Family Forum

Welcome to our online caring community. This is a forum where families can receive emotional and spiritual support from the EKHA Care Ministry Team, as well as other families across the country who may be traveling a similar path with a child who has a heart condition. It is our desire to offer love, support and encouragement to you as we all walk through good times and hard times.

September 11 - Heaviness of Hope

When my 13 month old son, Ollie, passed, I experienced an indescribable peace.  A peace I've never felt before; one that can only be explained by God's grace and his promise of life everlasting. I held Ollie's hand to my face.  I soaked him up.  I watched the monitor as his heart beat for the last time and his little body took its last breath. His multi-organ failure had taken its toll on his sweet face... He no longer looked like himself, but I could feel his sweet, beautiful spirit all around me, the one I was so blessed to have known, even if only for 13 short months.

After we said our last goodbyes, we walked through the PICU and down the hall to the visitor’s lounge, where we were solemnly greeted by family and friends who came to show their love and support. That hallway that I'd walked dozens of times seemed longer than it had ever felt before. It was dark; the room was dark. My world was dark. My body felt so heavy that my legs couldn't take the weight, and I struggled to walk. My sweet husband held me up. Leaving the hospital that night, I felt defeated, run-down, heavy, hopeless and empty. I went to bed that night and I wished I would never wake up. I knew myself, and I knew I wasn't strong enough to face my new reality.

However, the morning came and I was awakened by my 3 1/2 year old daughter, my sweet Maddie, tapping me on the shoulder. "Mommy, can you make my breakfast?" Life goes on. It had to for her, for my husband, and for all the people I love and who love me back.

A few days after Ollie's memorial services, I met a woman who'd also lost a child, and she told me, "The pain never goes away, but you'll learn to live in spite of it." All I'd ever heard when comforting someone facing grief was "time heals all wounds" and "the pain will get better in time." But those aren't true. The pain never goes away. Instead, the pain is always there.  But if you face your grief, accept it, and explore it, you'll learn to build a life around your pain. In the grieving world, we call it your "new normal". Even when you think you're all good, you've conquered that pain, you're healed, out of nowhere grief will hit you like a bag of bricks... Bam... A dark day, you can't stop crying, you are tired of hurting, tired of fighting, and you can't see the light. But, as they say, this too shall pass. And, when it does, you get back up and you try again, one foot in front of the other. Keep moving forward. Thank God that this fellow grieving mother told me this. And thank God I didn't spend the rest of my life waiting for the heart-wrenching pain of losing my baby to go away... That life sounds just as dark and heavy as I felt the night I said goodbye to Ollie. If this pain was going to be with me forever, I was going to embrace it, explore it, build my life around it, and move forward.

Despite losing Ollie, I had too many beautiful reasons not to be happy. Some days, the reasons are obvious... my husband, my Maddie, my rainbow baby, Annabelle, our amazing family and friends, our church, our community. And other days I have to dig a little deeper... the way the sun shines into house at dawn and dusk, the love in my daughters' eyes when they look at one another, a beautiful flower, a rainbow, a butterfly, a delicious cup of coffee, music, silence, finding hearts in unexpected places, the list goes on and on. When you adjust your mind and open your heart, you start to see beauty in places you hadn't noticed before. Find things that you believe to be beautiful and things that inspire you and surround yourself with them.

Start each day with a grateful heart. It's much easier to make it through the days ahead when you start those days acknowledging everything you have to be thankful for. And some days, especially right after your loss, you just need to grieve. Our society has come up with so many "comforting" words to share with someone who is grieving, but the truth is it sucks and it's just not fair! You need to not worry what anyone thinks of you, not worry about any timeline to grief (by the way, there is no timeline to grief)... Acknowledge the pain, feel it, read about it, write it down, draw it, yell it, cry it out, process it. The days, weeks, and months following your loss, those are very hard, as you're still trying to figure out how to move forward and how to live while you carry the weights of grief. I tell those who are new to grieving, be sure that you cry when you need to cry, LET IT OUT... but smile and, even better, laugh, every chance you get. Take it day by day, hour by hour, moment by moment. Move with the ebb and flow of grief.

In the beginning, let your grief take the lead. Sooner than later, you'll find your way and over time, you'll have more good days than bad, you'll find joy in the ordinary, and you may even discover a life fuller and richer than you've ever known. Embrace your new normal and honor your loved ones by living life to the fullest. Remember that they LOVED you and don't you always want the best for your loved ones? To those grieving today…peace, love, light and lots of hugs." 


Jenn Hinkle, mom to Ollie, is a member of a heartblock group.  Her church asked her to write something to be shared with others new to grief in their community. Her son passed fairly unexpectedly a couple years ago at St. Louis Children's Hospital.

Caring Community: August 29 - Work & Pray

Caring Community: August 28 - Remembering to Remember

Caring Community: August 13 - Quad Cities Marathon - Raising Awareness & Funds for EKHA

Caring Community: July 4 - Real Rest this Fourth of July?

Caring Community: June 22 - Who do you love most?

Caring Community: May 23 - Seasons of Life - Enjoy Today!

Caring Community: May 13 - Easter in the Hospital

Caring Community: May 5 - An Excellent Life

Caring Community: April 19 - Fear in Life

Caring Community: March 26 - The Stand

Caring Community: March 18 - The Small Room
Caring Community: March 11: The Word

Caring Community: March 4: Gift of Life

Caring Community: February 25 - Options

Caring Community: February 19 - Water of Life

Caring Community: February 10 - Void Crept In

Caring Community: January 14 - Road Revealed

Caring Community:  December 16 - The Buddy Beagle Story

Caring Community:  November 25 - Giving Thanks

Caring Community:  October 15 - Freedom from Fear

Caring Community:  October 1 - Boundaries

Caring Community:  September 8 - Heart Lessons

Caring Community:  August 22 - Transitions

Caring Community:  July 29 - Quad Cities Marathon Sept 21 & 22

Caring Community:  July 20 - Is there anything too hard for the Lord?

Caring Community:  June 29 - Whirlwind