11/4/16
David got home early from work. Cooked dinner. Kids were happily working in workbooks. Talia was alert and laughing and he said “life is great”. And then we both paused and looked at each other. It was the first time he had said that since the diagnosis three months ago. Life is great, and simultaneously terrible. It's important to remember to focus on all of the working parts of our lives rather than continually obsess over the broken part. Like one of Talia’s doctors told us, 99.99 percent of Talia is working perfectly. That missing 00.01 isn't something to be overlooked, but also shouldn't override the rest.
Reflecting back on our lives post diagnosis-
The first month post diagnosis I didn't want to connect to Talia at all. I felt like any connection I made to her would only make the loss of her greater. But you can only ignore your child for so long before they do something cute or unique that brings your focus back to them. Even Talia with her limited ability can still laugh and look with adoring eyes at me. I could only stay away for so long. The second month I truly just wanted her to die. It’s blunt to state it that way, but it’s true. Just go away so I could focus on Nathan and Audrey. I felt angry at her for sucking my energy and my focus. Angry for the amount of effort every day took out of me. I wanted to protect her (and us) from the pain that was coming. At the end of that month I met with her palliative care doctor who helped me look at Talia as a girl who still has life left in her, and not to resent her for that. “She’ll die when she’s ready. When her body is ready” she said to me, and looking at Talia I can see that she is still very much here. Her body and her mind are still here, and I simply have to take her for where she’s at in this moment, and not allow myself to think even a moment into the future.
Now I'm the third month I can look at her more calmly. I can appreciate her joy at bath time and in the pool with a pure joy only partially tinged by sadness. I can see that her eyes are still full of life. This won't be the month she dies. That's ok. She's still here, physically and mentally. She still wants more from this world. I can give it to her at the moment without resentment and many times without sorrow. I can delight in the rare laughter that pierces the silence. Her laughter is a gift she gives to me, a rare treasure that I unearth from deep inside her brain, and I’ll treasure every one.