Friday, January 21, 2011

What a Difference a Year Makes...

We're coming up on the anniversary of a day I'll never forget, and I think it's a good time to look back. January 27, 2010, my life changed forever. It was the day we found out our baby would be born with Spina Bifida. To this day I remember events by whether they were pre- or post-diagnosis. I don't know why, I guess it affected me that much... that I looked at everything different after. But I'm getting ahead of myself, let's rewind.

Sometime in early October....

Coleman was out in the middle of the Great Lakes somewhere, sailing on a tugboat. He was on a schedule where he would be working for 28 days and home for 14 days. We didn't know how long this would last and when and if he would return to his regular job. We were thankful for the work but it was hard on both of us. Needless to say, starting a family was the last thing on our minds. But I had a hunch... so I took a pregnancy test.  I immediately called Coleman, waking him up, to tell him I was pregnant. And I started crying. I was scared, I was 300 miles away from my family, I was all alone in big house, I was not ready to be a mom, I had just started a business, I had so many things I wanted to do, I had massive student loans, I had a tiny 2 door car, and THIS WAS NOT THE PLAN. Coleman, of course, was calm as ever and assured me that everything would be alright and everything happens for a reason. Yeah, ok.

Fast-forward a few months...

It honestly took me a while to be excited about the prospect of having a baby. I knew that I would love the baby the moment I saw it but it just took some time for me to adjust to the new plan. Coleman went back to his regular job in the office. He was still gone a lot but we were used to it. And finally, the day came that we would find out if we were having a boy or a girl. I wanted a girl so badly! I would walk through stores and see all the cute girl clothes and I just had to have a girl so that I could dress her up! I knew that they would be checking other things at this ultrasound. You see, at 15 weeks, there is a blood test that can check for markers that indicate Spina Bifida and other abnormalities. So, at 15 weeks, my doctor asked me if I would like to get that blood test. I asked if it was really necessary. I intended to keep the baby no matter what the results, so I figured it didn't matter. Except.... I had heard about this surgery they can do on unborn babies if they have this thing called Spina Whatevida. She explained that there were places performing fetal surgeries but that they would check for Spina Bifida at my 19 week ultrasound by looking at the blah blah blah blah blah (my eyes glazed over because none of this would EVER apply to me)..... so I didn't have to get the blood test if I didn't want to. I didn't. And for the record, I'm glad I didn't. It gave me 4 more weeks of ignorance and innocence. So back to ultrasound day, it is crazy how vividly I remember some things. The waiting room was really full and I was playing Tilt on Coleman's brand new phone. I feel sick to my stomach every time I see that game now. We went in, the ultrasound started, and surprise! It's a boy! Honestly I was a little disappointed... but I couldn't wait to get out of there and start calling people only the ultrasound kept going and going.... I remember her taking pictures of the spine and of the head. But we didn't know any better... we figured that's what they always do. When the ultrasound was over, she let me use the restroom (they make you drink 32 oz of water before every ultrasound... where they proceed to jab you in the bladder) and then showed us to an exam room. We sat down and I opened up a magazine. I remember saying to Coleman, "I wonder why we're in here? I hope nothing's wrong." And then I went back to reading my magazine. A few minutes later my doctor came in and greeted us.

 And then she said, "Something's wrong."

"What is it?"

"Spina Bifida"

"What does that mean?"

"Some level of paralysis. Blah blah blah blah. You'll need to have a C-Section. Blah blah blah blah."

"Are you sure?"

"Yes, blah blah blah, lemon sign, blah blah blah. But it doesn't usually affect them mentally, so if you're looking for a glimmer of hope..."

Only I wasn't looking for a glimmer of hope, I was looking for the rewind button. I wanted to go back to my  plan, which was obviously so much better than this one.

I remember her putting her hand on my leg and saying something like, "I'm so sorry, it's always the good parents..."

Good parents? Five minutes ago I was whining because I wanted a girl. I felt so selfish and dumb.

I remember for the next few months the word paralysis just kept floating around my head. At random times, it would just pop up. We went home and suddenly google was our worst enemy. I wished there was a filter I could click that would show me only good results. I desperately wanted information but was terrified of what I would find out. And what I did find out was scary. I learned about closure surgery, hydrocephalus, shunts, bowel and bladder issues, catheterization... and I was scared.

The next week we had an appointment with the high risk OB in Grand Rapids. They would be taking over my care for the remainder of my pregnancy. The appointment was at 7am which means we had to leave around 6. It was still dark outside when we got there. How incredibly depressing?! We sat through an hour long ultrasound. Suddenly ultrasounds weren't so much fun. We analyzed everything. She took a few pictures of the baby's heart, so is there a heart condition too? The doctor came in to talk to us and let us know that other than hydrocephalus that is on the high end of normal, the baby looked healthy.

And she asked us one question. "Do you wish to terminate?"


"Ok then let's talk about where we go from here."

I was terrified and I wanted desperately for this all to just go away but I truly believe that decision was never mine to make.

I'd say that was the lowest point... from there on we started seeing glimmers of hope that started with this beautiful face. The day I answered that question was the day I saw a picture of the sweet baby boy I would meet in a few short months.

How can you not fall in love with that face?!

Later on we went home and did some more research. Only this time, instead of finding statistics and scary pictures, we found families. We found stories and pictures and videos of beautiful, happy children with Spina Bifida. And FINALLY, I could picture it. I could picture our life. And it was happy.

You probably know the rest of the story. We met some of these families in person. We met and fell in love with their kids. We couldn't wait to meet our own. And on June 8, 2010, we did. And we love him to death.

While Spina Bifida doesn't define Lewis, it will shape who he is. He wouldn't be the same without it. I believe he'll be a better person because of it. I know I will.

I'm glad God chose me to be your mommy
I love you, Lewis


  1. Thanks for sharing this Lauren. You know, you were one of the first stories that google led me to and I am so thankful for it. Love Lewis' huge smile!

  2. I'm a mess!! Nothing like crying first thing in the morning! :) I think that we all remember things as being pre or post weird how that happens. Such a beautiful post that SO MANY people can relate to. You guys are the best and Lewis is so blessed to have you as his parents. I think that you should bring him to coffee again next time so I can pretend he's mine again. :)

  3. I hope that this is one anniversary that will start to numb with age... Your story is so like mine.
    Talking about finding families online, being able to picture your life with spina bifida. I wish THESE are what comes up when you type spina bifida into google!

    And that drooly face says it all - ADORABLE!

  4. Same as Leigh I'm crying as I read this! Your words describe all of our similar experiences so beautifuly. Very well written. Lewis is such a lucky little man to be your baby! You are a great mommy! I lok forward to our boys growing up together and redifining what it means to have SB.

  5. Oh gosh, tears streaming down my face. I can relate to how you felt when you first found out you were pregnant. Lewis is such an awesome little guy and I can't wait to watch him grow. You and Coleman are wonderful parents.


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