Month: November 2012

Shaking it off

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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

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Welcome to Holland

In our parent/child group therapy session this morning, our wonderful leaders gave us this passage to read. This resulted in 5 mothers crying over our little wonders…over our own trips to Holland. It’s an incredible thing to be gifted with a child with special needs. I probably would have felt like some sort of tiger mother even if she didn’t have these needs, but I sincerely feel like I’m a different person. Forever changed. If we are blessed in the future with another child, I will be stronger and more vigilante b/c of our amazing journey with Landon. I can’t imagine it any other way.

Welcome to Holland by Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.“

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Thanksgiving

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.”

I am incredibly thankful this year for my family. For my precious daughter who was meant to be mine. For my loving and eternally patient husband. For my sweet and very loving puppy. For our generous and supportive parents. For my sister who makes me feel better and sane everytime I hear her voice. For my girlfriends who are my family and who love me unconditionally. For the Clark School and the people who work there and the parents that were strangers but are now friends. For answers. For my full heart.

I love this quote above as it speaks to so much of my life right now. My mother always taught me during times of despair to recite what I’m thankful for, but that’s easy to forget to do when you’re older. Remembering to be grateful for what I have not just at this time of year will be my goal. It’s how I want to live my life for Landon.

Cheers to gratitude… today and everyday.

Xoxo
Eloise

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Stuck

I’m sorry for not writing for a week. I’ve been stuck you see.

We’re waiting on an email containing our genetic testing results AND an email with a report from our craniofacial team detailing little bug’s big plan for surgeries and prognoses.  So every time I open my computer, my iPhone, my iPad, I look for these emails and don’t see them and sink back into the couch. So much lies in these documents- whether we’ll have more children for one (deep breath).  I’ve let this trepidation stand in between responding to emails, returning calls and communicating with more than my 2 month old and my dog during the day.  I started to realize yesterday that I was stuck in the same spot on the couch just waiting on other people.  So last night the bug and I learned some and sang some new songs, read some Beatrix Potter (how bizarre are her stories btw) and she slept on my chest for 2 hours. 

I realize it’s not about those reports. It’s about her. It’s about loving her fully, hugging her constantly, and enjoying my baby girl.  Going back to work is looming and it’s really time to let all this TCS-related crap just rest for a while. 

My beautiful baby girl is off to Virginia in the morning to celebrate Thanksgiving with her Grandma Lulu (my mom of course) and I certainly have a lot to be thankful for.

xoxo

eloise

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Celebrations

Celebration #1: Bug weighs a whopping 8lbs 8 ounces NOT just 8 lbs (thank you very much NY Pres for scaring me)

Celebration #2: We got her hearing aid! I mentioned this earlier but it’s just so exciting I can’t stop marveling when I put on her little headband. There hasn’t been a major reaction yet leading me to believe that she actually could hear me all along, now it’s just more clear. 

Celebration #3: I left the apt today sans babe and sans dog and got my hair did. I then went to the gym to remember how to run

Celebration #4: She outgrew her nb pjs. Little girl is a growin up.

Celebration #5: Landon is 2 months old. I feel like we’ve lived years in these 2 months. I guess that’s how you feel when you love so big.

Cheers to celebrating little things in our lives every day.

xoxo

Eloise

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Craniofacial

Today was a good day, a full day, but a good day. A LOT of doctors. A lot. They at least came in by discipline so as to not overwhelm us. The wonderful coordinator had been through these clinics since she herself grew up with a cleft palette.  She took her experiences with her and now has implemented this new way of running things. Anyway, we did get some great advice on her feeding… an hour isn’t normal for a bottle :). We got referred to see 3 more specialists soon, then the regular check ins with all of our current specialists. That part felt overwhelming… to me at least. The coolest part of the was meeting the plastic surgeon for the ears and to learn about the three different types of ears she could get. Although it’s surgery, it’s exciting surgery for her.  The worst part? Her weight. She has barely gained 3 ounces in 2 weeks. With it supposed to be an ounce a day, this isn’t good.  Off to get our shots at the pediatrician tomorrow and to spend more time talking about weight and feeding. As soon as we take one step forward, three back.

Anyway, off to do some tummy time which is the same thing to her as nap time.

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