A mom post today….
We were driving to the zoo on Sunday morning and Jess turned to me
“Do you know what today is? It’s today.”
Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language. “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.
We’ve talked about it, ad naseaum, I’m sure. It’s hard not to when a day just sends your life in the total opposite direction of where it was headed. But the truth is, the direction spinning really started the day of Lily’s surgery. It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal). We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying. It seemed so unfair – she had only been ours for a week and now we were in danger of losing her. At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken. The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments. Those 66 days changed our lives in ways that we probably don’t even know.
And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl. Sometimes words can’t do it, but sometimes photos can.
We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is. But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.
But we’re here, 2 years later. We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia. It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).
This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa. Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong. We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!