Wednesday, October 8th was the fateful day we heard the news. I was at work, checking my phone between each reading group. No new messages. I kept pushing forward, group after group, hour after hour. My last group, done. No new messages. I call Emily.
She says she spoke with Dr. Angle this morning and has been meaning to call us. I already know. You’re not going to wait all day to deliver the best news in the world to a family; you’re going to wait all day to avoid the worst news in the world.
She goes on to say it’s not the results that they wanted to see. His copper levels are super low. She says this still is not a diagnosis; copper levels can be off in infants.
This is where my hours of becoming a Google doctor will pay off. I say I understand what you are telling me, but according to my research all copper levels should be stable after 6 weeks of age. TJ is 16 weeks old now. I ask and tell her, TJ has Menkes. She says no, it’s just not the results they would have liked to have seen. I tell her, TJ has Menkes. She says, yes, TJ has Menkes.
Breathe. No air. Breathe. No air.
Emily: Dr. Angle will be available to meet with you and Tom anytime tomorrow or Friday (The man who is booked through 2015 can meet with us at our earliest convenience, TJ has Menkes).
From the floor of my office, from the depths of my soul, I call the one person who I need. “Tom, TJ has it, he has Menkes. We need to go get the kids, we need to go now. Where are you? We have to go to the park and play, it’s such a beautiful day.”
To the lady at the park who looked at my family that day, I forgive you. Yes, TJ was not dressed appropriately for that fall breeze, yes my daughter was eating a Happy Meal, yes my husband was on the phone, yes I was in a daze. But I forgive you. Before my life changed forever I may have passed the same judgment. Now I know that sometimes a mom buys her kid a Happy Meal simply because it’s called a Happy Meal. Our baby has Menkes; can somebody please get us a Happy Meal?
I love you little guy! Let your faith be bigger than your fears.
P.S. Menkes, you picked the wrong family! The Awareness Warriors are out with a vengeance. We are going to take…you…down!