Monday, June 16, 2008

She's Not Perfect

When Amanda was born, she was perfect. My labor was pretty short, so her head was nice and round, not misshapen from a long trip down the birth canal. Her cheeks were round and full, and her skin was smooth and rosy.

At her two week doctor's appointment all was well, but at her two month appointment the doctor noticed her swollen eyelid. Over the next month or so her left eyelid was swollen and a little bruised looking. Concerned (or just nosy!) strangers and relatives had questioned me about what it was. They gave me advice, "It's probably a clogged duct. Use cold or hot compresses," or simply asked, "What happened to her eye?"

The problem is that I didn't know. The doctor had looked at it and had an idea about what it might be, but that she'd take another look at her four-month appointment. In those two months, what I later found out was a capillary hemangioma--a vascular tumor on the top eyelid of her left eye--became more and more obvious--sometimes it was redder and more swollen than other days, but it was always something that was "not normal." I had to field questions and advice from strangers without having a definitive answer as the doctor was waiting to see what would develop in the next two months.

When we returned to the doctor two months later, she confirmed that it was what she had thought. I asked her what caused it, and she said without thinking, "It's just a birth defect."

"A defect," I thought. "My first-born child is defective. She's not perfect."

That led to a referral to a pediatric ophthalmologist who we saw at least every eight weeks, and frequently more often than that. We patched her "good eye" for half her waking hours so that the tumor wouldn't rob that eye of its sight. Before she was six months old, she was prescribed her first pair of glasses. The glasses on such a young baby and the patching along with the appearance of her eye continued to attract questions and stares.

As we drove out of the doctor's office after I had picked up her first pair of glasses, silent tears welled up. "My baby," I thought. Loss brought the tears to my eyes. Loss over what, I'm still not sure--the idea of a perfect baby, the problems that wearing glasses might create for her (and me), concern for the long term affect on her vision?

When we changed doctors when Amanda was about four years old, all signs of the tumor were gone (they generally shrink on their own)--so much so that the doctor would not even had known if I hadn't have told him.

She still wears glasses, but at nine-and-a-half years old, so do many of her classmates. She no longer has a visible imperfection, but I've long since given up the idea of having a perfect child.

***

Reading Jennifer Graf Groneberg's book Road Map to Holland brought up these memories. I reviewed the book over at 5 Minutes for Mom today. You can win one of three copies, too. Please go check out this book that I could not recommend more highly.

16 comments:

janice said...

What a blessing for you that you learned early on to let go of "perfection" for your children. It is such a common illusion we chase as new mothers - isn't it?
Wonderful post!

Monica @ Paper Bridges said...

when we all get to heaven, what a day of rejoicing that will be...

when we all see Jesus, we'll sing and shout the victory.

got that song stuck in my head. victory over weird tumors and even glasses. thanks for sharing.

monica

Katrina said...

Thank you for sharing this, Jennifer. Though I already knew the physical details of this story, your post revealed a deeper glimpse into your heart.

Code Yellow Mom said...

My mom had a similar experience with my younger brother - his was a clogged tear duct but they eventually had to do surgery and it left a scar the length of his little nose. But the night before his surgery, after she was crying over his "perfect" face that was going to now have a big scar, she took him for a pre-op appointment and there in the office was a couple with two small children who had already had several reconstructive surgeries and were in for yet another. She realized suddenly how remarkably blessed she was but more importantly how all of these children are beautiful and precious and couldn't be loved more, even if they were "perfect." Thanks for sharing this experience - we really do sometimes expect or want perfection (physical and otherwise) and feel loss when it doesn't seem to materialize. What is perfect, though, is that we get to all work on our imperfections together in families. (My imperfect kids are helping me iron out a lot of rough spots in myself, that's for sure.)

Bev said...

Touching post that opens your heart up to us, and I'm sure many moms will be encouraged as they can so easily relate to how you felt. We all need encouragement as we go through this journey of motherhood.

Adventures In Babywearing said...

It broke my heart when Noah had to have glasses at 2, it's such an obvious sign to others that something is different about your child, but those "different" things make them unique and I seriously think they have a much stronger spirit than most. Something not different, but extra special.

Steph

Susan (5 Minutes For Mom) said...

Thank you Jennifer for sharing this profound post.

It really helped me understand some of my own feelings about my own babies' imperfections.

jennifergrafgroneberg said...

Thank you for reading my book, and for writing about it! And thank you for letting my story resonate in your own life.

What a relief it is to let go of the idea of perfection--even though it might hurt a bit, at first. It's truly a blessing!

Andrea said...

I've heard of that book.
I think it would be a good one to read.
My son had a swollen eyelid when he was born. Later, we found out it was congential Horner's syndrome. I was so thankful to my husband for his gratefulness that my son was healthy and that his swollen eye (ptosis) was simply a cosmetic thing. I focused on that, not on that he was not "perfect".

Beck said...

I remember how crushed I was by the Girl's speech issues - something that I don't even THINK about anymore.
Powerful post.

heather said...

Since I don't have kids, I'll say that on the other side, growing up with parents who believed in you, supported you no matter what, loved you always, pushed you toward excellence and yet never judged for less than perfection made for a happy childhood and healthy adulthood.

TheAngelForever said...

Thank you for writing what so many of us have experienced in many different ways. My son was still unable to walk at almost 20 months old. It was not alarming to us at first because he had been talking sentences for so long. We finally had him evaluated by Early Intervention and found out that he is low muscle ton and is hyper-flexible (at 5 he can still put his nose to the floor when sitting and stick a foot in his mouth if he wants to. Each day my little guy struggles to balance his body, but has come so far. Most people would never know, but I do and still wonder what I did wrong.

Hugs to you for sharing your story with everyone.

Tonya said...

Great post. Also I just got your email and I replied. It went to my junk mail again. So sorry. Do you know how long it will take once it gets sent out?

Amy said...

I remember when my little girl was newborn and my sister in law commented on how her eyes were too close together and maybe she would have strange ears. This just crushed me as up until that point I saw my baby as perfect and the most beautiful thing that ever lived. I began to look at her like maybe there was something wrong.

After awhile though I took another look and reminded myself just how gorgeous she truely was, as the beauty of her soul shone through at even that young age.

It can be so hard as we want the world to see our children as we see them and it's hard to see how they don't. I'm glad God has given me that though as a mother so I can continue to appreciate the real beauty in my baby!

Stephanie's Mommy Brain said...

My second boy ended up wearing one of those helmets because his head was going flat from sleeping on his back. I remember worrying about what "people" would think - that he has seizures or something else wrong with him. I had to get over myself. I reached a point where I didn't care what other people thought. What did it matter? Even if he did have seizures or other issues he is a valuable and wonderful little boy.

Now my disappoint at my daughter inheriting brown eyes instead of my blue eyes is a whole other ridiculous story. God certainly shows us the imperfections in ourselves through our children!

Jen Rouse said...

I think that as a mother we fear anything out of the ordinary for our children, and a birth defect (I can only imagine) would be particularly painful.