Kennedy's Village

The hubby and I love NBA basketball. Living in the Detroit area, we have not had much experience lately with our home team making the playoffs. So, while I wait for the Pistons to make their way back on top, it’s been interesting to watch players leave their teams for other teams throughout the league that are in playoff contention.

I don’t recall there being this much player-driven staying or trading until recent years. I’ve heard some people say there was a different type of “competitive spirit” in the past.

I’m not writing a think piece on whether the old way or the new way is better, but these trades and free agency moves remind me of the decisions families have to make to find the best medical treatment team for themselves or their loved ones.

These decisions are even more difficult when you have a loved one with a rare and/or chronic illness.

The team selection may be limited depending on where you live. Some people travel for hours to get to his/her treatment team. Heaven help you if you have medications to pick up that only limited pharmacies carry.

Unlike the entertainment of sports, these changes aren’t entertaining, they are challenging and life-changing choices. 

Before Kennedy’s first birthday, she came down with a fever every two months and every two months we had to navigate the pros and cons of the hospital and her treatment team.

Around May 2017, Kennedy was 10 months old and the reality hit that a major part of our treatment team was going to change — we were going to lose our doctor. At the Sickle Cell Clinic, our doctor was in charge of babies until they turned one year old. Kennedy’s first birthday was coming up and once we began to face the fact that we would lose our doctor, the power of the cons started to outweigh the pros.

We, like the athletes we watch had to choose. Even though we thought the best choice for us was to make a change, we were uncomfortable changing. Let’s face it, sometimes we choose to stick with certain situations not because it’s what’s best, but because it’s in our comfort zone.

The fear of the unknown. I think instead of people saying they fear the unknown and that’s why they will stay in a situation, pride takes over and requires us to dress it up with things like: “I’m being loyal,” “It’s not that bad,” or “I don’t need all that.”

Sound familiar? These false truths are easier than facing ourselves and our true reality.

If we are not careful, we sometimes think there is something wrong with the people who do step outside of their comfort zone. Finding fault in people who have moved, tried holistic care strategies, changed jobs, gone back to school soundslike: “He has changed,” “She’s arrogant,” “He is acting like someone else,” or “I remember when she was…”

Sound familiar?

To stay or leave? Both choices are difficult. I’ve stayed while watching others leave because it was best for me. I would imagine that those who moved on did so because it was best for them. I had to realize that people moving on did not mean there was something wrong with me or the place I was in. The place was not a fit for them. And that’s ok. Change is ok even if you’re not the one changing at the moment.

In our case, when it came to picking our treatment team, we decided to explore free agency. We are grateful for every kind nurse, doctor, and positive staff person both inpatient and in that particular clinic. We learned a lot and met some great people. We are even grateful for the “con” experiences because those taught us lessons as well.

Our new team isn’t perfect. No one is perfect. I still have to pull out my advocating mom superhero cape every now and then. But in this season of Kennedy’s care, it’s the best fit and we’re glad we stepped out of our comfort zone.

But we stepped out of our comfort zone to find the best fit for our daughter.

Comfort zone can be the enemy of growth. Step out of comfort and who knows, you may win a championship.