I've shared with some in writing and in person some of my history with 'parenthood'. I recalled that when I was a sophomore in high school I wrote a paper about one of my greatest wishes in life was to be a dad. No matter what career I pursued, what socioeconomic status I attained, I knew that being a dad was the most important goal. There was a period of time in my life when I wasn't sure that goal would ever be realized. Many of you know that story, and it's not my intent to recount all of the details of that. However, it's significant to me in that last year much of my personal life was coming together in ways that I for a long time didn't expect. Lindsay and I found each other, built a loving relationship and out of that created life. Our little angel had brought about so much peace and contentment when she was born. It seemed as though we were entering a time of wonder and joy that I can safely say was not matched by any previous time in my life. I might have had glimpses of this from time to time, but to hold this precious baby in my arms...there wasn't anything better.
Early on in Delaney's trauma I was in such a state of fear. I was afraid of losing her and in some of those moments I was afraid that I was losing my fatherhood. When we were in doubt as to whether she was going to survive at Beaumont I remember I was starting to prepare myself for losing my status of being dad. As if demoted in some way. What I have learned in the past few months is that even had she passed, I don't think you ever lose your "stripes". I will always be a dad, it's part of my identity now. I suppose that my brand of fatherhood comes with it a powerful feeling and fear doesn't enter into the equation, at least not as a debilitating emotion. I would say that yes, I do feel fear. Much in the way a soldier feels fear, but it's the courage that pushes us past that emotion and helps us to conquer it.
I think about that ability to counteract fear in much the same way I ran races in Cross Country. I used to get so scared before the start of the race. I would feel the blood draining from my face, and the dry mouth, and the butterflies in my stomach. I never really knew how the race was going to play out. I would wonder if my fear would get the best of me. Or would I use it as motivation. At the sound of the gun, all that fear would melt away as I took off into the first 300 meters or so. Once I got past the bulk of the runners and into the comfortable 1st third of the pack I could relax for a moment and settle into a pace. I knew that at least I wasn't boxed in with the mass of runners behind me. I would look ahead at the runners in front and make my plans to pick them off one at a time, use my breath and timing to pass at the right moment. Towards the middle of the 2nd mile I begin to think that the race will never end, I have to fight this feeling as if I am on a treadmill making no progress. For the rush of the last 600 meters will find me soon enough. This is where I loved running, that moment when I knew that most of the runners out there would likely falter. They would allow the fear to take over and somehow find satisfaction in that they were at least "out there trying". That's when I would pounce and pick them off as I approached the finish. Sometimes the more challenging the terrain of the finish, the better I performed. I needed the pressure. I might not have been a top performer in the state, but I did reasonably well. I take that attitude with me today as we face the marathon of our lives.
If we had to put a name on the goal of what would help us to maintain our energy and focus it would be 'balance'. Each week we have so much we have to attend to, from appointments with some professional we've employed in Delaney's care to the day to day feeding, diapering, suctioning, etc.. Every week we expect to see someone from our team of professionals. Our home care nurse, Cardiologist, Pulmonologist, Pediatrician, Neurologist, Physical Therapist, Ki master, all become our teammates in this relay for Delaney's life. It requires a lot of mental organization, spiritual guidance, resources, and respite. We've improved our ability to find ways to give each other breaks and get out of the house for things other than medical care. Early on we knew that this would be crucial to our being able to sustain our energy. Like many goals this is something that we aspire to achieve. We need reminders and helpers, and what we really hope is that Delaney improves the point where she needs less and less of this medical care, that we can return to 'just being parents'...which is a big enough job as it is without all of this "stuff".
Perhaps we are starting to see more signs of Delaney coming around. I won't kid you, she has a great many areas that need improvement. However, there are some really exciting albeit incremental improvements you need to know about. Last week as she was laying on her tummy, without prompting or stimulation she kept trying to pull one of her legs underneath her as if she was trying to get her leg under for support. A crucial step toward being able to support herself and perhaps, one day, crawl. While on my chest over the past several days she has noticeably picked her head way up and turned to the other cheek (with just the littlest bit of assistance). She's been vocalizing a lot more the past couple of weeks and most obviously this past week. While we typically hear this when she's upset or agitated, it's happening more and more at other times of the day. I have this feeling that all of these little developments will synthesize into much larger sweeping improvements. We keep cheering her on and with the help of all of our cheerleaders out there I know she can overcome!
One story that I thought was short and sweet was when we went to see Sensei last week. It was a normal session and as we began to wrap up I asked sensei if he was training a lot of students for Aikido. He had said that there were a few but that it will be picking up more as school lets out for summer. I then smiled and said that I might need to return and train with him again soon. He turned to me as he motioned to Delaney, "She will come train with us one day!". I think we will be happy to take him up on that offer! If anyone can help Delaney achieve that goal, he can.
Now, I was going to get more specific with some of her medical care, but today is Father's Day. So please join me in this time to celebrate and enjoy your children. Go out an play catch, throw the frisbee, get out on the boat, grill out back, be silly...be thankful your a Father, it's the greatest job in the world!
God Bless,
B & L & d
...continuing to pray for you and wish you peace.
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