It’s not as easy as baking a special treat, or giving some extra hugs.
I can’t fix it. And it’s going to be here forever.
A little over a year ago we knew nothing of Cowden’s Syndrome. We knew we had a smart, funny little girl with lots of medical issues. We knew we were stumping the best of the best doctors. We knew we were getting by.
And then they figured it out. And the world started spinning out of control. Just over a year ago, I got my diagnosis too.
I guess it hit me hardest today. I never know when reality is going to come at me like a two by four. But, today it did a number on me.
We went to the orthodontist for her monthly visit. It has been just over 4 weeks since the braces went on. She has been a trooper. Mature as anything. Careful. Diligent. Typical Meghan. And yet, the gums are starting to overtake the braces. It’s almost unreal to watch. We brush – often together. With an expensive fancy toothbrush. I help her floss, and still they grow.
We were both a little worried that the orthodontist would yell at her. Reprimand her for poor hygiene. But, he was great. I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan. We have been with the office 2 years, and he knows her gums are “extremely reactive.” So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.
But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.
Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.
Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth. I will never forget it. They kept her awake. Gave her (not nearly enough) Valium, and I had to hold her as they burned it off.
Apparently I am not the only one who will never forget it. She was beside herself when we left the office, and remained on edge all night. She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.
I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.” To which she, in her most grown up voice said, “I know you are, and it’s not your fault. But you can’t fix it. You can’t fix me. No one can.”
At that point trying to reassure her that she wasn’t broken would have been pointless.
I let her go. She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.
He shoulders seemed a little heavier. More of the weight of the world on my baby. I can’t fix it. I can’t do anything to stop the firestorm that will come our way in the next decades. I can only be vigilant. And hold her hand. And love her.
Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier. Maybe I am wrong, just wishful thinking. I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.
Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time. It is hard to know what to call it. I am not in any way prepared to give up my membership to my home church, and they know and respect that. Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological. No one was judged. Everyone was comfortable. Mixed emotions 2 and a half hours later, past everyone’s bed time. Our children finished playing, and we left – tired but peaceful. It’s nice to know where we will be every week for a while. Its kind of like finding that first permanent job after years of subbing. It is also nice to have my husband by my side. God works in very strange ways.
We had planned to be out of the house at 9 to go apple and pumpkin picking this morning. We were a bit delayed by the late night, but we made it. It was so nice to see Meghan happy. She doesn’t ask for much, but had specifically asked for this.
We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in. Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.
So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.
I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.
I think we made it about three aisles before a look of horror crossed Meghan’s face. Then there were the tears.
She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off. Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.
So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.
I really was stunned. There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again. Daddy took Meghan to some neighboring stores. I quickly finished the shopping, and we headed home.
The car ride was quiet. I was twisted. This kid has had enough. More than enough. A break for one WHOLE day would be nice. As I sat, I shed a few tears of frustration. I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency. My husband decided it was and called the cell phone number soon after we got home.
He called us within an hour. He is a good man. But, he was away. “Clip it,” he told my husband. “Take the wire and the bracket off. I will fix it next week.” And so the electrician turned orthodontist, and off came the bracket.
And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week. We will both be told her oral hygiene is poor. I am sure of it.
Cowden’s means overgrowth. The gums are supersensitive. Reacting to the braces. Trying to swallow them up. We floss, we brush, we poke and prod. No success. Certainly we are trying out best.
Nothing is simple. Every battle is crowded by another. It’s not just the Cowden’s Syndrome. And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities. It’s the overlap. That’s where things somehow always seem to get tricky. Right there in the overlap.
Daddy made a tasty dinner. Chicken wrap with fresh guacamole. Things were looking up. Then, they started to decorate the BIG pumpkin.
Sleeping peacefully. Potentially a dreadful weekend, salvaged by a clipped wire. Emotions all across the spectrum. Another day in the life. Another day of sorting through the overlap.
And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-
We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.
Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.
We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.
So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.
Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.
He looked at me a bit stunned and asked, “How old is she?”
“She just turned 9.”
He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.
So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.
“One more thing Mom.”
I stopped and turned around to look at her.
“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”
She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.
She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.
So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.
I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.
And then, I let her read. If it bothers her. It comes out. Its only fair.
But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.
So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….
And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.
We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.
We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.
Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.
She is sleeping peacefully, all content pre approved. 🙂
Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!