Tuesday, March 4, 2014

Life is Hard.

I am not even sure where to begin or what to say.  Okay...breathe...

We have been anxiously awaiting the results of the amniocentesis and now I am wishing we could take the results away.  My husband texted me this morning and said that the results are in and someone will be calling him back shortly with the results.  Looking back, this was a red flag, but I thought nothing of it.  Minutes went by and I could just feel the knot in my stomach growing, waiting for these results was like nothing I have ever done, I can't even describe what it felt like.  Then my husband, who is supposed to call me, comes barreling in the door with tears in his eyes.  I immediately knew that our world was about to be turned upside down, more than it already has in the past week or so.  Our sweet baby has been diagnosed with Trisomy 13, you know the one that the lady told us was pretty much out of the question.  My heart just sank and I grabbed my husband's hand and we just cried together.

Trisomy 13, I never even knew that this was up until a few weeks ago, now these two words have forever changed our lives.  The odds of a baby having trisomy 13 are 1 in 10,000.  When I saw this statistic, I knew that we were chosen by God to endure this trial, there is no other way to explain the odds of that statistic picking us.  Does that mean we are okay with all of this?  By no means, but I do know that we serve a God who loves us and cares for us and keeps our best interest in mind.  He knows what we can handle, and what we cannot handle on our own is where He meets us and carries us the rest of the way.  This trial has already been extremely hard and I know that it has only just begun.

We met with our genetic counselor today after receiving the devastating news about our sweet little baby.  She too was shocked at the results of the amnio test.  She discussed what this means in terms of my pregnancy and shared the gut wrenching statistics of trisomy 13.  Most babies do not make it to birth and of those that do, their lives are short-lived.  So here we are, almost half way through the pregnancy and we are thinking about stuff I never thought we would need to discuss.  We have talked about the interventions we want to happen, quality of life, photographers, memorial services, just crazy stuff that no pregnant mom should even be thinking about.  I still feel like I am in a dream and just wish I could somehow get out of it.  We were given the option to terminate our pregnancy and my husband and I both immediately shook our heads no.  We both knew that that was not an option and not a path we were willing to take.  This baby is ours and we have made the decision to love and care for it as best as we can, no matter what the future holds.

Are we scared?  Oh my, so scared, this is not something you can ever be prepared for.  I am scared of what's to come, but I am going to make every effort to enjoy this little baby inside me and give them the best life possible, just what they deserve.  I am scared of people asking me about my pregnancy, what will I say?  I am scared about delivering a baby knowing my time with them is so limited.  I am scared of loosing my sweet baby.  I am scared of saying goodbye.  I am scared of the next few months because I have no idea what any of this will be like.

My husband made a really good point this evening and said that this baby will never know anything except love and happiness.  And that warms my heart knowing that.  We are blessed to be this baby's mommy and daddy and he is blessed to be our child.

In our previous pregnancy, we chose not to find out the sex of the baby because we wanted to be surprised.  Due to the unexpected news today, we decided it was best to find out the sex of our sweet little one.  The verdict is, we are having a little boy!  We have spent all evening picking out the perfect name for this little guy.

Asher Keoni White.

Asher:  happy or blessed in Hebrew
Keoni:  God is Gracious/John (John is our grandfather's name on both sides) This is obviously Hawaiian, since this little guy is our Hawaiian baby!

Please please please continue to pray for us, as our journey with baby Asher has only just begun.  This little guy has already taught us so much about life and I know there is a whole lot more to come. Thank you for the continued prayers and support, we can feel them all the way out here in Hawaii.

1 comment:

  1. Dear Erin, a mutual friend of ours sent me your blog to read. We have so much in common - both having lived in Hawaii, both attending Ship for Social Work, and both receiving a fatal diagnosis for our very loved little boy. I am SO sorry you're having to endure this. Please find me on FB - Meghan Dingle. And feel free to read my blog (meghanandkyle.weebly.com) I also think you may know my hubby?? Anyway, I'd love to talk and will definitely be in prayer for your sweet little one. Hugs, Meg