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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.