Straight from a mama’s heart

It was the first time I ever noticed the, “what’s wrong with her?” look.

We had been expecting it. That first day the diagnosis was postulated, sitting in the pediatrician’s office with the geneticist’s report in our lap, we googled. Some of the first images that popped up on that inevitable google search were that of mouths. Mouths with lips pulled back to reveal terribly abnormal sets of teeth.

It’s the part of her syndrome that tormented her daddy, her protective papa bear daddy, in the first few weeks. The short stature, the scar of a heart repaired, even the extra fingers…those somehow seemed less significant to bear than a mouth with unexpected and malformed and missing teeth – would this make our girl lose her smile?

Discussions at children’s lessened the angst some. There were things that could be done, measures to be taken as she grows to make her as comfortable as possible, and to make that smile as complete as possible. I buried it as somewhat of a future issue. One to be processed and dealt with in the future, on another day. For now her toothless gums were just like any other infant’s, her grin just as endearing.

And really at this point, Bella does look like just another baby. People don’t usually notice anything strange about her – not even her extra special fingers. They’re usually too captivated looking at her eyes. Those deep baby blues have a way of locking contact and peering so intently…she has a way of making you feel known. And those cheeks. Need I mention the cheeks?

On this day though, we were on an emergency trip to the dentist. For a couple days we had been feeling a tooth attempting to break through her gums. And then during a particularly fussy morning diaper change Bella opened her mouth wide and I caught a glimpse of something. My first thought was – “how can she possibly have oatmeal still in her mouth?” I bent over for a closer look and was shocked to see a tooth fully erupted, and hanging from tissue below the gumline.

And so off to the dentist we went, me with warnings from some of those first diagnostic appointments of loose natal teeth and aspiration echoing in my head. We happen to go to an absolutely fantastic pediatric dentist in Wenatchee. However, Bella’s syndrome is extremely rare (random call out to the internet – anyone else out there have a kiddo with Ellis Van Creveld? Know a kiddo with EVC? We’d love to be in touch with another family familiar with the waters we’re traversing…) so not surprisingly, the dentist had not seen a tooth like this before. And so she asked to take a picture to aid in consulting with children’s.

We attempted a picture in the exam room, but the camera wasn’t working, so we headed out to a chair in the general area of the office. As I walked out I noticed a grandma and a child smiling and chuckling at Miss Bella with the delighted expressions she usually evokes from all but the most grumpy of the population. We sat down, Bella on my lap, and they pointed the camera at the tooth. As images of it popped up on the large computer screen, I saw it. Out of the corner of my eye.

I watched that sweet grandma’s face shift from delight to, “what’s wrong with her?”

I knew there was no ill will in the shift. It was mere curiosity, a wondering at what would cause an aberration like that in a baby’s mouth.

But still. Emotion rose in my mama’s heart. My mama’s heart that stubbornly wanted to proclaim, “There is nothing wrong with her. She is beautiful. She is perfect.” My mama’s heart that instantly wanted to shield her, protect her in some way from the looks and questions of that day and the many days to come.

They were unhappy with the pics captured on the dental camera, so we were ushered back into the exam room for pictures and video via iphone (isn’t modern technology amazing?). Our dentist gave me her personal cell number so I could reach her at any time with changes or concerns (once again, we have an incredible dentist), and promised at her soon to be lunch break to research and consult with children’s.

That tooth was removed a few days later, with the warning that yes, it was not viable and so had to be removed, but that there would not be another baby tooth…perhaps not even adult?…in its place. We asked if she was likely to have any other teeth like that, and were told a tooth like that was quite uncommon, but we would just have to wait and see. Oh there is so much wait and see with this little one.

I shoved the whole experience, and the somewhat uncollected emotions, down once again…filing it in the “to be dealt with in the future” folder of my heart and mind.

But then another tooth broke free last night. And sure enough, today it was dangling like the previous, making feedings once again far less comfortable for our sweet girl. And I knew. There goes another tooth. We don’t even know how many teeth she’ll have, and we’re already removing two.

And this time the emotions couldn’t be contained and filed away.

I look at her and I see indescribable beauty, and treasure, and grace…beauty and grace and blessing that stops me in my tracks and like a sunbeam directing me to its source, points me straight back to the one who so carefully crafted her. And I so desperately want others to see that as well. And most importantly, I want her to see it. I want her to see the beauty. The beauty in lungs that breathe. The beauty in being a chosen and purposed child of God. The beauty in being a vessel that displays the glory of God.

Can I be honest? I fear the voices of this world, the voices of this society, will hiss a poisonous lie in her ears and declare…”not beautiful.” And I’m so afraid she will believe it. My heart quakes at the thought, and my human response is to want to shield her. From questions. From stares. From comments. From this world.

But Jesus. Oh, but our sweet, tender savior. He whispers to my trembling heart…if you shield her, she’ll think she has something to hide. Remember my words, ‘No one lights a lamp and puts it in a place where it will be hidden, or under a bowl. Instead they put it on its stand, so that those who come in may see the light.’ I have created her, her very form, so that she might be a light of my glorious grace.

And I know. I know if I want her to see that she was made to glorify God in her mind, her heart, and her body, it’s going to start with me. It’s going to start with me not running from questions, not running from stares. It’s going to start with me acknowledging, unashamedly, with no offense at the questioner, the unique ways in which she was formed.

But oh the tender balance of parenting. The tightrope that we walk. I want her to know that she was made with purpose, that she was uniquely created not by chance, but by intent. I want her to know that her very being, her very breath points to the extraordinary power and grace of her Creator. But I don’t want to teach her that in a way that falsely and dangerously puffs up pride – for the same is true for all of us. My breath, my continued existence moment by moment on this earth is also by sheer miraculous grace. And so I want to teach her in a way that she can humbly but unabashedly proclaim, “This is how I was made for the glory of God,” and then in the next breath acknowledge and call out and celebrate the ways in which the other also uniquely proclaims that same glory.

And this is why we carefully chose, and hung in her room, the life verse, “For we have this treasure in jars of clay to show that this all surpassing power is from God and not from us.”

Because when we get down to it, it’s all for Him. It’s all about Him. Praise the Lord.