reason. We lost our sweet Maggie to SMA almost 2 years ago, she was four months old. Your words are everything I have felt at one time or another. There are many days that I long to go back to the first 4 weeks of Maggie’s life when we were naive and knew nothing of SMA. How our lives have changed and not always in a bad way. We lost so much, but we’ve gained so much as well. I am thankful that people like you are out there doing such wonderful things. Just want you to know you have support from those you don’t even know. Many blessings to you and your beautiful family. 🙂

  • Barbara Coffman says:

    I’ve never met you Kate and I never would have read any of your words if it weren’t for this horrible disease, but now I never miss your posts. Sometimes they make me smile, sometimes they make me cry but they are always so sincere, real and unforgettable. Life is truly a vapor and as fragile as as fine glass. Thank you for reminding me of this and for sharing your heart so completely. Getty is so blessed to have such a wonderful and tender mommy.

  • gettyadmin says:

    Thank you Morgan, I love you. Jenn, we are walking this together and I take great comfort in that. Michelle, I was so touched by your comment. You understand. I can’t tell you how comforting that is. Barbara, thank you for following our journey. The amazingly good, the bad, and the uncertain. I do appreciate it. You know I never really know who is reading now, we have been on this journey for over a year and to think that people not related to us or friends of ours are now reading and following helps me realize that SMA is losing its power due to talking about it and helping people become aware. I take great comfort in that.

  • Marcela says:

    Kate, every time I look at baby pictures of Amanda I cry! I am not even sure why it is that I do. I guess it is just remembering that feeling when everything was ok…I am crying just writing this, so I will stop right here and just send you a big hug!!

  • gettyadmin says:

    Oh Marcela I wish I could just hug you! Wish we didn’t live so far away.

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