These lyrics rang true one recent night while I was driving Cel up to Dublin to stay with her Great-Aunts. It was snowing, turning a twenty minute drive into forty. She was screaming, making forty minutes feel like eighty. So I just turned up the music. My best coping mechanism has been detachment. Understand that, unlike a normal crying child who might be comforted with a hug or calmed with a sweet smile and soft kiss, holding Celia sometimes makes it worse. So I detach. Well, first I medicate her and then I detach.
Her current needs weren’t part of my fathering paradigm. Most days I don't feel like her father - just her nurse. And most days that is the easy part.
I’ve had to learn how to be a different kind of dad. This detour wasn't on my parenting map. Have you ever looked down at your GPS and realized you are off course? You're on some road that, according to the terabytes of data compiled to map the earth, seems not to exist. All you see is the little triangle pointing up and the line marking your path behind. No landmarks ahead. No turn by turn from here. All the thing can tell you is where you are. I'm there, and it's not where I wanted to be.
This is where I want to be, who I want to be...
I'm not the father I wanted to be, thought I would be, but maybe that’s part of what being a dad means.
Andy
6 comments:
I do not know you. I have never met your family. I do not have a child who is ill. I had never heard of Batten's disease. I was lead to your blog by a friend who heard of your family's blog. Since my first reading I was captivated. I log in daily to read your posts. I find strength and wisdom in your words. You have such a gift for putting into words the feelings that go with the unexpected, the loss of way, the feeling of, "This is who I am." Have you ever thought of publishing your blog in a book. I have to believe your words could help others. Thank you for this blog. I know it can't always be easy to write. I'll continue to read and pray for your family.
You were hand-picked for Celia. She is so blessed to have a dad as terrific as you and to have been placed in such a loving family. Someone told me once that God must trust us a lot to have lead us through such an incredible trial. Sometimes I wish He didn't trust us so much, but He did, and I know He is doing the same with the both of you. Press on dear friend.
"I really think that God above
Created you for me to love;
He picked you out from all the rest -
Because He knew, dear,
That I'd love you best."
--from "Tell Me Why"
we crank the volume here too. Our favorite this day sucks song is "Details in the Fabric" by Jason Mraz. It's not a headbanger one finger salute to a bad day, but it is similar in thought to your post. Some days, all you can do is "Hold your Own, Know your Name, go your own way."
Those words, like your own, they give me strength the days I just don't wan to get up, just telling myself, I just have to hold my own, and find my own way to get through this day, not someone else's way. And on the days I feel like I'm just not doing enough, it gives me the relief I need, to know that simply by being, I am doing it, I am being the mom and the nurse and making it through, and that's enough.
You guys are parenting roxkstars, we love you.
You are the best Celia-dad in the whole wide world!
Andy My Boy,
No one has a son-in-law that makes them more proud of than I am of you.
L2A4
P.S. And keep in mind...I've know you since you were a Junior Ranger!
I think your words ring true not only for this crooked, trying path you are on with dear Celia, but for life in general. We sometimes stop, look back, and wonder how we got where we are in life. Both the good and the bad places. I guess recognizing that things haven't worked out as we'd hoped or imagined is all part of the journey. However, wishing that the train would just stop and let you get off at a new spot is not such a bad thing. It's human.
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