Big Conversations in a Small Room

It was a Friday morning, 7 years ago.

We were nervously sitting in a tiny exam room waiting for her doctor to come in.

She was 9 years old.

Her first surgery was 18 months earlier.

I don’t know what I was thinking. I think that I lacked the capacity to think. I was naive and, I will use the word arrogant. … I thought that the previous surgery was all that she would have needed to treat her vascular anomaly. Even though I was concerned about the “bruising”, since it was in a different part of her leg, I think I thought that it was not the same as before.

Her surgeon came in and examined her. I explained that her pain (in a new part of her leg) is what prompted me to make the appointment. In a casual and calm manner, the doctor affirmed that she needed surgery and that we should schedule it for Monday morning.

It was Friday…and she needed surgery the next business day, Monday. I left like I just filled out a UPS or FedEx delivery slip. I agreed to a guaranteed delivery of my daughter by the next business day.

I recall my daughter and I being so stunned and caught off guard at how the conversation had escalated so quickly.

As I was helping her get dressed, in her small voice I heard her say, “Wow! Such big decisions are made in this tiny room.”

Here I was, 7 years and 16 surgical procedures later, speaking with the same surgeon in the same tiny exam room. This time my daughter was not with me. I felt that I needed to protect her from this particular conversation. I knew that I was about to ask some really hard questions. The kind of questions that would lead to difficult answers that neither she or I were ready to hear.

Some may agree or disagree.

Yes it’s her body.

Yes it’s her treatment plan.

And I know that one day I will not be there to buffer her difficult conversations with her doctors. But for today, I felt that I needed to process whatever her surgeon would say before I overwhelm her.

In hindsight, I really feel that I did the right thing.

After giving her surgeon an update on how she was managing with the pain, at school and in her social life, my mouth opened uncontrollably and the questions came out in rapid succession.

“What is your end game?

What is your discharge plan?

As my daughter’s surgeon, I am asking you what can be done to help with her pain? Because when you tell me that you cannot do anymore surgery, my brain and heart hear something different.

My heart and brain hears you saying that you are done treating her. All I hear is that she will continue to live a life of pain, with no treatment or remedy in sight. Is this it?

He looked to the floor with his sad eyes and said that really there is nothing more that can be done. Not by him, not by anybody. He said that the only thing we can do is wait and hope that someone, in the near future will come up with something to help those with this condition.

Once again, I found myself stunned at how the conversation had escalated so quickly.

I think that both the doctor and I left that room just as disappointed, sad and scared as my daughter did 7 years earlier.

On my drive home I agonized over how I would find the right words to tell her as her words, from all those years ago,

weighed heavily in my heart.

Big words – small room.

What do you do when the doctor says no more treatment; just sit back and wait and hope for a better answer?!?!?!?

Meanwhile, I am sitting back and watching my daughter live in pain….

#devastated #holdingontohope #fava #fibroadiposevascularanomaly #vascularanomaly #chronicpain

I didn’t realize they didn’t know.

About a year and a half ago, I had a very eye opening conversation with my young, teenaged daughter about her condition. During our convo she said that she felt like her body was falling apart on her. Her leg, her veins, her stomach, her liver and her bones. I explained to her that her dad and I work closely with all her doctors to monitor the changes her body has been and is still going through. I started detailing every minutiae of what we do to keep her healthy. The part that made me say wow was when she asked: “Why haven’t you told me about any of this before? I have been so worried.”

I told her “It was never my intent to keep any of this info from you. You are right! You need to know all this stuff, like the fact that I insist that your pediatrician do a liver function test every year at your annual physical because I am concerned about all the ibuprofen and acetaminophen you take to manage the pain from Klippel-Trenaunay Syndrome. But all these decisions were made a long time ago, before you could understand what was going on. I guess I never realized that I never really explained it all to YOU.  I guess I figured that you already knew because we have been doing it for so long. It’s like when you were surprised that I know some rap songs, really well, like Rapper’s Delight by Sugarhill Gang. It’s a part of MY history, and I kind of forget that you weren’t a part of that. I am sorry that I didn’t have this conversation with you sooner..”

And then I needed to have the same conversation with her twin brother.

So my take away is to keep talking to my kids. Keep explaining. Even though they are the reason why we do what we do, they don’t always know why. And maybe it’s because we, as parents, made these decisions about their care long before they could understand what was going on, but I need to remember that they are getting older. They may look and act like they may not “get it”, but they do. And apparently, they have been harboring all this extra anxiety about their own bodies and conditions. They need to know that they are not alone. And they need to know what measures I am taking to keep them both healthy. This growing up business is hard.