Milk and Hamley: March 2013

Yes, we're still here plugging away in our home away from home. The days both drag by slowly and are gone before I seem to accomplish anything! I find myself feeling a bit like I did when Tessa was 18 months old and all my time and energy was consumed night and day. Doling out and organizing the medicine is a part time job in and of itself. But it's a dichotomous time in my life. I am constantly finding myself simultaneously struggling with the isolation from my own life, and the gratitude I feel that Tessa is doing so well and that I get spend this time with her. It's hard to know how to write this blog with all of these conflicting emotions.

If I'm honest, my heart breaks a hundred times a day. When Tessa's tummy pain wakes her up in the morning, that she still needs so much help with simple things like climbing the stairs, when I see pictures of Tessa from eight months ago and I don't even recognize her, when we go to the park and see all the children running and climbing, when children look at Tessa or even come over to her stroller to look at her because she looks different. At times I do it to myself. Looking at Facebook is one of the worst. I miss my life and my friends, but all those pictures are a killer. Tessa's peers celebrating milestones, my friends moving on with their lives.

But, as I said, this is just half of the direction that my thoughts take. For every sadness there is a celebration, no matter how small. She is a trooper, with the heart of a lion. She walks up those stairs, slowly and with help, but she never gives up. Despite all her physical changes, she is still beautiful. Perhaps more so now because of all she has endured. Her strength grows very slowly, but yesterday she rode her trike around the park almost entirely by herself, what a triumph! Tessa's life follows a different path than that of her peers, and not only is that ok, but it can be wonderful. Tessa's story has touched so many lives, but it has completely changed mine. Tessa teaches me about courage, patience, strength, flexibility and gratitude. My life has become about being of service in it's entirety, and that has forced me to let go of some of a few of my biggest hang-ups: control, expectations, rigidity, need I go on? This experience has changed everything about Casey and my lives, and most of the time I feel grateful.

On a final note, I would like to express my gratitude for my husband. He has been a source of unending support throughout this experience. Now that we are all living so far apart we miss him terribly. He is working tirelessly to support us while renovating our home to have everything in good shape for our return. Thank you Casey for all that you do. We love you.