Every Scar Tells A Story

Dear Mira,

We had a busy week with you.

It started with the most terrifying 5 minutes of our lives, a trip to the ER and a drive down to Delaware. There was a hospital and an MRI and a surgery. There were prayers and there were tears (mostly mine). There were incredible doctors and nurses that took the best care of you. There were balloons.  There were goodbyes and a cautious car ride home. There were lots of hugs and kisses and a few more tears.

You see, those terrifying 5 minutes and the ER visit were a warning sign that something just wasn’t right. The event we thought was taking your life, actually saved it.  It alerted your doctors that we had to do a little more thinking about what was going on inside of you.  We spent a lot of time talking, did a few more tests and we found our answer.

Foramen Magnum Stenosis.

Don’t worry, Mommy and Daddy can’t say it either.

I’ll try to explain. On the bottom of your skull, there is a hole called the foramen magnum that your spinal cord and other important tissues run through.  100% of babies with Achondroplasia have a much smaller hole and 10% of those babies have a REALLY small hole, so small that the brainstem can get a little squished, causing all sorts of problems. You know how you have trouble holding your head up, or rolling over, or breathing well while you sleep? It was mostly because of this.

So, they fixed it.

You went under anesthesia twice in 2 days, had IV’s coming out your arms and legs, were woken up every 4 hours for vitals and couldn’t eat when you were hungry. You looked at me with fear in your eyes and didn’t understand why this was happening to you. I wished that I could explain that this pain was temporary, that the doctors were fixing a part of you that was broken,  that this would all be over soon.

Ten hours after your surgery you were back in full force. The smiling, happy, delicious girl that we all know and love came back to us. The nurses adored you. They fought over who would come in and brush your hair and watch Frozen with you. Every 12-hour shift left you with a new best friend.

They say you won’t remember any of this, which makes us happy, but I do want you to remember something. You, my love, are a warrior. And not in the way that parents say their baby is so brave for putting their face under water or going down a slide by themselves. At 10 months old, you withstood a major surgery. In the words of your neurosurgeon, “This was a big deal“, and you took it like a champ.

So, when you reach behind your head and feel the scar back there, I want it to remind you of what a strong, resilient little girl you are. How through fear and pain you were able to hold on to your joy. Everyone keeps telling us how strong we are, but it is your strength that holds us together.

They say every scar tells a story. I have one too, my love. From the day we officially met.

They say every scar tells a story, and this week was just a part of yours.

I am so proud of you.

Love,

Mommy