Tuesday, March 01, 2011

Incompatible With Life

We learned that while one baby continues to develop normally, the other one has been diagnosed with alobar holoprosencephaly. This is what ultimately led to the demise of the first triplet. We just learned that it will most certainly lead to the demise of the second. My sweet girl (they’re all girls! Yay!) has severe intracranial and facial deformities that leave her “incompatible with life”. What a strange phrase. It makes my mind go in so many different directions. It’s intriguing in it’s starkness. While the news was tough to swallow, I’m still very proud of her. She’s such a fighter, and while my ultimate goal is to hold this sweet little one alongside her sister for a few minutes in this life, I’m prepared in case it doesn’t happen. Prepare for the worst and hope for the best. It has become our family motto over the past few years, and I have never regretted doing just that.

As you can perhaps imagine, I’ve struggled with writing for the past month. It’s difficult to focus on a project when my mind keeps wandering away to other things. Suddenly my priorities have become very clear, and it’s remarkably refreshing. I unplugged the phone. I stepped back from activities that take me from my family. I’ve learned how to say no when no must be said.

I also realized that writing is how I cope. As I’m contemplating our changing family, and our changing expectations and dreams, I discovered that I was thinking of this whole situation in essay form. I was carefully choosing my words in my head, trying to find the right phrase so I could accurately express what I’m feeling. “I’m sad,” doesn’t cut it. But the essay I wrote in my mind, the one about the conflicting emotions that come with looking at new strollers for one child while looking at infant caskets for the other…well, that is how I think. It’s how my brain works. I find much more comfort in that than I do in anything else. When I put the words down, it is neat and clear and lines up nicely. It swirls in my brain, but it makes sense on paper. It’s a comfort, and it’s a joy.

I hope that you can read this essay one day. While it’s sometimes difficult to accept the road that life sometimes takes us on, there is always happiness among the sorrow. How truly fortunate are we that we were not only blessed with one, but three children? Losing one was terribly difficult, and losing two will be worse. But how wonderful is it that there is a third, this miracle baby who is completely untouched by the anomaly that felled her sisters? I’m very aware of how there is beauty and joy amid the sorrow and loss.

I typed the words “incompatible with life” into my search engine. I was astounded by how many hits came up, how many pictures and stories. That, too, was comforting. Sometimes it seems that we’re the only ones going through whatever situation it might be, but I’m learning that is never the case. There is an army of us out there.


Belkycita said...

Thank you! you are helping me just by sharing your stories.
sending some warm hugs your way.

mama to j and bean said...

I just found your blog as my son was recently diagnosed with WS. Thank you for sharing. I am so sorry for your loss.

Hanna said...

Thank you for sharing your story and I´m so sorry for your loss. I´ve experienced a similar situation. I was expecting triplets, one was diagonsed with alobar holoprosencephaly in week 18. She passed away in my belly in week 31 and the other 2 girls were taken out a few days later and are luckily doing well. I can very much related to what you describe as sorrow and joy at the same time. I hope you find all the inner peace and strength you need to enjoy the miracles inside you on this very rocky journey.

Ronalee said...

A simple "next blog" click and I landed on your page; this page.
I have read about your life and your sadness, but I have also read about your amazing strength and love for your family.
You have a wonderful way of putting your thoughts on paper.I am now following your blog, and I look forward to reading more.

ayin masliza said...

I wish I can share my strength with you.. my pray for you, always..

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LMS said...

You are amazing. The trials you have endured with grace and dignity drive any other person to insanity. I love you, I love your strength and example.

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