I want to give you my perspective on having a heart child. Now this will differ from other heart kids because my kid’s heart condition is unique.
My kids look healthy, they look like normal children, play like normal children, and there is no outside hint that, inside their tiny little chest, their heart is not beating like a normal child.
Now, take how much you worry about your child. Even the simplest of worries, will they get picked on, will they eat enough, did they brush their teeth, did they have a good day at school, are they going to look both ways before they cross a street? These are normal worries about your child and rightfully so. As parents we naturally worry about our children.
See, I have all those same worries, but what can, and at times consumes me, is whether my child will make it through the day without dyeing. Maybe you think that is dramatic, but the fact of the matter is it is true. EVERY DAY I send my children to school I have to fight the fear that I may get a horrible phone call today. Every day I ask myself, is today going to be the day one of my children collapses and dies? If you think I am being dramatic, I am not. It is a very deep rooted fear I fight every day. I can tell you, one little phone number from my children’s school shows on the caller ID, my knees weaken, my heart instantly speeds up, and it is all I can do to breath. I live with fear every day because losing one of my children is something I just can’t bare. Yet it is something I must come to terms with.
While you all may sit there and say I am crazy, or that it is not going to happen, let me remind you that it has happened. My son has suffered sudden cardiac arrest. I have always put it lightly, he had a deadly arrhythmia, but the truth of the matter, my son died, and with the work of good technology (that is the only way the doctors can explain it) his pace maker saved him.
I don’t want pity, I just want you to realize that there are a few moms and dads out there with my same reality. It is a horrible reality we face every day. While I try not to live in fear because it can and will consume you, there is an internal battle we face and demons we fight daily, and at times, that alone is exhausting.
