One More Baby Step

Surgery is over and everything went fine. She no longer has the orange tube sticking out of her head like a robot and the external drain is also history. We took pictures of it just in case she doesn't remember. Now she has yet another sore spot on her head, and also will probably be sore along her neck and in her tummy where the tube was placed. During the next few days and weeks we will know for sure if the shunt is working properly. The neurosurgeon thinks she has had hydrocephalus for awhile--maybe even since kindergarten--although I am not sure what this means. She progressed so much this year in school, it is hard to believe that she did it with fluid slowly accumulating in her brain. And yet maybe this also explains her balance and coordination issues, which I thought were hereditary since she comes from a long line of klutzes, myself included. We will never really know.

Now that this word "hydrocephalus" is part of our family vocabulary I have to take time to get used to it and better understand how the shunt will fit into her future. We have passed this milestone and I am relieved. Allison was pretty scared about the surgery today and cried her first tears. I am so glad she is able to get some of her anxiety out, and is not bottling everything inside. But tonight she was glad it's over.

We met another family today whose daughter just turned seven last week, was diagnosed with the same tumor, and had the tumor surgery one day before Allison. I felt like I was greeting a fellow warrior when the mom came over to introduce herself during physical therapy today. They are from Steamboat, and have to spend the six weeks of radiation in Denver. They, like us, resisted the shunt, but will have one placed during the next few days. I plan to help them during their stay in Denver and I hope too that our daughters can gain some comfort in knowing that they are going through this at the same time.

There are so many families here with hard luck stories. Tonight a new mom and daughter came on the oncology wing; we saw them in the surgery waiting room and now they are spending their first night at Children's. With nearly three weeks under our belts, we are like veterans. We know when to hit the showers, how to doctor the coffee, hide our stuff in the fridge, have learned the names of the many smiling faces who guide us each day. I wish I could shepherd them through but know they have to get initiated just like we did.

So many of you have weathered loss, pain, and turbulence and you have reminded us that you survived and that we will too. I have seen the pain in your eyes, like you were trapped on another world but returned with faith in life and human connections. You've moved on and have embraced so much, including a very grateful us. Why does life have to present such extremes? Why do we have to suffer so much to truly appreciate the beauty and joy of our world?

Dianna