Shaking it off


So… we got a call this morning from our genetics doctor confirming that Landon has a mutated gene. I thought for 5 solid minutes that this meant that we were in the clear. That I could take a real deep breath. That we could have future children without the fear of them also having TCS.  That’s not so.  What that means is simply that she has TCS… she contains the gene mutation that is the syndrome.  I don’t know why but I thought this testing was going to tell us if we were carriers OR if her gene mutated on it’s own (de novo gene).  Alas, more waiting. Bo and I now have to have our blood drawn and tested. In talking it through, I got an overview of what decisions we might have to make in the future. If we are carriers. If we want more kids. It’s terrifying. And we still have to wait on the craniofacial group- no word yet on their report. It’s frustrating.

These emotions piled onto yesterday’s light blanket of sadness. Yesterday I spent the day on craniofacial and microtia (ears) surgeons’ websites, blogs and facebook groups for families. I thought I was fine. Just researching things I’ve tried to block out. Finally looking at what I didn’t want to read for 3 months.  When Bo called to check in, I told him what I’d spent the day doing. And I started to cry.  Hard.  It’s so easy for me to cry these days.  What triggered it though?  Reading about kids struggling to ride a bike b/c their baha hearing aid didn’t fit under the helmet. I then thought about soccer, swimming, horse back riding. Things I loved as a little girl that I want to do with Landon. Things that I know we will do. Somehow. She can do these things you see, but how can she hear while she does them?  So maybe when we get the implants it’ll be easier.  Maybe.  What do I know.  I can’t seem to read up on these things without crying.

In talking to one of my best friends last night she mentioned something I think I’ll try.  Not to think about the surgeries until she’s at least 1 year. Give myself a year just to play with her. Not allow these sites to bog me down. Keep up on technologies like hearing aids. But not fixate. Not picture her in a miniature hospital gown. That will come. But not yet.  Not yet. 

For now she’s just a little bug who is starting to hold her head up as if to fully take in the world. She looks around mesmerized at the lights on our Christmas tree. Fascinated by the sparkly ornaments. It’s precious.

So I’ll shake off yesterday. Shake off this morning. Make this promise with myself for my one year.



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