Emma Kate came home in July of 2013. And then she went to Kindergarten and that seems like forever ago... and then she had a relatively normal elementary school experience. She did school plays, she went to the beach, she made friends, she went to Disney World way too many times. She fit her role as middle child perfectly. Always looking up to her big sister and wanting her attention. And mostly loving her little brother and loving his attention. She is now in the 8th grade. She is a cheerleader and she loves social studies. She loves the Gilmore Girls, the Office, and anything teenage romcom.
She lives life.
And I don't write that lightly. I understand that some children in her situation aren't as fortunate. We are extremely grateful for the life that she is living. We are grateful that she is alive. And we are heartbroken knowing that isn't always the case with children with HLHS. Sometimes we have survivors guilt if that is the correct term in this situation. We don't feel guilty that she is alive but we are broken that some others don't have the same experience.
HLHS used to consume most of our thoughts. The diagnosis was her life. I feel selfish saying that we don't think that way anymore. It is always in the back of our minds, but mostly way back. We prayed that she would live a normal life and praise God she does. We prayed for a fighter and I know God was laughing knowing who she would become. She is the strongest 5 ft tall 85 lbs human on the planet. She can bring all the joy and sometimes all the sass and stubbornness you could expect from someone who has been through all that she has. She loves to act and hopes to become an actress. She is compassionate and is an extremely thoughtful gift giver. We have a special handshake and a special butterfly kiss goodnight. She is funny and has an infectious laugh. If you didn't know about her HLHS, you wouldn't know. But she is ok talking about it.
If you are reading this and are beginning your child's HLHS journey, know that we are praying for you. I don't know what the outcome will be or why. The heart community is an amazing group of parents put in a place they never wanted to be in, but who are in it together. If your story is different than ours, please know that there are people out there who have gone through what you are about to and can be a source of strength, knowledge, compassion, and comfort.
If you are reading this and are one of the countless people who have prayed over Emma Kate and me and Bethany, thank you. It is still humbling having people come up that I do not know and ask me how Emma Kate is doing. I have said before and I will the rest of my life, we have received the blessings from your prayers and supports and I am eternally grateful for you.
And if you happen to be a doctor or nurse who has cared for Emma Kate or any children like her - you are forever my hero. We may put HLHS in the back of our minds, but you all are always the best in our eyes. The love that you have given to us and to thousands of other families is nothing short of miraculous. Thank you for performing miracles every day. You are a blessing.
