Evelyn, age 2

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Child's Diagnosis: Shone's Complex

Has Kerrington’s Heart impacted your journey? If so, how?

Kerrington's Heart provided financial assistance when we first found out about Evie's diagnosis and sent us care packages while we were in the hospital. More importantly, though, they provided emotional support and helped us feel less alone. From Heart Mom Meetings to fun events to phone calls to educational opportunities, Kerrington's Heart has been by our side every step of the way. I can't emphasize enough how much this organization has done and continues to do for us and families like ours or how much this group of volunteers, parents, children, and family has come to mean to us. They have become family.

What’s one thing you wish you’d been told at the beginning of your journey?

I wish I'd been told to speak up while in the hospital: to ask questions, insist on answers, and if I don't understand something, make them explain it to me in a way I can understand.

What’s one word you would use to describe your journey and why?

Surprising. You can never really prepare yourself for how difficult the journey will be, but it is also surprisingly beautiful. There are no little steps or small accomplishments, so every step forward is a bright, shining light.

Please share a little bit about your story.

Evie was born on September 7, 2016 with Shone's Complex. Originally diagnosed prenatally with Hypoplastic Left Heart Syndrome, they discovered additional defects after she was born and during her subsequent cardiac caths and surgeries. The initial 8 months of her life were spent, almost entirely, in the hospital. Due to complications following her second open heart surgery, Evie almost died, and we spent much of those months praying for a miracle. In spite of her bumpy start to life, Evie is now happy and thriving at home. She is feisty and sassy and loves playing outside, squealing at the cows that border our property, flashing lights, music, and bouncing. She will have at least one more heart surgery after her 3rd birthday, but for now, she is enjoying ruling her kingdom from the comfort of home.

Perspective by Tara Gilliam

As parents of medically fragile kids, we do what we can to make sure our kids don’t miss out on the experiences of childhood. We find places and things like restaurants, theaters, camps, sports/extracurricular activities, and parks that include and accommodate. We go out of our way to blend their very adult like life (medications, frequent visits to the doctor, surgeries, etc.) in with their peers. Sometimes they pick up on things they are missing out. As kiddos, and as humans in general, the big picture isn’t what we always see.

To my friends with kiddos who:
-desperately want to attend that super fun summer camp that all the kids were raving about
- want to see latest movie that’s been marked as a high risk for epileptics
- want to go to the pool party but the risk of oozing gastric fluid from the g-tube or having a ostomy bag burst isn’t worth taking
- want to go to the best park around but there’s no accommodations for the different means of getting around

I see you. I feel you. We may have different journeys but I mourn similar things you mourn. It’s hard to ignore the pain our kiddos feel when they feel excluded as a result of their life experiences. It’s ok to feel that for a moment. It’s ok to not be alright. We are like most parents who want to see their kid happy.

I do not believe that will ever be something truly all inclusive. You can’t appease everyone. (I mean, the awesome experiences we have available as medically fragile families are exclusive to otherwise healthy kids. I’m ok with that. We don’t want the germs they can afford to have. )

We can keep going to the camps special for our kids (because they are WAY more awesome any way!).

We can find a way to bring that super cool movie home and recreate a safe and fun theater environment.

We can bring the pool experiment home...whether it be with water balloons, homemade slip and slides, a sprinkler, or an actual pool... we can establish that kind of fun. Because we have dominated doing life different.

We can go wherever we choose to tolerate the limits set by others.

We must show the world that different means of mobility doesn’t mean limitations.

We must open the eyes of those who see standards, limits, and stereotypes and show them that different is never bad. It’s just different. Perspective opens the mind to learn, the mouth to advocacy, and the eyes of the heart to a passion only found when acceptance is reached.

Head up. You. Got. This. You rock. You are doing your best and your best is enough. Even if sometimes it hurts a little. Keep on chugging!

 

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