What’s it Called?

I have been reading up more and more about my sons prenatal diagnosis lately because I am currently writing a memoir about everything that has happened. It has been placed in my heart to tell our story and to give God His Glory.

It will be possibly a three part series of life and lessons. And I am so honored to get this opportunity.

But as I am reminded of the contacts I made during our pregnancy… I get more and more upset about it. There were people that we met with… counselors, doctors, nurses and case workers. All to prepare us for the death of our son. I fought these people off so much so that the last few weeks they pretty much left us alone to deal with this on our own. And I don’t blame them… you can’t help someone who doesn’t want to be helped. But… I am upset because… so many have discounted how far my son has come and how long he has survived. They have discounted the emotions and trauma that we went through.

And maybe it’s because on days when he is struggling the hardest I think back on those dark days. But there are Facebook posts and pages that I followed and took solice in during my pregnancy. And now, two years later, I receive those “On This Day” reminders … and from a conversation I unfortunately had a few weeks ago with a bereaved mother… I get so upset about the entire experience.

As if my son is not a miracle… just a baby who survived.

And I struggle with that. For some reason I can’t let that go. The words she gave me… shame on me for saying my son is a miracle


I still feel the raw emotions of hearing those words, “he will not survive”. The doctors faces, the room, the ultrasound, the photos… I will never forget those images. I have locked those away somewhere deep and far in my mind. I know that in order for me to move on, I need to come to terms with what had happened. And especially with the NICU stay. I felt like I was traumatized and tortured for 5 months. There was even a time that someone mentioned I was torturing my son for keeping him alive. Torturing him…

So, I want to know, exactly, what is it called? I wrote a post called Other Mother’s a few weeks back when all this drama went down with this other lady. And I called ourselves the Other Mother’s. I was talking to another kidney mom and we were both feeling this way… how because our sons are still alive, it is almost like everything they have gone through is “no big deal”… Yet people don’t take into account the numerous times we have faced death in the eye. The phone calls, the emergency hospital trips and stays, the painful procedures and surgeries… I love our hospital but to call it our “second home”… that’s not quite ideal.

It’s a special life that we live.It sucks but we are Blessed. That’s pretty much what our lives have been.

I really just got upset at a post I saw on Facebook and just wrote this… i am definitely not looking for pity … i don’t need that. i get that enough. But I was just wondering out loud …. what’s it called? Going through the fatal prenatal diagnosis…. overcoming everything that is supposed to kill you… surviving… If it’s not a miracle… what is it??


Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s