My dad has been a rock since the very moment our CHD journey bean. I've seen him fight and cry over what CHD has done and where it has brought us. I've also felt his arms hold me, his voice calm me, his prayers protect me, and his love change me because of CHD. Surviving, learning, and growing through my heart condition together has only made us closer. My dad is full of wisdom and truth and I truly believing that being a Heart Dad has help to shape him into the incredible father he is today. I had the opportunity to ask him a few questions about being a Heart Dad, a little bit about his thoughts and feelings and his own experiences with CHD; some of the lessons he has learned and the wisdom he has gained by being a Heart Dad. Enjoy getting to know my dad a little bit better.
What was your initial reaction when you found Emily had heart condition? Emily's mom and I prayed. We had realized that there was very little that we could do, God was in control. He showed us that Emily was not ours but His.
How did your thoughts of what fatherhood would be like change in those first few days?
Emily was brought by ambulance from Mercy hospital in Rockville Center, NY to St. Francis Hospital in Roslyn, NY . It was Saturday June 20th and the next day was Fathers Day. I remember driving, following the ambulance, thinking that I wasn't sure how much longer I would be a father. Thankfully her condition was not life threatening but I did not know that at the time. Unlike today, information was not readily available on the internet. We had to rely totally on the medical staff at Mercy hospital and they didn't know much.
When I arrived at St. Francis, I met Dr. Reitman, her new cardiologist. He told me that that he was sorry that he did not meet us at Mercy, but that it was just quicker to meet at St. Francis. I liked that he was concerned about us as well. When he came back from examining her, the first thing that he said to me was, "I do not fear for her life." That is what I needed to hear. Up until this point I didn't have a clue as to how serious her condition was. He had a pre-made sketch of her heart explaining her condition. That also gave me comfort because it was obvious that this was something that they had seen before.
How did you handle taking Emily home and caring for her after her diagnosis? Honestly, I don't think we handled her any differently than we would have if she did not have her heart condition. Emily's mom and I had both been around babies and were comfortable with newborns. Her mom also had a medical background and we were instructed as to what things to look for. The most difficult part was that she was sleeping and eating poorly. Most of the burden of handling these things fell upon her mom.
Were you afraid at all during Emily’s time in the hospital for her surgeries? What or who helped to calm your fears? During the weeks prior to to Emily's open heart surgery, we met with the surgeon to explain the procedure. He was very matter of fact, explaining the procedure and giving us mortality rates. That didn't seem to bother either one of us because we knew that Emily was in God's hands. I remember laying in bed on night and saying to Emily's mom that God could "take her" and that would need to be ok. We knew that God was in control and He would give us the grace and strength to deal with whatever happened.
What was the most difficult part for you during Emily's surgeries or hospital stays? I think it was hardest right after the surgery. She was in a lot of pain and made immobile because of the tubes in her. It was hard not being able to do anything to help her.
Did did your parenting change after Emily’s surgeries? What was it like to raising a child with a heart defect alongside a child who was developing typically? I don't believe it did. The last thing we wanted was to treat her like she was helpless and for Emily to feel sorry for herself. I don't believe she really ever did. Once in a while maybe but not too often. Emily had physical limitations that her siblings did not, they all seemed to deal with it well. Her siblings wouldn't allow her to get away with anything that they thought she should be able to do and for the most part they knew not to push her. She was very supportive of their physical activities and attended their sporting events whenever she could.
What was your greatest concern for Emily as she started school? What was one thing you wanted or needed Emily’s teachers to understand and know about her and her diagnosis?
Obviously we needed to make sure that the school knew of her condition and dealt with it correctly. One of Dr. Reitman's concerns was that she was doing so well that people around her would not realize the seriousness of her condition. He had a major concern for her gym teacher. The "no pain no gain" attitude of many gym teachers would be a problem for Emily. She needed to be able to limit herself as she saw fit. In reality the effect was the opposite as the gym teachers were afraid to allow her to do anything.
Her classroom teachers needed to be aware of her condition as well. Over time she became more tired and irritable at the end of the day and that became a problem. One of the solutions was to allow her to have a snack and a short rest . That seemed to help a bit. As she went into middle school and high school we made sure her schedule could be adjusted to meet her needs. For the most part the school officials were very cooperative.
Has handing over control of Emily’s health to her as she has gotten older been hard?
Emily did a very good job of taking over control of her health. When she was younger we needed to limit her, as she got older she learned how to limit herself. Our role became as an observer, telling her what we see as opposed to telling her what to do.
What is one thing you wish you had known back then? Medical science is constantly evolving. Other than that, I don't know of anything that we would have done differently.
What would you tell a dad today whose child has a congenital heart defect and is facing a similar experience? Trust God. You need to be able to trust your doctors too. Be flexible in your approach to things and rely on your family and friends for support. See this as a growing experience for you and your child. And trust God (again).