Being a parent of a child with a life-altering disease has many challenges. Lisa and I are a part of many FB groups with other parents of kids that are also affected by the same disease. These groups are very active on a daily basis with new people whose kids are newly diagnosed. The Questions often out way the answers, as there is no cure, no known cause, and no predictable outcome from one person to the next.
Brogan was diagnosed before his first birthday, with this disease that neither Lisa or I had ever heard of. Alopecia. Fear was a common feeling. Fear of the unknown.
But the fear did not start with the diagnosis, the fear started when we first noticed a half dollar sized circle of hair missing from his head.
At first, we hardly talked about it, to each other, or to others. We put blinders on. We rationalized that that spot would grow back on its own.
As time went on the one spot turned into two, and then … and then.
If you don’t’ already know. When it comes to illness, symptoms. GOOGLE is NOT your FRIEND!
Still kind of ignoring the fear, hiding from the fear. Brogan had a regularly scheduled pediatric checkup approaching. So, we briefly discussed that we would both go to the appointment and ask the Dr then.
Funny thing is. The nurse comes in to do the check-in, bp, and other routines… Neither Lisa or I say a word about the hair.
Now waiting in silence for the Dr, the fear really starts to set in for me. What if this is a side effect of something horrific, or life-threatening, or, or…
The Dr comes in, goes through his normal protocol. Checks nurses notes and starts the exam… Still, neither Lisa or I say a word about the elephant in the room. Our baby, with more shiny circles on his head than wispy hair.
“What is going on with the HAIR?” says the Dr.
The tone from him was actually a relief. Kind of light-hearted.
“Did his brother have the clippers?” with a chuckle
Lisa and I, look at each other and say NO, we are hoping you can tell us what is going on.
We had a brief discussion and the doctor says,
“it appears to Alopecia, but get into a Dermatologist to get it checked out”
The fear. Still most certainly surrounds the preliminary diagnosis. But the fear is changing. Fear is shifting.
We all suffer from fears.
Like most people, I am afraid of heights. Sort of. I usually tell people that I’m really not afraid of heights, just of Falling, LOL.
Fear is part of human DNA. Without fear, we would have been eaten by tigers. So, fear is actually a good thing…. It just depends on how we deal with our fears.
Just yesterday on one of the alopecia parent groups, I jumped into a discussion about dealing with a diagnosis of a young boy and the potential of homeschool. At the end of my post, I had these 2 paragraphs.
“There are no good answers, AA sucks. I wish I could take it away from my son, but I realized early in this journey the best way to protect him was to build him up and make him as strong as he could be mentally, physically and emotionally.
Please don’t teach your son to run… teach him to stare his fears straight in the eyes and then move past it on his way up the ladder.”
To which one of the fellow Alopecia (AA) parents, Kelly, responded …. ”Mark I love your response so much. Thank you. I needed to hear this today!!”
Fear is inevitable! Fear is necessary! But how we react to fear is where the magic happens. And being apart of a community of people in similar situations is a way to relieve some of those fears if you let it.
Since I started IMPACT CLUB four months ago, I have immersed myself in the fundraising community within the Region. There are lots of great Charities that have been nominated in each of first two events. Many of which I had no idea about, and many other mainstays in the Region.
Recently, I was notified of a fundraiser that United Way of Lake County is putting on.
Over the Edge.
The challenge. To Rappel off the side of the Centier Building in Merrillville. YES, over 80 feet. I’m getting butterflies just thinking about it. Check out when I talked to Kealah Parkinson about controlling fight or flight http://tritown.localadvicegivers.com/023-coach-kiki/
The main goal is to raise money for United Way.
My secondary goal is to face my fear of heights and move past that fear on my way up the fundraising ladder.
I’m looking to add a few people to my Rappelling Team named IMPACT CLUB. We are also looking for people that want to donate to our team.
Come face your fears with me.