Throughout this ordeal I have expressed my grief. I have done the best I can to put into words the amount of stress, sadness, anger, love, hate, and fear that rushes into my body each time I have written something for this blog. And on days that I have not written I have expressed those emotions in my life. Friends and family as well as simple acquaintances and strangers have seen all of the emotions that I am wearing every day. The pain that I am feeling does not go away and although it is sometimes shrouded by a facade of hope it is still there. I believe that most people who know me, including many who have not seen me in years, can see the wear that this pain is putting on me.
Robin deals with these pains in a different way. She is an optimist, sometimes to the point that she and I debate what is really going on. I admire her for this. Where I see or hear the worst cases and acknowledge those more than the best cases, she embraces the best cases almost all of the time. We cope with the fear in a different way. It doesn’t make either of us right or wrong, just different. Our lives together have been that way since we first started dating.
This morning, when we arrived at the hospital, that difference was as evident as ever. We stood by Avery’s isolette and marveled at how this baby who is less than twenty-nine weeks of gestational age remained alert and observant for more than two hours, constantly. We noticed her strength by the way that she kicked and flailed about, obviously unaware that she was about to undergo a serious surgical procedure. Despite the fact that we both saw the strength in those hours, I was the one that broke down each time her name was mentioned in the list of patients that would be transported for surgery. I was the one that felt the urge to fight off the people who were arriving to take her to the operating room. While Robin encouraged me to take solace in the fact that she was going into this surgery stronger than she had the operation on her heart, I begged God to not let this actually be happening.
Over the past six weeks people have told me that they couldn’t imagine how I (we) could be this strong and many have asked how we’re getting through it all. My answer is this: In this game of life, we do not get to choose the hand we play but we have to play the hand we are dealt. Despite the fear and the lack of strength I have been feeling, I must fight on. I cannot lay down and quit, though on a few occasions I have felt like doing just that. I must fight on, and the necessity of it all is not only for myself but also for my family. One can find a way to trudge on when such a burden is placed on their shoulders.
Yet for all of that there are some that have also been critical of decisions that we (and I, personally) have made. In more silent tones than the words of encouragement I have heard the grumbling of some that have suggested that we (I) should do this or that. The most glaring of these criticisms has come in the way that we have handled explaining the situation to Maddie. While nearly everyone has told me to my face that when the right time comes it will present itself, I have overheard other conversations in which people have said that if they were in the situation they would have told her immediately. While I should probably let this criticism roll away, I am left to wonder if those who are so critical have ever walked this same path. Have they ever faced the same, or an even half way similar situation? I doubt that most of them have, and I wish that there was a way that I could insure that no one else ever has to. Unfortunately I am a realist, though, and I know that other people will face it and will have to play the hand in their own way. I would encourage anyone that becomes critical of myself, or any other parent, to consider playing their own hand instead of trying to be a “Monday morning quarterback” and consider themselves lucky if they have never had to play this particular hand.
A little more than an hour after Avery was taken away for surgery the doctor emerged. His face was one of stone, but it always is so I was not afraid of the look. He explained that she had come through the procedure fine and that although we will likely experience rocky times in the coming days, there is no reason to believe that she will not recover. He further explained that he removed 10 cc of fluid from her head and that there was more, but due to not wanting to cause a dramatic decrease in her fluid level, he was not comfortable in removing more and that it is best to gradually remove it.
After speaking with the doctor we waited for the chance to go back to Avery’s bedside. Once there we observed that the baby who a few hours before was kicking and flailing was now laying perfectly still, aside from the motions of breath filling and emptying her lungs. And we saw the observable effects of the surgery. She has a horseshoe-shaped scar on her head and the reservoir that sits under her skin is apparent. Furthermore, the skin on her head is now wrinkled due to no longer being stretched so tightly over her skull. Her nurse explained that she was doing well.
The visit during the evening brought surprises, though. We were told, by her day nurse, to expect Avery to remain in a near comatose state for the next few days. However, when we got to her isolette she was moving her free arm and had kicked her feet under the bed role that is supposed to keep her bundled tightly. We also learned that a small cloth that was now laying on top of her brow had been placed over her eyes to encourage her to keep them closed and thus push her to sleep. This cloth had not been moved by the nurses or doctors, nor had Robin or I moved it. We are left, therefore, to know that Avery moved it so that she could continue to observe her world. After her night nurse repositioned the cloth we then watched as Avery again moved it. Robin pointed out that Avery is, after all, my daughter and should not be expected to act any differently than her stubborn father would.
If she could have a conscious choice I doubt that Baby Avie, as I have started calling her, would choose to play this hand. Nevertheless she is playing what was dealt to her, she is just playing it her way.