In 2004 I began my career in the medical profession – starting out right in the Children’s Hospital on the Med/Surg floor. I’ll never forget rounds and reports and quiet discussion during handoff, communicating the warning of the “difficult parent” at the bedside.
I often times was fortunate enough to care for those families. Families of kids who were our frequent flyers because of chronic conditions. More times than not, these repeat admissions had hard-core parents. Parents who stood for over you to ensure every single interaction was right. Ensure you communicated every concern to their physician. To make sure you knew how you would or wouldn’t be successful in things you could do in your sleep with most patients.
These parents were considered difficult and exhausting, but what I didn’t know then, is they were the ones who were exhausted.
Once upon a time I was nice. I was scrappy but easy going. I didn’t walk into a room and make it known I was a nurse, or knew what I was talking about. I didn’t challenge physicians or teachers. I took direction and had faith in others – then I realized,
I’ve become “that parent”.
I feel terrible. I feel sad that a physician, a nurse or even a teacher probably takes a deep breath when they walk into the room to greet me. I feel terrible that they won’t know the laid back, very sarcastic, life of the party Kristen – because she doesn’t really exist anymore. Instead….they get a difficult and exhausted mom. A mom who sometimes doesn’t know why things are happening, but knows my kid’s behaviors aren’t normal. A mom who doesn’t always know what med is the best, or treatment is the best, or intervention is the best at the best time – but knows we can’t keep living the way we are – because everyone’s quality of life pretty much sucks. A mom who sometimes sees things like fluid in ears or changes in behaviors or increases seizures – that I know deeeeeep down needs medical Attention, but sometimes I delay because I don’t want to call a doctor again. A mom who is terrified that people will think I’m crazy, that they will think I’m “that mom”. A mom who literally cries in the shower or in my husbands shoulder feeling like I’m failing and just wishes it will all go away.
I wish you could see me at my core. I wish you, doctors and teachers could see a mom who just wants it to be okay. Who has just been taken over by fear and desperation. I wish you could see how desperately I want to escape it all, but have no options but to fight because my fighting is the only thing that’s gotten us this far.
I wish you could see a mom who is tired of adding another page to the medical binder. Tired of paying another bill. Tired of adding another appointment to my already full calendar. A mom who is tired of explaining to aunts, uncles, grandparents and friends what is happening now and answering questions when you don’t know what’s next yourself. A mom who is tired of putting on a brave, scrappy exterior when I just want to curl up in a ball.
I’m sorry. I’m so so sorry I’m exhausting and difficult. I’m sorry I challenge you and question your best interest of my family. I’m sorry that I instantly assume your method won’t work, because EVERY. SINGLE. TIME. I try and try – and never see improvement. Or do – for a minute and then there is a backslide. I’m sorry I lose hope and faith in you. It’s hard to have hope and faith in someone else, when you have just lost hope and faith all together – especially in yourself.
I’m not strong. I’m not difficult. I’m not exhausting. I’m not a know-it-all. I’m just a desperate mom – of a situation and life that feels impossible, but the only chance we have to make it through – is to fight like hell to stay afloat.