Wednesday, August 17, 2016


It was recently brought to my attention that some people don't realize I still update this blog.   I don't do it often, as time goes on I find less and less things to talk about. I still update though, randomly and sporadically as things come up that I think I should write about, usually every few months or so.  I especially don't want people who come here looking for help to think I'm not here anymore. I'm still here.  I'm still listening.

Today I received an email and it prompted this post. It's comments and questions I get in emails often, and I'm happy to continue answering those same questions in more detail via email.  I also want to post it here for those  who may not be ready or comfortable reaching out.   It was a mom who chose to terminate when faced with their Potter's Syndrome Diagnosis.  She was struggling with that decision and had a lot of unanswered questions about a chance of survival if she had chosen differently.  She struggles with the choice to terminate instead of carrying her baby boy to term.

If you've read my journey, you may already realize that ultimately I made both choices.  I carried Gabriel to term, then at 36 weeks had to make the choice to induce labor so that I could have the natural delivery I wanted for him and to hopefully get to see him before he passed away.  I made both choices, neither choice was easier than the other. We also chose comfort care for him, meaning we wouldn't intervene to try to keep him alive  longer - we already knew what the outcome would be.   I often wonder what would have happened if we had chosen to put him on life support, maybe his lungs would have developed enough to keep him alive. Maybe he could have lived long enough to qualify for a kidney transplant.  I don't dwell on this curiosities though, because I know at this point there has only been 1 long term survivor of BRA, and that survival is one that is well beyond my understanding. Babies with the same treatment have not survived.

So there's a few topics I want to chat more about here.

You are not alone
First things first. I'm not here to judge the path you choose. If you chose to terminate instead of carry to term, you can still contact me for questions or support. I feel like maybe I've isolated those who didn't carry to term, and that was never my intention.   Regardless of the ultimate choice, you have to make the decision that is best for you and your family in the moment.  No matter what that choice is, it's the right one.  Regardless of what that choice was, it was a hard one.  Neither direction is an easier route than the other.  If I could tell these mom's one thing, it's please do not dwell on the choice you had to make.   It was a personal choice, one you had to make for yourself, your family and your baby. You had to dig deep and think long and hard about which direction to turn when both paths lead into a deep dark scary cave.

I'm told often how gracefully I handled the pregnancy and life of Gabriel.  The truth is it wasn't always graceful, but I allowed myself that. I gave myself  the grace to allow weak moments to happen naturally and doing that gave me space to be recomposed for the next moment, whatever that may be.  This is a journey that most people cannot fathom. You've had to hear words and make choices that most people can never grasp.  If you are just on the start of this long journey or maybe in the middle, give yourself grace!  Give yourself grace to be weak, to be a mess. Give yourself grace to stay in bed a little longer to cry. Give yourself the grace to grieve as long as you need to. Give yourself the grace to smile if you feel it, or laugh if it happens.  Give yourself grace to feel whatever emotion you are feeling as you are feeling it.  Give yourself that grace because when you come out of that weak moment, you are going to come out recomposed  and ready for the next moment whether that's a happy one or sad one.   Little by little those weak moments will be less and less, but you'll find yourself stronger and stronger.

Surround yourself with people that are going to give you compassion.  People that are going to join you for a cry in bed for a few hours before pushing you into the shower because you stink.  People that will pull you in for a hug when you break down crying as you walk by the baby section of the store.  Nobody can tell you the right or the wrong thing to think or to feel right now.  Know that what you are feeling is whats right for you.

Another milestone is approaching. As I scroll through my Facebook newsfeed lately, I've been seeing a lot of kids going back to school.  Evelyn will be going back in a couple weeks and joining 1st grade!!  I have a 1st grader!!

What that also means though, is that Gabriel would be starting his school journey this year. He'd be entering preschool.  That is a little hard to swallow for me.  Some of the milestones we've already passed were easier than I anticipated. I dread his birthday each year, but last year I sat and looked through his photo book as I remembered kissing his face. I cried, I laughed. We set up his tree and had cupcakes.  This milestone however, feels a lot like his first birthday. Like a huge setback in this journey.

I watch as other kids get excited about their new adventure, as I wonder past the school supply aisle, I wonder what backpack he would have chosen. What would he want on his lunchbox?  What things would he want me to pack for his snacks?  Would he want a ride to school or a ride on the bus?  What would become his favorite subject?

All these things come to mind as I ponder who he would be today.  And when I take Evelyn to school in a few weeks, I'll wonder what it would be like to be dropping him off too.

These milestones never end.  As soon as I work through this one, It'll be a point in life when he would be graduating Kindergarten, then entering 1st grade, then graduating elementary school, eventually driving and graduating high school.  I'll always wonder who he'd be today.

Thoughts for all your moms who travel this journey alongside me.

1 comment:

  1. Because of faith in Christ Jesus and the forgiveness of all sins upon baptism in the Lord we will all be together one day. At the coming of the Lord. Trust that he is in the presence of Jesus and is living a wonderful existence that we can not imagine.

    1 Thessalonians 4:16-18 ESV /

    For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord. Therefore encourage one another with these words.

    You are still stronger than I could have ever imagined you would be as a child.
    Love you