Wednesday, July 16, 2014

Summer Vacations, Field Trips and Medical Procedures...

Field Trip Selfie at NIH...

For the last two years, on one of our extremely hot summer days, I load the Beauties into our dirty minivan and we road trip to NIH (The National Institute of Health: Clinical Center). It is a 15 minute drive from our house. I check the Beauties in at the gate and they get awesome visitor's badges, they go through the metal detectors, watch the car get tested for explosive devices and then we drive on campus. They love this day. According to Norah, "It's the best cafeteria in the world" and she also said, "Yep, I really think I could work here one day!" and Ian "loves the architecture and design of the building".

We look at the photos of the Presidents who have visited and compare notes on the exotic fish in all the fish tanks. I show them where I get my blood drawn or where I have received various treatments. It is an all access pass.... The day we go is always a day that I put on make-up, a pretty sundress and feel good. I want the children to see me at my best.  Today we went to pick-up some medical records, but we also scored lemonade, sandwiches and some tasty chips. Then I watched them as they went around and around in the revolving front door at the hospital.

It was a fun day. Hard to believe, but it was...

And it was supposed to be. We are in the business of educating and de-stigmatizing the experience. I own this conversation, I shape the dialogue, I guide with my hand what the Beauties' understand about my disease. I own that... So I frame NIH as my place of wellness, it is the place I get better and so it should look like a fun place, a happy and safe place.

Norah suggested that Jeff and I go there for a date night. It looks like the lobby of a grand hotel!

Make no mistake, it is a hospital, the inhabitants are very sick, and for many it's the last stop. But that doesn't mean that it shouldn't be a place of great hope; and that is what I have made it for my family--a place of hope.

I mention this day for two reasons. One, I get to talk about my fantastic Beauties! But more importantly, I can share with you how I frame the tough stuff.  My children aren't shielded from much. Not the divorces in our family, not the mental health struggles of loved ones, not the horrible case Jeff sat on as a juror this week. Nope they get a ringside seat for all of life. Almost everything can be explained to the children in age appropriate language.

This past Friday, we picked up my mom and took her for an endoscopy. This was Norah's second time, we had done it a year ago when she was 7. This was Ian's first time. So we are in the car driving to pick-up grandma and I start to remind Norah and explain to Ian what the day entails. We have electronic devices charged, water bottles and some chocolate stashed, we all ate a huge breakfast and were ready for the day.

I explained that we would be in a doctor's office, and back behind the waiting room would be a hospital, filled with gurneys and medical devices. But before I could explain to Ian the set up, Norah speaks-up, "Mom you drive, I've got this" and then she begins...

"So Ian, Grandma needs to have a camera put down her throat to see if her throat and stomach are healthy. But you can't put a camera down your throat when you are awake. So the doctor gives Grandma medicine that makes her fall to sleep.  When she is asleep, she is also monitored for her heart and breathing with a pulse-ox like mom's and a blood pressure cuff. But she is going to be just fine, she has no chance of dying because she and mom have done this A LOT. And the doctors are there to keep her safe."

Hard to believe, but I just read it to her to make sure the quote is correct. My ever technical daughter said, "Good."

As I drove, I witnessed my daughter offer bedside manner from her booster seat in the back of my mini-van. I almost cried as I listened to her, thinking that some future patient is going to be blessed by this childhood- blessed that my Norah has been on this Pilgrimage with me.  As she lives with my chronic disease, she has been honing her skills from an early age. This is how you frame life's horrible truths. You realize that someone else will benefit from your struggle. We are paying it forward in the most unorthodox manner.

Norah also talked about the wires and beeping that you would hear, and that while it looked scary it is all safe. I also explained that Grandma would be super hungry because she hadn't eaten and that I thought she would treat us to a tasty lunch. (which she did!)

When we saw my Mom she was fine, antsy to get going. The nurse was nervous about Norah wanting to read the report with the photos of mom's esophagus, duodenum and stomach. But Norah was all in, Ian was sitting in the chair playing on the DS saying, "Grandma, I'm just glad you lived." More on Ian's version of this trip in a later post.

There we are in post-op, in the the equivalent of an ER, I have my beautiful anxious Aspie, my junior medical intern and my mom who is a little stoned and ready to roll... Trying to keep them all organized, managed and comfortable was my challenge for the day!

So when I say Norah is going to be a doctor, I'm not kidding, she wanted every detail. She watched the vitals, we had to talk about if they were high or low. While sitting on my lap reading the report she is watching the nurse pull out the IV. Norah was enthralled.  The nurse was worried Norah would faint. My mom said, "Ah no, she helps give her mother shots." The nurse was gobsmacked. Not the right choice for every 8 year old, but good for my daughter.

I have too many gems from both these trips to share today. I need a whole post on my sweet Ian's worries about my mom's procedure and perhaps another on the challenges of raising two divergent beautiful souls.

I try my best to use every opportunity to teach, to guide them for the future. We work through situations with training wheels so that when adulthood comes-- all too soon with too many challenges for anyone, they will hopefully have the skills and ability to take off their own training wheels and pedal on without me.

Peace be with you,

Photo Credit: PilgrimageGal


  1. My 3 year old had heart surgery when he was 7 weeks old. He's perfect now, but we'll forever have to go for check-ups. He now has a little brother and eventually we'll be explaining to them both and they'll be exposed to all the sick children at the children's hospital. It's incredibly sad at times, but it's a real part of life and I want them to know what really happens.

  2. Kudos to you, Mom, for de-mystifying (and clearly de-terrifying) your NIH trips for the Beauties. Can't wait to read about Ian's thoughts too!

  3. Christina... Thank you for sharing your journey with me, you too have a place of wellness to share with your boy's-- what a gift. xo Kathryn

  4. Thanks Introvertster... you always make me smile! Ian's thoughts soon promise!