Me and My Ugly Heart

My child has never been healthy, well not by most people's definition anyway.

She was born with Down syndrome, which by itself did not give Jaycee poor health. Her congenital heart defect did though. Jaycee went into congestive heart failure a few days after birth. I hoped early on that once her heart surgery was performed that her life would not revolve around the medical establishment. But that's not what happened. 

Asthma became an issue when she was a baby and continues to be a problem today. (No, she hasn't outgrown it despite kind-hearted people assuring me that she would.) Then came obstructive sleep apnea, GERD, and a list of other things that I won't go into detail about. These things have made surgeries and hospital admissions a regular part of her life. 

There has always been medicine in the cabinet for her to use daily.

One piece of medical equipment when she was a baby has grown into 4. 

Home oxygen has been on stand-by in our home for years. 

One hundred minutes of each and every day is devoted to Jaycee's airway clearance and medicine regime for the past 4 years. 

These experiences have made me appreciate the small things in life. They have made me feel blessed by little victories. They have given me compassion and understanding. They have given me a unique viewpoint and perspective on life, which I appreciate. 

There are times, however, when I see my experiences have done something else. 

They can allow my heart to grow hard and ugly.

A few years ago, there was a story about a teenager who died in a freak and unfortunate parasailing accident. The first day the story was on the news I thought it was sad. The second, third, and fourth day the national news ran this story, I started to get mad. I thought: Children die everyday in a hospital. Those parents don't get to tell the world about their amazing children. No national attention is given to them when they die. The parents of this girl took a risk letting her do this activity, and unfortunately, it ended badly for them. The parents probably had several good years with their healthy child before the accident; there are many parents who would have given anything to have a healthy child for so many years. 

The more I saw the story, the more aggravated I got. That was really Christian of me, right? That's when God would whisper to me...watch your heart! Behind the story was a hurting mother who didn't deserve what happened to her child. I had some very strong emotions over this story, and they weren't good. They revealed something deep inside of me that was rooted in my experiences with my medically complex child.

I learned that jealousy can rear it's ugly head in strange ways when I hear things like this. Along with it comes judgment as I decide who "really" is getting the short straw. That's terrible of me!

I have opportunities to share my love with others, but my heart reveals more ungodly feelings. In my work, I meet many parents of children with all sorts of histories and problems. Once in awhile, I will talk with a parent who tells me, "I took my child to the ER last weekend. It was the absolute worse thing. She had to have an IV for three hours before we could go home. It was so terrible."

I let the parent talk and express her worries. I say a kind word or two. In my head, I'm thinking: Really? Your child wasn't even admitted to the hospital. Your child only needed an IV for a few hours. Try being in the hospital for weeks lady. 

Of course, I don't say those things. That would be mean and unprofessional. I hold my tongue but my inner dialogue is going crazy. And I hear God whisper again...watch your heart! This mother had her first experience with the medical system. She was scared, and I should understand that more than anyone.

Then there's good ol' social media. When I read a post from a worried parent asking for prayers for their feverish child, I think to myself: Your child will be fine. They aren't even in the hospital. I rarely pray for these posts. What does that say about my heart? I don't even need God to point that one out to me. I'm wrong.

Please don't think that every day I am sitting around getting angry with people all the time. I have times when I get very worked up and off track. I am human, and I have struggles. I feel things that show my heart is not the reflection of God's. I have work to do. 

Sometimes, I have to remind myself that my experiences can cloud my viewpoint. I compare situations, make judgements about people's feelings and experiences, and decide who is worth my time and prayers. I let stories in the media keep me from seeing the deeper picture. That's so far off from God's heart. He loves people. He wants to help the hurting and meet people where they are. I should be doing the same. I don't want my heart to be ugly. I want it to be like God's.

I have to be vigilant to not let my life experiences make me bitter, jealous, and cold. I, of all people, should know how to minister compassion, grace, and love to others. I know what it's like to be a scared or hurting mother. I hope I can do better. So, I will caution people that are like me. If you have been through a tragedy, a hardship, or trauma, you too may be at risk for developing an ugly heart. Don't let your experiences keep you from reaching out to others who need some support. 

For more on this topic read Your Worst Thing.