Just a few days ago, I was planning my life forward. I looked at my calendar and saw 3 weddings to look forward to. I looked toward November wondering what adventures we would go on once Ava celebrated her 1 year post transplant anniversary.
Now, I am here. In this place again. Where only the moment counts. Only this TV show I am watching with Ava matters. My immediate plan is walking three feet to the bathroom to retrieve the bed pan. Ava's desire to eat mandarin oranges is my number one priority. The pain in her side occupies all the space in my mind leaving no room for planning for the future. Waiting for the doctors to bring news that will either devastate us or give us hope is about as far out as I can think about.
I had a dream last night. It was a nightmare really. In my dream, I held tightly to Jai with one hand and to Erika with my other. We were on our faces crying and wailing and pleading with God. We were asking that he spare our daughters' lives. You see, these women were the friends I met along the way of this horribly sad journey. They are the beauty among the ashes. And Erika, just lost her daughter to cancer yesterday. If only that part were also just a dream.
Mike is here to change shifts so I get up and walk, one step at a time into humid, balmy weather. I forget it is Summer because the air inside the hospital is cold and stale so my mind is prepared for Winter but, no, it is Summer. There is life all around me. Everyone has a place to go, somewhere to be. This reminds me of my mission. I need to go home and take a shower, to wash away all the impurities of the PICU and to wash my mind of the dark places it wanders into.
I think of my friend Jai, and the wilderness she is in right now with her precious girl, Allistaire, fighting so so hard for a chance to grow up and to experience life. Instead of running around, breathing in the summer air, she is confined to a room waiting one second, one minute at a time for this disease to go into remission. I think of Jai often and of the hell that she has been through. She has resided in this hellish place for years. (She writes about her daughter's journey at www.conglomerationofjoy.com). And even though Jesus is there holding her hand, she is indeed still in a dark place. Is this theologically correct? Can you be in Hell even though Jesus is present? I'm not a theologian but I want to understand the secrets of scripture better. Because I am a broken mom trying to stand up under this trial and not lose my faith so I need to know.
I'm passing by a homeless man and he calls out to me. It snaps me back to reality. I'm annoyed that he interrupted my thoughts but I'm also curious as to how he saw me. I'm but a mere shadow in my mind, a shell of a person. I forget that I am in this physical body that reeks of hospital smells. It reminds me that I have to keep stepping on toward my goal: a shower.
But my mind wanders again. I think of the other children. Jai has a beautiful daughter, Solveig, that she rarely gets to see because Allistaire receives treatment in Seattle while Solveig stays in Montana where the family is from. They are separated by this Cancer life and Solveig needs continue to go to school and to thrive and to live. For we must live even when others around us die. Because even though we would rather die, we must live on for those around us. That is the cruel reality of this life, that life must still move on even when other lives have come to a halt. We will still plan for tomorrow's meal, tomorrow's vacation, tomorrow's event, even when our hearts have died with yesterday's diagnosis.
And what of these other children that wait for normalcy while their sibling receives treatment? They are in their own abyss, calling out for their parents, their family to come back. It is like all the children are thrown to sea, and thankfully some have life jackets on. Who will I swim to but the one that is drowning without any salvation in sight? I will tread away from my other screaming children, praying that God protects them, while I race to rescue the one that is alone and dying. But I shout back at my children tossed by the sea, that I will return. I promise that I will come back for them.
I've arrived at the RMH and I am met by an overly excited Gwen. She attaches herself to my leg and doesn't let go. I convince her to let me take a shower but first I lay down to nurse Jude. He has just arrived home from spending the night at my beautiful friend's house. She gave me the greatest gift last night: safe harbor for my youngest one. I nurse him and relish the round part of his head and even the flat part that he has developed from hours of laying down neglected while we pace about helping the kids that are more vocal.
Then Gwen begins to speak to me.
"Mama, I love the coconut ice cream you bought me. I only ate one today. But I love you more than I love the coconut ice cream."
Then she begins to lean in close to Jude.
"Gwen, be careful. You are still sick. Please don't get too close to the baby."
"Mama, when I get all better, I will kiss you and kiss everyone. When Ava gets better, we will all go back home. We will all be a family again."
I digest this sentence and pray that it would be so. I get ready for my shower and slip into my porcelain sanctuary. I sigh a sigh of relief. This time is for me; it's all mine. Then I hear a knock.
"Mama, can I come inside?"
Of course, she wants to come in and spend time with me even if we are separated by a curtain. She peeks in.
"Look at all that soap on your head, Mama. Where is that shampoo from? Did daddy bring it from home? Ow, I hurt my toe on this tub. Are you going to say, 'Be Careful, Gwennie?' I don't even know what I am saying, Mama. I'm just talking and talking."
But I know what she is saying. She is asking if I hear her. If I see her drowning in the dark waters. We are looking to the shoreline together and we can imagine reaching it and she has on her life jacket. But she is scared and she needs me too.
I'll allow myself to make one plan outside of this moment by moment living, and that is to get back home. We are waiting, waiting, waiting, in this seemingly endless black sea.
But don't worry, my sweet girl Gwen. I hear you calling. Hang on tight. I will come back for you.