Hello, I’m Christina
Hello! My name is Christina, and I am blessed to be the mother of three amazing kids, two of whom are HLHS heart warriors. I had never heard of HLHS before that fateful day we received the diagnosis, and I couldn’t fathom the world we were about to enter. I felt completely out of my comfort zone and unqualified to care for a child with significant medical issues. I longed for someone to hand me a manual about caring for children with HLHS and for a crystal ball to show me my precious baby was going to be ok.
I don’t have a crystal ball, but this website is my attempt at creating the missing manual I so desperately needed. My goal is not only to give hope to parents who have just heard the term HLHS for the first time, but to also help sustain parents who have been on the journey for a while. I hope the sense of community created by bringing parents, patients, providers, and families together offers hope, perspective, support, encouragement, and valuable resources. Never give up hope, and know you are not on this journey alone. I am sending you heart hugs and strength!
“Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And, if you’re lucky, they might be the teacher who turns you into the person you are supposed to be.”
– The Water Giver
Finding out not just once, but twice, that my child was going to be born with HLHS was devastating. With Ava, it was especially difficult because I was becoming a mom for the first time and was terrified of managing twins, let alone a heart baby. With Miles, I had experience taking care of a heart warrior, but no idea how I would manage two. What I didn’t know was that these two amazing kids would change my life for the better in more ways than I could have ever imagined. They helped me get clear on my values and focus on what matters most in my life. They taught me to always choose joy, focus on the positive, be present, and take nothing for granted. They have tested and strengthened my faith. They give me purpose and show me I am stronger than I ever thought possible. Ava and Miles are exactly who they are supposed to be, and I wouldn’t change a thing about our journey. They have made me a better person, and I am living a more fulfilled life because I have the honor of being their mom.
“It is the hard days – the times that challenge you to your very core – that will determine who you are. You will be defined not just by what you achieve, but by how you survive.”
– Sheryl Sandberg
This journey is hard—gut wrenching at times. No child should have to endure what our heart warriors go through, and no parent should have to hand over their child for heart surgery multiple times. Parents shouldn’t be worried about their child’s future and absolutely should not outlive their children. Our kids shouldn’t have to suffer the long-term effects of their anatomy and carry with them the trauma of their past. Yet, this is the reality of living with HLHS. I battled for longer than I should have against the realities of HLHS. I struggled because I was drowning in helplessness and felt like a failure because I couldn’t heal Ava’s heart. I finally learned that I had to accept our reality and come to terms with the fact I was not in control. I fully accepted God was in control and instead of fearing what the future might hold, I embraced His plan for our family.
I had to accept that I couldn’t change our circumstances, but I could control how I responded to them. I decided to focus on what I could control and became determined to thrive in spite of HLHS. I made a commitment to myself that HLHS would not define my children, me, or our family. I stopped stressing about the uncertainty of the future and committed to living in the present. I decided to never give up hope and to always choose joy. I made the conscious decision to live wholeheartedly with HLHS and celebrate each day we are given together as a family. Some days it’s easier than others, but focusing on thriving rather than just surviving has made all the difference.