"Out of Control"

When does control end and acceptance begin?

I don't remember much the day Paisley was diagnosed. But, what I do vividly recall is learning her condition wasn’t something that could be cured with medicine. Mastocytosis was now a part of her. This news made my heart sink and my head spin. I was numb. To be honest I didn't hear what the doctor said next. My thoughts were louder than his words. He handed us a few papers and sent us on our way. I went home and immediately began searching for information on her diagnoses.

I wanted to know something -ANYTHING- that would give us hope that our daughter's condition was curable. This was NOT going to be her way of life. I was frantic to find answers.

But everything I found stated there was nothing we could do. Day in and day out, I searched the internet. I just kept thinking this could not be happening. Is this deadly? Would I see her grow up? I had so many questions but no answers. My world was unraveling.

There’s no other way of putting it than to say I became a "control-freak".

It didn't matter that my husband was right beside me, every step of the way. It didn't matter that he listened to my complaints and concerns. His optimistic attitude didn't matter either. I would NOT accept my child's diagnosis. I would NOT accept that our lives were altered. I took things into my own hands.

I was fearful of Paisley getting sick or having a reaction. I didn't want to face people's stares so we stopped going to church. I strategized when we would go to the store. I dodged friends and family. I basically barricaded our family indoors.

In the midst of a crisis, I believe there are times we don’t recognize that control can oftentimes be a catalyst of another emotion. Out of fear of being hurt, I built walls around our family. I was hurting for my child. The thought of the unknown about her future and her condition made my stomach churn. I thought the walls I had built would magically protect our daughter. I thought it would protect our hearts from strangers reacting but all it created was isolation. Isolation from people we love and watching Paisley create bonds with others. We decided that we didn't want Paisley to fear her future and we were teaching her to do just that by our actions.

Control can hinder so much. It can cause us to miss out on precious moments and also prevent us from making new ones. In my case it was hindering us from teaching Paisley that life is short and you only get one shot.

Control ends when we learn to accept the things we cannot change.

I realized I can’t change Paisley's condition, outcome, or how people react. What I can do is pray for her, love her, and be the best possible advocate for her.

Paisley will receive stares. She will have hurtful comments made about her. But we choose to respond with kindness and educating others about her condition. Mastocytosis will not dictate her life or even define who she is. Her actions will and how she responds to others. We can lead by example, and only hope that she too will choose to respond with love and be confident in who she is and will become.

Letting go can be so hard especially when it pertains to something or someone so close to your heart. It takes baby steps and I still find myself struggling from time to time. But believe me friend, when you finally do let go the freedom you feel is unmatched.

-manic mom