I knew it, but knowing and hearing are two different things. I knew there was no treatment. Dr. Angle says we’re trying to get TJ into a copper study out east. I’ve been in contact with a Dr. Kaler, but he’s in Italy at a copper conference. He sent me some paperwork for you to look over and you can talk to the nurse in charge.
I know you wish you had more to offer Dr. Angle; you are my favorite doctor ever. You figured out what was wrong with my son. But look who’s sitting next to you, the palliative care team, the soothers of pain, not the curers of disease.
Thank you. We will listen to what Dr. Kaler has to offer. In a week we will hear the sorrow in his voice as he delivers the speech yet again. I’m sorry it’s too late for your son. That’s not to say he won’t let us try. He’s a kind man, he’ll let any family try the copper injections. He won’t even make us join the study, we can just try. Thank you Dr. Angle, we’ll listen to what he has to say.
Now it’s the palliative care teams turn. No, we’ve never had a Menkes patient. Yes, we understand your goals for your son’s care. We are here to help. We’ll be in contact next week to set everything up with Hospice.
We talk forever; I can look back on the day and hear the Peanuts teacher talking. I’ve been told you should bring a tape recorder to these kinds of meetings. I don’t need one. I never want to hear that conversation again. I was there, it happened; I was conscious and educated, a real advocate for my son.
People say advocate for your child. I get it; it’s ingrained in my vocabulary as a teacher, a sort of buzzword around town. But what about when your kid is the only one? How do you advocate when you’re not a doctor, but you know more about your child’s disease than any of them that are assigned to you. How do you advocate when there is no answer that makes it better. I don’t know, but you do.
Here’s the rest of what I do know. If you ever have to walk in my shoes, educate yourself. Learn everything there is to know. Ask lots of questions. Recognize that most of the time you are the expert in the room. Make decisions ahead of time, but then be willing to listen to alternatives. Do not get pushed around. Stand your ground. Challenge simple answers given by simple people. But most importantly, be kind to yourself. It is not easy to swim in uncharted waters. It is not fair that these shoes even exist, someone has worn them before you and someone else will wear them after you; you are not alone. Oh, and you can’t always change your mind. That seems odd to say, but it’s true, so try to get it right the first time. No pressure.
I love you little guy! Let your faith be bigger than your fears.
pal·li·a·tive
ˈpalēˌādiv,ˈpalēədiv/
adjective
(of a treatment or medicine) relieving pain or alleviating a problem without dealing with the underlying cause.
"short-term, palliative measures had been taken"
synonyms:soothing, alleviating, sedative, calmative; for the terminally ill
"palliative medicine"