So, Are You Nervous?

While doing her percussion treatment last night Anna asked, "So, are you nervous?"

"About tomorrow?" I asked. "No, not really. I am not the one on the hot seat. Actually, I am relieved that we are finally doing it."

"Yeah, I'm the one that is to be poked......." Anna responded.

It is early, 4:45AM that I am starting this post. I got up to write because I realized that yes, I am nervous. It was hard to sleep. I would wake up with not feeling great, buzzing in my stomach, agitated. Finally I decided that I might as well get up. I have to be at Anna's at 7AM ready to go. She is getting up at 6AM to do nebulizers, etc. before I arrive to pound on her. We will leave the house by 8:30AM while Anna is fasting to get to Stanford Hospital by 9:15 to register. The transplant evaluation begins today.

After she registers Anna will have blood work done. She is nervous because her dear little veins usually try their best to hold on to her precious blood. Others can have their blood drawn through their ports but Anna's port-a-cath in her chest also is stingey and will only receive drugs into her and will not allow blood to be drawn. My mother had small veins as well. That is just one familial connection....

At 10AM until noon Anna, Sara, Casey, Doug and I will be meeting together with the transplant social worker to be assessed as her caregivers. One of the important elements of this process and being accepted is having a support system that can help you get through it. If you do not have an adequate support network then transplant will be too difficult, may prove unsuccessful and a patient can be denied the surgery. They already know that Anna and I are tied at the hip, a loyal, faithful and hardworking mother, daughter team. They also know that Doug, Sara and Casey are there too, to love her and help her as needed so this is a formality. It is also a way that we begin this process together showing our support and love for Anna.

This feeling that I have while waking, while typing. My body knows what this is all about. My mind has to catch up. I think when there are things that are just too much to really deal with the body finds an escape valve. Okay, I tune into my yucky feeling, my tummy, my anxiety. This is it. This is the end stage of this disease. We are here. You only get a transplant because you will not live much longer. That is one of the other stipulations along with a support system. How can I access those tears? I have worked so hard to keep my darling from this place. I worried about her; I spent sleepless nights; I sat with her for countless hours in the hospital; I have had her as the center of my world for so long to save her. There are the tears. I hope that I can find some release before the morning begins.

I am afraid, yes, Anna, I am nervous. I want the world for you as I always have, as your dad and I always have, as your sister does and your sweet courageous Casey does too. We all want the world for you. We want you to have a simple morning of waking up, rising from your bed and just simply, very simply starting your day as you want to. No more aerosols, treatments, coughing until you are totally out of breath, tubing in the nose and denial of the refrigerator because if you eat you will throw up so you have to wait for hours. I want to see you and Casey go on a vacation and play in the turquoise blue ocean and laugh and live like others your age do.

Yes, I am nervous and I am sad, so sad that you have had to endure so much. The rest of us breathe as we should. We want you to too. You are so brave. You have this to face. So much, so much. Your evaluation begins this morning but as you said we will finally move from the waiting until we can be waiting, to WAITING. Waiting for the call and working hard to keep you as well as we can with all of our energy and love. We know that you need us. We need you too in our lives. We need to see you with a smile when you wake up and can breath. Oh my, the tears of joy when that happens. That is what is keeping us going. This is the focus for our thoughts after the escape valve releases.