Tag: rare syndrome

I’ve had a breakthrough. It wasn’t a sudden rush… it happened over time. I’m almost overly proud to be Landon’s mom. 

That has to be a very strange statement for people to understand. Everyone is proud to be their child’s mother. Let me explain.

When we brought Landon home- at first- I was feeling really private about what she had. I didn’t want anyone to know. I didn’t want my small circle to tell anyone. I was really secretive about her malformed ears, somewhat different shaped eyes, how incredibly tiny she was. I can’t explain exactly why. I wanted to protect her…. and me.

It’s like the story in my previous post about Holland, it just wasn’t what I had expected. I wasn’t prepared. All my preparations had been about the nursery, what diapers to buy, strollers, diaper bags, Baby Bjorns. About how to calm a baby, how to breastfeed, how to swaddle. I read baby center everyday.  I had always fantasized about being a mother. I was so proud to be pregnant.

So when the geneticist, nurse practitioner and nurse marched into my room 5 hours after my c-section and told me they were moving her to the NICU “because she has deformities and a rare syndrome” … my world was shattered.  I had a very healthy pregnancy – even working out the day before I had her.  The word surprise doesn’t cover it.  Did I mention they told me when I was alone and on 3 different types of drugs? Yep.  Enough about that day though. 

So I just didn’t want to tell people.  I didn’t want to face the stares, the “poor yous”, the discomfort that people feel when they realize something is wrong with your child and they don’t know what to say to you. I wanted to live in my bubble of Landon, Bo and Kingsley and not face the scary world. 

I posted photos on facebook at first when you couldn’t see her ears. I bought 30 hats.  I just couldn’t deal.  But slowly, over time… things started to change.  I met my Clarke School friends.  We got our baha hearing aid and met other babies who also wore a softband. I became educated about the syndrome, hearing loss, how the ear even works.  I emailed with a mom who’s child also has Treachers and found another mom’s email that lives in NYC. 

Slowly I came out of my shell about what she had. I wrote about it on here and I started to feel normal again.  Hundreds of people emailed me and told me their own very personal stories of adversity, fear, and loss.  The healing really took hold of me. I started to tell people her story- without crying.  That was major.  My voice would catch a little at first, but I could make it through the story without waterworks. It got easier and easier. 

We put on our softband in public, in the bjorn, and would gladly answer strangers’ questions about “the little box” on her head.  My pride started to swell. We just attended our first baby party and I could not have been prouder of every little thing Landon did. Proud of her softband, proud of her Treachers. Beyond proud that I’m her mother. Proud that I can help other people. That other moms trust me to tell me what they have been or are going through. 

I feel whole again. We will have tough days. I will cry again. I will have to face scary surgeries and therapies.  But my pride is here to stay and it’ll only grow from here. I love her so much I could burst.

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.

xoxo

eloise

I mean she got her hearing aid today. I sang to her and played with her all the while knowing she could hear me. So why am I sitting here crying? Why am I sad?  I guess the start of the day has a little to do with it.  The ophthalmologist appointment felt like a formality honestly. I wasn’t expecting another diagnosis. I wasn’t expecting this man who I waited to see for an hour and a half to turn around in his swivel chair and say to his resident “she has strabismus."  Um whaaaat? I had to ask him to spell it twice. Strabismus is essentially lazy eye. It might correct itself, it might not. It might mean yet another surgery. I notice it very rarely, but I have noticed it. I thought it was just another thing that all infants do considering they don’t focus on anything for their first month or so.  These days of specialists that are all focused on her diagnoses get to me by day’s end.  It’s just frustrating that her life will be filled with doctors and facing diagnoses. So frustrating.  When my mother and Bo ask me why I’m sad, I honestly can’t give a clear answer.  My only answer I can drum up is "because I’m her mother.” I feel these things more deeply. I cry b/c she doesn’t know enough to cry. Because she’s poked and prodded. I cry because I’m her mother.

I’m also crying b/c of the whole nanny vs daycare thought process and money that goes into both. I cry b/c I won’t be taking her to Clarke come the New Year if we can even figure out how to afford a nanny to get her to Clarke. It’s not the  normal tears of a going-back-to-work mother. I’m a mom of a child with special needs. I know those needs better than anyone on this planet now. I want to take care of her myself. 

Anyway, enough of my pity party. She looks so precious in her softband- it’s light pink and looks so cute on her. I’ll post pictures soon.  Good things of today- the buses came around regularly, we always got a seat, she drank her bottle quietly and entirely in the waiting room, we were on time everywhere (shocking) and home before the snow got really bad.  All in all, no true reason to cry.

In fact, I think it’s time to pull myself together now.