Tonight I find myself reading through the list of heart blogs here on Mylah's blog. I love to keep up with other Heart Families and read their stories and watch their sweet and strong Heart Warriors grow. It gives me hope, it gives me courage, it strengthens my soul.
During these past 9 months since Mylah's diagnosis (Sept. 1st 2011), I have lived without breathing. I have waited for the other shoe to drop. I have lived in fear of the worst, and suffered "anticipatory grief" as one Heart Mom states. I have come to realize that I am not alone, that there are hundreds upon thousands of Heart Moms who suffer the same fears and anxieties that I have. Who, like me, worry about their Heart Baby every. single. day.
In my readings, two posts touched me tonight, two that had me sitting in my office chair, shaking my head in heartfelt agreement, while trying to read through tear filled eyes. Thank you to Amy and Randi for putting into words what I could not, and still can't, but sharing the emotions and fears that each Heart Mom feels. You have inspired me tonight and comforted me. Here are their posts and a few excerpts that through their words, describe my feelings so well.
Amy's Post - Anticipatory GriefHere is the excerpt from Amy's post of Anticipatory Grief...it is EXACTLY how I felt the days and weeks before Mylah's second surgery:
"I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family?"
I lived with that and still do at times - though not as severe, because she is repaired and doing so well - but I lived with this grief, everyday.
Thank you Amy for describing it and sharing your beautiful post. I will continue to pray for your sweet Bodie.
Onto Randi's post:
Randi's Post - Grieving for Those ParentsShe stated,
"I think about us then as if it wasn't really us. I grieve for those parents. I want to just hold them and tell them it's going to be alright. I think about those parents and want to take it all away. It's so... odd. I look back and remember going through the motions. I remember people asking me how I was handling it... they couldn't imagine what I was going through. At that time though, you just do it. There's no choice. I know I've said that before... but now we're at 9 months post surgery and wow, I am starting to not even be able to imagine how I did it. My heart aches for that mother... that mother that watched her child just bleed."
The highlighted red part I have said over and over. People would ask me how I did it, how I made it through. I just did it.
Thank you Randi for your post, my thoughts and feelings were the same.
In all of this reading I have come to realize one thing, we are all alike in our fears, we are all fighting for our children's lives, and that no matter what, we all know there was a reason why our sweet Heart Babies were sent to us. They have taught each of us Heart Moms something.
To Heart Moms reading this, thank you. Thank you for your strength, the lessons you teach, for sharing your thoughts and emotions for others to read, and for your ability to endure. Thank you for helping me heal and make it through one of the hardest trials in my life.
Love to you all,
Lara
