Chances are good I'm not the only heart mom you know. I know that at least 4 other people in my high schoo graduating class alone have kids with congenital heart defects. I'm sure if you looked hard enough you would find them at work, at church, in your children's school classes, in your past, in your neighborhood, after all heart defects are the number 1 birth defect. They occur in one out of every 100 births and between 33,000-35,000 babies are born each year in the US with a heart defect. So, here are things that I think you should know about heart moms (and dads for that matter).
1. We have faced the mortality of our child. We have been told that their hearts are broken and the only chance of survival are through open heart surgery or heart transplant. We have sat at hospital bedsides and counted every heart beat and watched every breath, hoping it wasn't the last. Some have lost their babies to this killer. After experiencing any of these things, we find it hard not to value the life of every child, knowing that life in itself is a miracle to be celebrated and life is also a treasure to be protected at all costs.
2. If we don't return your phone calls or make it to appointments or cancel out on dates with you, it is nothing personal. We may be overloaded with the care required to take care of our heart child. We may be emotionally exhausted, and not up to a chat or a movie or a night out. Some times all we can do is fall into bed at night and cry. Some times we don't want one more person asking about our child's condition, because explaining it is hard, and painful. Some times we just need some time away from it all. Please don't give up on us. We still need you there when these times are over. We still want you there when these tough times clear.
3. We talk about heart defects and our heart kids a lot. We don't find our children any moreamazing than yours or any more amazing than our heart healthy kids for that matter. We do know that having a baby and having a doctor tell you your child has a seriousheart condition that threatens their life is overwhelming, furthermore, when we find out that it is the most common birth defect, we are moreoverwhelmed. We hope to prevent this from happening to another mother. Preparation and knowledge is the key to making it through having a baby with a heart defect. We hope to educate others. And some day, we really hope to learn how to prevent these defects. For some of us, our children's lives can only be saved through organ donation. Others want to offer support and love to those who are going through what they have already been through. Some have lobbied local and national governmentsto get newborn screening, pulse ox testing and better tests for heart defects. All these things take a voice…one who dares to speak out. If our talking bothers you, we know that there are others out there who it will be the difference between life and death for. If our talking bothers you, we know that somewhere a mother or father or grandparent is feeling alone and frightened and despondent and completely in despair and agony, and our voices can help them. If our talking bothers you, we don't intend to offend, but we do hope to reach out to those who want to listen to what we have to say.
4. We have learned to be good at listeningthrough our journey with heart defects. Somewhere along the way someone listened to us, or maybe they didn't, but either way, we vowed to listen when it was our turn to offer help or hope. We hope to be a lifeline to others. We are accepting of others problems because we know what life is like with a fragile child. We champion the child who may be different or left out or picked on because of something beyond their control. We have empathy for any parent watching a child suffer. We sorrow over any child that is feeling different or isolated. We understand, or at least try to, because we hope that others do it for us and our children. 5. We have learned to love a little deeper and live life a little fuller. If you ask us about the best schools and the fabulous plans laid out for our children 10 or 20 years down the road, we may not have thought that far ahead. We live moment to moment, because with a heart child, that is how life runs. We enjoy today for what today brings, because we know that tomorrow may bring stormy weather. So we may not be concerned about grand achievements or the highest grades in the class or the smartest or most talented or prettiest or best athlete because for us, each smile is more than we asked for, each memory is worth morethan every good grade ever earned. For us, it is the little things that are the biggest achievements. A first birthday is a success to be celebrated. Every heart beat is our pride and joy and just the fact that they were here and lived for moments or days or hours with broken hearts is enough for us. 6. We have a need and a duty to protect our broken hearted children. We use words like fixed or repaired when discussing our children's hearts, but the fact of the matter is, their hearts will never be normal. Surgeries and procedures and medicines and artificial stimulation may help our children's hearts to work, but they will never be whole. We may seem to overreact to colds or flus or viruses, but what is a minor illness to your child, could be disastrous to our child. A sickness that gets in the blood stream and attacks the heart or upper respiratory tract or heart's lining, can damage it beyond repair, causing a need for more surgery, heart transplants, or death. We are not being overdramatic. We are not making a mole hill out of an ant hill. All of us know heart parents whose children have come down with a "cold" on Friday and are hospitalized and fighting for their lives on Sunday. Please respect our concerns and trust us, that they are real. 7. We are all different in a million ways. This list is certainly not all inclusiveand not all encompassing. Other heart moms might wish to add to it or take things away, but it is a broad spectrum of what we wish others might know about us. We still want your friendship. We love a friendly phone call, an invite to dinner or a girl's night out. We value our time with others, even though it may be limited. Don't run away from us. Don't ignore us. Even if you don't know what to say or how to act, tell us that, and we'll reassure you that just being there is more than we could ask for. The journey of the broken hearted is challenging and lonely, and those of you who take the time to walk it with us, lighten our heavy load and help us carry our burdens.