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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Meet Riley

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Child's Diagnosis: Pulmonary Hypertension

Has Kerrington’s Heart impacted your journey? If so, how?: Kerrington's Heart has allowed us to meet other families that deal with heart issues on a daily basis. It can be a lonely time when others don't understand the trials you go through as a heart family. Kerrington's Heart has been amazing and very welcoming to us.

What’s one thing you wish you’d been told at the beginning of your journey?: I wish we had been told about groups like Kerrington's Heart.

What’s one word you would use to describe your journey and why?: Whirlwind... There have been so many ups and downs with our journey and it was so unexpected as most people would agree. I feel very blessed to finally be where we are now.

Please share a little bit about your story:: Riley was always a healthy child or so we though except for the normal sickness that most kids get. She did tend to deal with run of the mill viruses a little harder than other kids her age. Riley was diagnosed at age 4 because she was becoming out of breath with activity. After an echo, we were referred to Cincinnati Children's to see a Pulmonary Hypertension specialist. It was terrifying. Riley's PH causes the right ventricle to of the heart to dilate. This can cause heart failure. Due to the pressures in her heart, she endures 24/7 IV medication but doesn't let any of it get her down. She has also been through many procedures and heart catheterizations and will continue to have to go through these for the rest of her life. She is now 7 years old and she is absolutely my hero. It's amazing to see how resilient a child can be. She inspires me to keep going every day and to give back to others.