When I was first told that our son would be born with a congenital heart defect I was too shocked to think about what that actually means. I worried more about the practical and short term things (for example: would I be able to keep my midwife? Would I be able to breast feed him?) It wasn’t too long before I started to really grasp that my worries should be more in line with; will he live? Will I ever know his smile or touch? Learning your child has a complex heart defect changes everything about you, everything about your life. In a moment you grow up. We had to learn all about the heart, we had to learn to make tough decisions in short amounts of time, and we had to learn to be not just parents for the first time but parents to a very sick little boy. It wasn’t always easy I will admit, it’s been a tough road and there are many nights I cry myself to sleep; however it’s also been a journey of discovery for us (his family). I have discovered joy in the little things, a hug, a smile, laughter. I have discovered strength where I didn’t think there was any, I have discovered courage, and I have seen firsthand what bravery looks like on the face of a child. Life doesn’t come with guarantees about health; it doesn’t come with promises of happiness, wealth or success. Courage can’t be found in someone who has never known fear, joy can’t be bought, and laughter sometimes comes on the heels of tears.
Hearing that our son had a congenital heart defect changed us, but in many ways it has changed us for the good. Our lives are made richer because each day is a gift, each smile a balm for a tired soul. Our children are not a diagnosis, they aren’t just statistics; they are beautiful, warm, loving, compassionate, little children who happen to have special hearts.
One of Joshua’s favorite things to tell you if you meet him is that he has pig valves in his heart, and he giggles. To him, it’s not a special heart, it’s just ‘his heart’ and in fact to him yours is the heart that is different because you ‘just have human parts’.
This is my first time posting for the new Cardiac Kids blog and I wanted to my first post to not be about the horror of CHD but the joy that can be found inside this world we live in. Living with illness of any kind reminds you that life is short and it’s precious and it’s very precarious. I no longer take the future for granted, when I am tired, frustrated, feeling hopeless, I look around me, look back at where we have been and smile because I have today, we have today. I have known too many ‘heart angels’ to not know how precious a gift that is.
None of us would choose this place; none of us want our children to suffer one more day, and given a chance I can guarantee that were we given a choice each of us would lay down our life if it would mean a cure for our kids. We didn’t choose to know about places like Cardiac Kids, Sick Kids, or any of the other groups and charities that help our children. We are here. End of story. What we do here is what matters now.
Laurie Haughton is a regular blogger for Cardiac Kids. Read her bio and learn more about Joshua here
Be sure to check back next week for Shannon’s first post!