Our Daughter’s Unique, Special and Adorable Ear

A month ago I was in the post office with Grace. There were two sweet little boys and their dad; and as all children are, they were very interested in Grace. After asking a million questions about her, the older of the two turned to his dad and said, “look at her little ear.” The dad, completely mortified, tried to shovel his sons comment under the rug and hoped I didn’t hear. I tookIMG_9604 the opportunity to show off my daughter’s incredibly unique, special and adorable little ear to the first person who ever commented on it.

Grace was born with Microtia and mostly likely Atresia. Here’s a formal definition taken from The Ear Community:

Microtia is a congenital deformity affecting the outer ear (pinna) where the ear does not fully develop during the first trimester of pregnancy. A Microtia ear is often smaller in size, can have a peanut shaped appearance, only have a small nub or lobe present, or be completely absent at birth.

Atresia (also known as aural atresia) is the absence or closure of the external auditory ear canal.

We had no idea of this until Grace was born, and we’ve been learning more and more about what this will mean for our daughter and our family. Often times, Microtia is accompanied by other things – including kidney problems or nerve problems in the face. She, thankfully, seemly has no other “issues” accompanied with her little ear.

Grace recently had an extensive hearing test called an ABR. This ABR test determined that she has excellent hearing in her normal ear and a moderate hearing loss on her little ear. While she has no ear canal that we know of, she can still have a hearing aid  on a headband that will vibrate on the bone behind her ear. Don’t ask me how it works, because I haven’t gotten that far in my research. Grace will get one of these in a month.

IMG_9857The reason I write about this is most people notice her ear, but don’t ask. I wouldn’t ask either, to be fair. So for those of you who’ve met Grace but are afraid to ask – it’s Microtia.

A sweet friend asked me how I felt about it… if I was upset that she had this. And the honest answer is yes. Yes, I’m upset that my child isn’t “perfect” (as if there’s such a thing). I’m upset that she has to grow up with a small ear and answer to stupid people who will make fun of her. I’m upset that she could potentially be behind her peers in speech. I’m upset that she needs a hearing aid. And I’m selfishly upset that I have to pay for all the doctors and equipment that will help Grace live a “normal” life.

Why couldn’t this happen to a family with excellent insurance? A family who didn’t have to pay a sick amount out-of-pocket for these doctors and hearing aids? [On a small side note…I’d love to smack those people who complain about paying a co-pay. Or who complain about paying whopping $1000 to have their child delivered at the hospital. Boohoo. I digress…]

Grace could have something much, much worse then a small ear. She’s beautiful and healthy with a blooming personality. She doesn’t have a life-threatening illness, nor a sickness where she will need to pump medicine into her body daily. She will live a normal, comfortable, blessed life (well, at least that’s the hope). So while it’s normal to feel disappointed about her small ear and feel frustrated that all my friends have babies with normal and perfect ears… I love my daughter’s unique, special and adorable ear. And Chris and I hope we can teach her to love it, too.

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Reflections on Motherhood: Two Months and Counting

I feel as though I needed to write this post to assure you all that I am still alive. And Grace is still alive. And Chris is still alive. We are all living – running solely on coffee and love. Mostly coffee.

Two months have passed and things have gotten better. Not easier… but certainly better. Not sure if Grace is crying less/hating her life less; or if I am getting used to her misery and tuning it out. I think it’s a little of both. After months of trying to figure out why my child is so miserable, I believe I’ve finally thrown my hands in the air and accepted that this is just how it is. Don’t even try to make a suggestion on how to fix it. Because I’ve tried it. Out efforts include:

  • Colic Drops (Probiotics)
  • Happy Tummy heat pad
  • Giving up dairy
  • Giving up about EVERTHING in my diet
  • Bouncing on the yoga ball
  • Car rides
  • Football hold
  • Gripe water
  • Gas drops
  • The womb app
  • The swing
  • The mamaroo
  • Doing bicycles with her legs
  • Chiropractor (for the record I’m convinced this is the only thing that makes a consistent difference)

It would be unfair to say she cries all the time. I am counting my blessings where they come. She is a great sleeper – particularly at night. Also, she’s started smiling and cooing. And while it sounds incredibly cliche, this all gracemakes the misery worth it. My shirts are covered in leaking breast milk, my arms and hands are consistently soaked with drool and there’s poop under my finger nails (because who has time to wash their hands)… but it’s really worth it.

In just the last week we started putting her in the crib to nap. Previously she was napping in a wrap while we wore her, or in our arms. I cried when she took her first nap in the crib and felt completely morbid because I thought her silence must have meant she died. I’ve also started putting her to bed on her own before us. She goes down between 8:30 and 9:30. And it’s glorious. Seriously. I have time to write this blog post.

And while I now have a little bit of time to myself in the evening and several hours during the day while she’s napping – motherhood is still hard. I’m currently on a diet where I eat only meat, beans, vegetables and fruit. I am hangry all the time. I’m freaking starving. I can’t go out to eat. I can’t go to anyone’s house to eat. I spend a small fortune at the grocery store on flax milk and quinoa pasta. The worst part is – I’m not convinced it’s doing anything. I will be having a heart-to-heart with the pediatrician next week about this. I cannot live this way.

Phew! Now to positives. Grace is so stinking cute. She’s growing and learning every day. She’s laughing, “talking”, trying to imitate my hand movements, kissing (with her mouth wide open) and bringing me incredible joy. I feel as though my greatest success as a mom is our great breastfeeding relationship. She’s a great eater and I love feeding her. In my next life I want to be a lactation consultant and empower women to breastfeed for the health of babies and the incredible bonding it ensues.

We’ve also been surrounded by incredibly loving, caring and supportive people. People that we are proud to surround our daughter with. To help us love her, pray for her and teach her. It takes a village, and we have an amazing village. Right now, these people are mostly loving on us, encouraging us and praying for us, but we know that it will translate into raising a beautiful, loved, woman of God. And this is the true desire of our hearts.

So again, we’re still alive. I could not believe the amazing outpouring of encouragement I received from my last post. The amount of women – some who I know and many who I don’t – who shared that my experience was also there’s gave me great hope and encouragement.

Hopefully I will get back to crafting and cooking soon and will post something other than an update on motherhood.