It has been a while. I have been slacking on building that great idea that bursts with sprinkles, unicorns, and happiness. I wanted this blog to be something positive & in a sense, I think it has become an outlet. At this juncture, I have lost count of the weeks of hospital stays and doctor visits this year. I’ve never deemed myself a math scholar so chalk it up as you will; denial, refusal to accept the inevitable or poor math skills. Giving credence to poor math skills makes me feel like I have control over the anxiety that is consuming me. Today I want to scream, yell, and break things. I’m usually sentimental, but today I do not even care if the things I want to break are pretty things.
I brought Jon home from Baylor Hospital Saturday and it is now Monday. We are back at the Doctor’s office as I write. Today Blakely told him, “Daddy I don’t want to lose you again!”. How is that feasible for a two-year-old to say in context??? He is bruised from head to toe. His veins are shot. He still has a picc line. He weighs 152 pounds. I keep telling myself it could always be worse. I keep thinking how much more can one person handle without breaking and then I remember, he is still breathing. I curse PSC for which there is no official cure. I see the pity in people’s eyes. I do not like pity. I want people to look at him and know what I know in my heart and say, “Man, you are a fighter!”
Today I have said mortality is a damning thing and life isn’t always beautiful. However in the next breath, I said, it is a beautiful life. What a cruel contradiction. Despite the flaws, anger, and hate we see everywhere around us, the world is still turning. There is still purpose and meaning. I look at Jameson and Blakely I know there is more than pity. I look in Jon’s eyes and I see a reason to keep going, a reason to stay fighting mad if that is what it takes to come to terms with the fact that even the greatest fairytales are flawed. At the end of the day, I want what anyone else wants, for my family to have a happy normal and life. Then I remember what my friends at “Mama Said” tees reminded me of in their new campaign. Circumstances don’t define us. We are normal.
My tee: Wire and Honey Vaccine Save Bro
My hat: Little Stars Clothing
Blakely’s crop top: Finley and Bub
Blakely’s glasses: Hatch for Kids
Blakely’s shoe: Piper Finn Baby
Jameson’s shorts: Lili Lane
James’s socks: Neon Eaters
You did a fantastic job writing this article. My wife spent a lot of time at your great grandparents home running around with your great aunts and great uncle. Got to know Tobe when I married Ann in the 60s. Mack and I go back a long way also. Last time I saw Mack was a few months before his death at the doctors office and got to have a short talk before being called back to a room. Haven’t talked to anyone because of this virus and doctors don’t want me around public because of my lungs. We all have cell phones so if it is not someone you talk to regularly you don’t have their number. Let me tell you how sorry it was to hear about Tobe and Mack thought a lot of both of them. (never seen Mack without that big smile on his face)
Thank you for the kind words Johnny. I always appreciate hearing stories about them from people who knew them. Please take care and stay safe!