I really thought that I was past this point – the point where you wonder what you did to cause this. I believe that every mother who is told that her child has some sort of birth defect goes through it . . .what did I do wrong? Since Genevieve’s diagnosis, I have spoke to countless other women and told them all the same thing . . . this is NOT your fault!
I am overwhelmed as we approach her surgery date. Today, an article from Boston Children’s Hospital has been floating around the heart groups on Facebook and was shared with me from other parents. If you want to read it – here is a link:
It is about weaning Cardiac patients from pain and sedation medications.
I am not sure that I have made it to the end of the article. The tears blur the words on the screen. We are putting Genevieve’s little body through so much trauma that she will potentially go through withdrawal to come off the medications.
Then I am back there – just over five years ago . . . Genevieve was a few weeks shy of her 2nd birthday and not speaking in words yet. They were bringing her out of sedation after her open heart surgery and had removed her breathing tube. I can still hear that sound – she laid on the bed and just moaned for hours. While the cardiac team managed her pain and read her body’s cues as to how she was feeling . . . it still haunts me.
This is big – I hate the thought of her being in pain and I know that there is no such thing as pain free surgery – let alone cardiac surgery. It is just not fair and I am sad, angry, exhausted, broken, shattered, destroyed and so many other words. I can’t do this . . . yet, we all know that I will. Somehow, we will find a way to get through this.
What choice do we have?