I'm listening to a sound so unexpected this morning as I sit in the family room trying to convince myself that I can in fact make it through today. My heart is anxious although I've told myself not to be. My nerves are jumping around inside of me making my stomach knot up although I've told myself it will not change the decisions being made one way or the other for me to make myself sick. There is a tiny songbird sitting on the patio singing like its a sunny spring morning rather than a day in early January. At first I thought it was on the television so I looked up to see what commercial was on. It wasn't coming from there. As my eyes scanned the windows on the french doors I discovered this concert was coming from the tiniest little bird perched on a chair sitting on the patio. It is so interesting to see him there. He is singing. Not just tweeting a sound here or there, but his head is thrown back, beak lifted skyward, and the song in his heart is coming out loud and clear. I've been watching him for what seems like forever just wondering what he is so happy about this morning. Some where in the midst of his singing I've begun to smile. His song has lifted my spirits. I think he was sent here this morning to encourage me. I really do.
Ashley Kate is lying her bed playing with her dinosaur, listening to music, and reading books. Its her early morning routine. As the kids begin to move about the house and we go in to do her morning cares she begins making her requests. Dinosaur, listen, book. Same thing every morning. After a while she drifts back to sleep until I have her morning meds ready and then I get her up and ready for our day. This morning we are driving to Shreveport to see her local surgeon and she must know that although I don't remember telling her because she pointed to her pumps, signed backpack, waved bye and then signed car. I laughed at that girl and said we were'nt ready to go yet and she snuggled back down under her quilts.
Today is the meeting of all four transplant surgeons. Today is the day they decide if they are all willing to take Ashley Kate on as a patient again or not. Its an all or nothing decision. Since they share patients, each one taking a turn as the attending a week at a time, it has to be unanimous. I'm not so sure its going to be. I hope it will be, but its not a guarantee and after the conversations had between us last week I came home wondering if in fact they would agree to re list our tiny girl or not. I don't actually expect a phone call from them today informing us or anything. I just know that this is the day. The day of decision. Just that knowledge has my stomach in knots. Its so completely out of our hands. We don't get to decide anything until they say yes or no. At which point Dave and I have to say when and perhaps even where if they deny her.
So many people have wondered if we have asked Ashley Kate what she wants us to do. I'm going to be totally honest with you and say that baffles me. A question like that makes no sense to me. Yesterday I sat thinking about that for a long time and the best response I could come up with was this, "Would you ask your 5 year old to make a life or death decision?" Really think about that for a moment. If you have a 5 year old, or have ever had a 5 year old then you are welcome to answer that for yourself. If you haven't then please don't answer it because you really have no idea what you would do. No disrespect intended. I just can't think of a single reason why anyone would place a decision of such magnitude in the hands of a child who has no concept of what life and death are really all about. If she were 12, maybe. 15 absolutely. The facts are that she is 5. Another fact is this, Ashley has some developmental delays. If I were to say "transplant" she has no idea what I'm talking about. If I say "hospital" she still doesn't get it until we pull up to one. Why would I say to this sweet girl, "Do you want to live or die?" Even if she could grasp the meaning of my words she doesn't have the maturity to make a decision like this. I'm not trying to be disrespectful. I'm just shocked that people think she should be able to make her own decisions at her age. I'm really shocked. I wouldn't allow my 5 year old to decide what outfit to wear on a daily basis much less decide if she should live or die. Maybe I don't get it or maybe I just parent differently than others, but this is not a burden to lay at her feet. Yes, I know she is the one who must endure the pain and the struggle, but when she is 15 I think she will be glad we made the decision to give her a chance to live. I just believe that she will.
Anyway, Dave and I want Ash to have a chance to be 15. In all honesty I want her to have a chance to be 6. We know that for sure. What we also know for sure is that if we don't try she never will be given that chance. Its not a decision we have made lightly. It torments us. We don't sleep at night, we are often found unfocused and dazing off into space as the weight of these decisions overcome us at random times day and night. What we don't know for sure is when. Do we want her listed immediately or do we want her to be allowed to enjoy her days at this time since she is "stabilizing"? How large is our window of opportunity? When will it start to close? Do we jump when they say, "ok" and sacrifice precious time with her now with a possibility of losing her at any moment or do we ask them to hold off for a few more weeks or months while she enjoys being a little girl in her home? This where the struggle lies. What is the right decision? Who can guide us? Who knows what the right or wrong answer is? I only know of one who holds the answers to those questions and its not always easy to figure out what He is guiding you to do. Are we ready to give up her sweet morning hours of playing and reading in her bed for morning hours spent listening to the hum of a ventilator and the beeping of the monitors? Are we ready to have her smiles and giggles replaced with tears and grimaces? Are we ready to risk her life not knowing if she will ever make it back to our home?
This and so much more is why I feel the way I do at this time. Hurt, confused, afraid, stressed, and yet still so grateful. As I watched that tiny bird pour his heart out in song a few minutes ago these thoughts came to mind, "He takes care of him. He put a song in his heart. He cares for that little guy." I was encouraged by that. How much more does He care for our Ashley? How much more will He take care of her?
On one hand I am afraid to trust Him with her life once again. On the other hand I find great comfort in the knowledge that I would want to trust no other. What better hands to place her in than the very ones Who created her? Encouragement? I think so.