In a previous post I spoke about Camden's Atrial Septal Defect.
Since then we have not had any issues medically and Camden is just like any normal 8 month old. He isn't delayed in his growth/development and continues on as a happy baby. Over the next year we will meet with a Geneticist, figure out what exactly is in his DNA, and stay in contact with the Cardiologist. The big age for the open heart surgery seems to 3, the same time I had mine done. I haven't looked into it or asked why, but I assume it's along the lines of the final development of his heart so they can 100% get an accurate reading of if the surgery is necessary...which the doctor seemed pretty sure it is.
We're staying positive and holding high hopes that he wont have to under-go any medical procedure. We want to avoid the surgery at all costs. But if it means saving Camden's life and ensuring him of a happy, healthy future...we have to do what needs to be done.
It wasn't until that day though that a lot of reality hit me.
One, being that it's a definite that I gave him the defect.
Which as a mother understandably eats me alive.
Two, that ALL of my children will have a
50% chance of inheriting the defect.
And three, that there's absolutely nothing I can do about it.
All three hurt pretty badly.
Before Camden, I wanted no children. After Camden, I wanted more children in due time. Now, after living with the reality of an Atrial Septal Defect I feel selfish for even thinking about more. I don't know how I could live with myself bringing another child into this world knowing I could possibly be putting them through such a big surgery. Or if we'll be lucky enough the second time around to have a child who's defect isn't severe like Camden. I don't even know if I can handle a second open heart surgery when I haven't even survived through the first.
My head spins thinking about this topic because I get such mixed emotions. I've gotten feedback that I shouldn't be so hard on myself, and that there is always a 50% chance that they won't have it. That other babies have worse conditions and people have children all the time and take risks.
But what they don't understand is that it is a dominant gene. One thing I've left out in all of this is that my heart defect is brought on by my genetic defect called the Holt Oram Syndrome. Feel free to look into it if you're interested. But what you'll find is that it isn't pretty. It's a parents nightmare. And was my nightmare all through my pregnancy. Every ultrasound I felt like I was holding my breath. I prayed long and hard for ten fingers and ten toes, all the same length, width, and not deformed. Something as small as seeing a tiny little NORMAL hand on a screen brought tears to my eyes.
It's the little things, all the day down to the tiny joints forming in their tiny fingers.
I get so angry sometimes and wonder why I can't just enjoy the thought of being a mother to another child. I get so angry that it's happened to me, a good mother. Someone who wants to be at football games, dance recitals, and do anything I can to be their biggest cheerleader. When abusive and horrible women can pop out babies as they please.
And that not only do I have the same scary thoughts all women have about miscarriage, and still birth...but now I have to pray my child can go on daily and do the things we take for granted everyday such as picking something up...and not being picked on and stared at.
This is my life. This is Camden's life, and this is my families future. I wish I could change it...but I can't...so the only thing I can do is just hold on for dear life and take on anything God gives me. I can only hold my breath at every ultrasound, stop being so hard on myself and tell myself that no matter what everything will be OK.
They say God only gives the strongest people the hardest battles because they can handle them.
I really hope he's right.
Jessica
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