It was 2 days before Christmas and he had followed me out to the van as I packed the bags in the back. Anyone driving by would just assume that we were heading out to celebrate Christmas with family and friends, excited to arrive at our final destination to be welcomed with holiday cheer. What they didn’t know was that I was leaving my 2 youngest children just days before the one day of the year they look forward to more than any other to take their older sister to the hospital, a long 3.5 hours away with no clear answer to when we would be home. He was so close behind me that when I turned I had to catch him from falling over and as I put my arms around him, he asked that question I didn’t want him to ask …
Is Elizabeth going to die tonight?
This 9 year old who should be sneaking out of bed, shaking the presents that belong to him and counting those that belonged to his siblings to assure that everything was the same; this little brother who still believes in Santa and had spent months carefully crafting the perfect Christmas list had no concern of Christmas being only 2 days away. I gave him a hug, just a little longer than I normally do and told him no, that the doctors were going to help make her better. I wish I believed the words that were coming out of my mouth that warm December afternoon.
The Neurosurgeons were waiting in the ER for us, this was a scene I did not like to walk in on. It meant they were concerned, more than they let on over the phone when I had called to let them know she was getting worse. They know my dad, her grandfather and they know that I know more than I should. I’m not their typical mom and they have come to respect me for that. They talk to me like they would speak to their colleagues and when I ask questions, they know they are the right questions to ask and take the time to answer me.
We spent 15 minutes in that hospital room. That’s all it took and I was back on the interstate heading West. She was going to have to have surgery to repair a leak, a leak that even I didn’t understand. A tear in her Cerebral, leaking fluid from the brain into her spine and pooling down into her abdomen. Okay, fix the leak that night and we could be home Christmas Eve. Ambitious, I know and completely out of the question. He knows me, knows that I never leave her side, that I do the nurses job for them and he tells them ahead of time to let me. When rounds are made I stand in that circle with the doctors and nurses, listening and he always refers back to me and lets me ask questions and gives me the opportunity to speak about her care. Because he knows me this well, he knows that I had already planned the surgery, recovery and discharge. It was like someone shaking you from a bad dream and I heard him say this is not going to be easy, no in and out this time, Pam. One week, minimum in ICU; withdrawals, overdoses and very intense, invasive surgery. Then he said go home, celebrate Christmas with your family, let the kids have fun with Elizabeth and I will see you back here Sunday evening with surgery scheduled for first thing Monday morning. He told me he knew I would have her back if anything changed over the weekend and felt she was stable enough to wait. I gave him the look, the look that told him I knew the real reason he was sending me home.
You know the risks. I want you to go home, have Christmas and be with your family. You know the risks …
It was 1am and he was still awake. He met me at the garage door, hugged his big sister and told me he had made a new Christmas list, wondering if it was too late for Santa to get it. The list that once laid upon a pile of papers on my desk, the one that took up an entire page of the newest and most popular toys had been replaced with a wish that he had never wished before, at least not out loud. He didn’t want me to show his brother or sister, he said it was just between us and Santa. I dreaded Christmas morning when we all woke up and his Christmas wish didn’t come true. How do you explain this to a child who still believes? Santa took care of that for me and left a very sweet letter for Alex, telling him that he was such a good brother and that sometimes we just have to wait for some of the things that we really want. Alex and I never talked about it again, but I know that he will make this same wish for years to come, even long after he is too old for Santa.