Parenting

The day I learned my third child was going to be born with a broken heart did not change me. No, nothing different happened except for the fear of him not making it through delivery. I had hope. Hope that he would be born healthy; hope that he would not need surgery like the cardiologist promised and hope that my life would remain the same. That hope is dead now. I still have hope, but it is a different kind and on a whole new level. This hope was born about two hours after Micah, when I heard he would require open-heart surgery after all. Then, at that moment, my hopes for my baby at that moment turned to the hope that he would make it to his room “one day” that he would make it out of surgery, that he would live. Parents are not suppose to actually think in their minds for a moment that their child might not make it.

My life changed, I no longer held the hope of a “normal” universe, it turned to the hope that I could just hold on. After all, there were two more, equally as important and incredible people who needed me at home. Micah was struggling to live, to breathe, to be. Noah and Leah were born perfect, perfect in every way. Sure I worried about them, I am a worrier after all, but my worries all changed that day. Looking back, I messed up, but at the same time, I did not. My two oldest babies needed me, but I could not leave my fragile baby alone in the hospital hanging on for his life. In that moment, I abandoned them, they were without their mom for about three and a half weeks physically, but I checked out emotionally for much longer than that. I was a screaming fool who could not control my range of emotions, so I simply stayed angry and sad all the time. I feel guilty for possibly causing Micah’s heart defect, but I also feel guilty for not being there for Noah and Leah, they needed me too, that is the mom’s job. I also feel horrible at how I have spoken to them, yelled at them and expected them to understand what I was feeling, that is not their job, they are just kids, kids who need a “healthy” mom and not one who is going to freak out if they spill their cup of milk on the floor.

Anyway, I am struggling with something, how can I treat Micah the same way as I treat Noah and Leah when I fear all the time for Micah’s life? All these heart kids can be just fine one minutes and gone the next-poof-gone dead, forever out of their parents arms, so how do I do it? I want him to have a normal life and not to be defined by his heart, but how do I let it go for just a little bit? How do I just let him be and not worry about him overexerting himself or overdoing it? I just need someone to tell me the easy answer, because I am not finding my answers anywhere, I cannot find a way to stop feeling this way. I hate that I worry about my baby leaving me. I am scared of everything with all the kids, but it is magnified by about 2 trillion with Micah. What will I do when he is old enough to make bigger decisions about his life and I do not have the ability to keep him as safe? Oh my, I do not even want to think about that!

Another thing, why do I get angry with my healthy kids when they complain about a little scrape on their knees…their brother had his chest pried open when he was only three days old-TWICE, and he wakes up every single morning with a smile and laugh. He never complains long about any injury he gets…little or big, he is thankful. I feel awful that I do not worry about a little cough or fever with them like I do with Micah after all they are healthy. I don’t think parents of “healthy” kids get it, not one bit. I don’t even think that many try even when they have a dear friend who has a child with a chronic illness. Let’s be totally honest here, I use to worry about my kids getting really sick, we all do that, but you know what? I had no idea that kids are born sick and the fear that is born into the hearts of these chronic kids. I don’t think some people realize that every night when I go to sleep I pray for Micah to live through the night so that I can have his smiling perfect personality in my life for one more day. I do not think that parents who have not watched their child fight for their life realize the fear that is instilled on a parent when parents have to sign a waiver that says that their child MAY not come out surgery or that some kind of tragic side effect could happen in surgery that may cause permanent damage to your child. A parent who has only had to deal with the common cold or low-grade fever does not understand or realize what a parent of a chronic child experiences. It is awful and it makes me sick to my stomach to even think about what Micah has gone through.

I had a friend ask me a few weeks ago if I was okay. My reply to her was sad but incredibly true in that I do not think I will ever be okay again. I can be happy yes, but I will never be okay…how can a parent who lives with the possibility of their child’s heart stopping at any moment be okay? How can I not think about every activity I share with Micah being the last activity we will share together? I understand that we are not promised any tomorrows, any of us, but the fact that Micah has that much more stacked against him makes it that much more difficult for me. If I let my guard down something comes back and slaps me in the face, so it is better for me to be hyper vigilant with every detail of Micah’s life, it helps me…I am prepared and I have some control. I am able to make sure that he gets the care he needs, when he needs it, not when it is too late. This crazy behavior makes me sane in some way, it helps me realize that I can control what I am able to control and I have to leave the rest up to my belief that G-d will take care of my family. I have to believe that, but I will say that is hard too. So many bad things happen to good people and it is hard to deal with, really hard.

To make matters even worse, the relationship between the parents of this sick kid changes. All of our hopes and dreams for our kids change and we are faced with dealing with all the medical bull shit that we have to learn about and understand. There is resentment and anger and tons of frustration with one another. There are misunderstandings and fights that should never take place and there is the bitterness that is expressed throughout every day. I know that I am blamed for Micah’s heart on some levels…he has never come out and said it, but I can tell. I can see it in his eyes and through his words. I am angry with him for not learning more about the medical stuff and for telling me “things will be just fine”. No one knows that, no one. A child’s illness changes a marriage, it is inevitable. Parents should not have to deal with this, but we do, every damn day, every day. We never get a vacation from the illness, we can vacation, but the disease follows us, it has been born into our hearts and our souls and we will never have a day that goes by ever again where we do not have some sense of worry about Micah’s heart. This can and does destroy marriages, but I know that ours is strong enough, we will fight and re-find each other and we can be happy again, it will just take time and a lot of work. We are struggling hard now, but we will make it.

Okay, I guess I feel a little better now, not much, but at least I got some of this out of my system.