Throughout out my life with Congenital Heart Disease I have often been reminded that before I started on my own personal journey, my parents had started one of their own. Without any prior knowledge, their first child was born with a disease that would change so much of what they thought and so much of what they knew. So many who know them see them as a couple of incredible strength and unwavering faith...and they are! What people don't always know is that so much of who they are individuals, and as a couple, is because of what they went through as parents of a sick baby. But instead of hearing about it from me, I thought it best you hear it straight from the two of them. Here's a glimpse of my parent's perspective on having and raising a child with CHD. My momma wrote this for me to share. Enjoy!
When I think back on what it was like when we first found out that our daughter had a complex Congenital Heart Defect, my first thought was, "Will she live?" My second thought was, "Tell me everything I need to know!"
It's funny how different people approach a crisis like this differently. Whereas I needed to know every detail, my husband wanted to know just the necessary information. I guess allowing each other to approach this in the way that they felt most comfortable worked well for us.
My obstetrician came into my room the morning after delivering my daughter to talk to me. I will never forget what he said to me. He said, 'It wasn't anything you did." I thought to myself of course it wasn't anything I did! I never even thought of it that way! I guess there are those who do struggle with that. Then he said, "Just be grateful it isn't an atresia!". I looked down at the little piece of paper that I had. On it I had scribbled the medical terms my husband had told me the doctors had determined my baby had after her first of many cardiac catheterizations. There in scary little letters were the words "tricuspid atresia". It was an atresia!
This was before computers and smartphones and those words were foreign to me. Being that I was recovering from a cesarean section in one hospital and my new born daughter had been transferred to a "heart hospital" and post-birth hormones... I think it's safe to say I was a bit emotional.
One thing that I often tell parents who are going through medical crisis with their children is that God gives His grace as it is needed. You cannot store it up for an occasion like this. Throughout her multiple catherizations, hospitalizations, echocardiograms, doctor's visits, three surgical procedures, chest tubes, Pacer wires, oxygen tubes and tents; throughout it all; God's grace was plentiful! He surrounded us with family and friends to encourage, support, and uplift us during those difficult days.
I know I was worried from time to time; when she got sick, when she had a fever and her body shook from chills, when that persistent cough turned into a rolling chest congestion, when walking up the stairs became an exercise that that required several rest periods, and when I saw those blue lips becoming apparent even at rest. I don't think I ever panicked but I certainly worried. I also think the deep faith my husband and I shared drew us closer through all of this. We never disagreed about what the next step would be or what doctors we should see. We shouldered the difficulties together. We were always grateful for the beautiful little girl God had given us the privilege of raising.
As she grew we had to begin to transfer responsibility for taking care of her health from us to her, and honestly that was difficult for me to let go of. I guess I always felt like I needed to make sure that she was taking her medicine and not ignoring signs of impending sickness, etc. My faith and God's grace carried me through that transition as well.
I do not regret a moment of the journey we have been on. It has shaped me personally. It has shaped my marriage in some ways, and it has shaped our family as a whole. Life is precious despite what we see in the world around us. Yes, life is very precious! My daughter's life is precious! And because of what she has gone through and by extension, what we have gone through, I don't think will ever take that for granted.
-Jayne and Gerard
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