The Heart of My Problem

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I have been feeling down and out for the past couple weeks.

Now, I am not looking for sympathy or nervous hugs from near-strangers. I just need to write about it. So, if you are looking for an amusing story or some of my kids’ wild antics, scroll on past this one.

Debbie Downer. Straight up.

The twins are in first grade now and the school makes a big fuss about being anti-bullying. Well, I am here to tell you that you can hold 500 assemblies, concerts, and rallies on the virtues of NOT acting like a tool to your classmates and there will still be bullying. Is it bad parenting or inattentive teachers? Probably neither. Some kids are just b-holes.

One of my boys has had the recent distinction of being a target of a bully. I am not going to be overly specific, but one particular incident involved my son crapping his pants because the bully wouldn’t let him go in to the school during recess to use the bathroom. I know. In first grade this is happening.

It’s ridiculous and it makes my blood boil. BUT, I can handle this situation. We can talk to the principal (we have) and mitigate the situation. (So far, so good.) We can fix this and hopefully teach the bully to stop acting like a bag of feminine hygiene products.

But, that’s not the only self-esteem destroying situation that we are dealing with. And the other one is my fault. And I am completely devastated by it.

If you are just joining us, my sons and I have Beckwith Wiedemann Syndrome. We get to have fun with ultrasounds and the occasional trip to get some super shoes, but it’s nothing too terrible.

The worst thing we have had to go through is tongue reduction surgery. I had mine done as an adult, but the twins were operated on in a Big 10 School Hospital when they were 2 years old. (Because of my current feelings on the job they did, I will not name names as to embarrass anyone but, it’s in a state that Rhymes with “fishigan”. Also, GO BUCKEYES. Ya dig?) And the doctor did not do a very good job, in my not-humble-at-all opinion. Here’s what they look like today, 4 years post-surgery:

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One of my sons recently approached me and told me he felt bad because kids picked on him because of his tongue. (Oh, I have been there, honey.) It enraged me to the point that I had to just go to my room for a while and sit.

After their surgery, I tried to talk to their surgeon about how awful the tongues looked and how I was sure they were still too big. He told me I was over-reacting and, like a non-confrontational person who really didn’t know better, I accepted his answer and went along with my life. He refused to do another surgery. My instincts told me this was a crap answer, but still, I went along with it.

But, the kids are getting teased now and that triggered me. It made me thing about all the other things that were bothering me about their tongues. They are getting cavities in their teeth and having crowding issues because of it. They still have terrible lisps. The tongues are too big to stay in their mouths. It’s not right. I should have trusted my gut.

So, here we are in a pickle. I have contacted a different surgeon who specializes in Beckwith Wiedemann Syndrome and he will fix them.

1000 miles from here. If insurance will cover it.

So, now I fret and worry. I feel like I am standing on the edge of a cliff, teetering back and forth. It’s a very expensive and costly to get to type cliff. I don’t know what’s going to happen. Will a gust of wind throw me over the edge? Should I just climb down slowly and slink away in shame? Can I find a parachute? Where is my cell phone? This is an amazing and crazy view. I should put this on Instagram.

If my boys ever read this, I have a message for them: Believe me I will do anything to “fix” this for the both of you. I don’t think you are broken or ugly. I never did. But, I understand how mean kids are. I understand being embarrassed that your tongue hangs out when you concentrate. I understand how frustrating it is to be treated like you are stupid because speech therapy does little to train that unruly hunk of steak in your mouth. I just wanted to be “normal”, too. I wanted to give you something I didn’t know was possible when I was little. I will move mountains to give you this, still. I am so, so sorry the first doctor butchered you the way he did. Forgive me. 

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4 thoughts on “The Heart of My Problem

  1. I started reading your stories when someone shared the plunger on the butt one, and have read nearly all since then. Although I am not familiar with this syndrome, I am familiar with bullies, having been picked on through most of elementary school, being a little too small, and a little too smart. So I can truly say I feel for your boys, and there is nothing you can say to them that will make their hurt go away, just love them. Reading your post, I can see you will do anything you can to help them, so I imagine there will be a time in the not too distant future when you will take them to see that surgeon, and you will give them what they deserve.
    Contrary to what most teachings will have us believe, I think we DO choose our parents, and I think we are bound together by a force unseen to most (read: nearly all). What my mother gave me was a sense of self, that I didn’t understand for many long years, but now looking back, I can not thank her enough. She taught me grace, altruism, and strength when the chips are down. It wasn’t all rosy of course, no one is perfect, but I learned that too.
    So go ahead and cry, because that’s what mothers do for their children, and then take all those tears, and gather them up like Angel’s do, and turn them into a healing salve. You are remarkable, and I know they chose you because of that. They will make it no matter what, and as long as they learn to laugh – which I am sure they do with you – then they will be OK … this poem comes to mind as …
    http://grandfathersky.wordpress.com/2012/01/08/buckets-full-of-living/
    All the best, Love and blessings for your heart …
    Peter (grandfathersky)

  2. Oy, I would be hard pressed not to say a few words to the bully’s parents.

    I think that you’re an exceptional mom, and I know that you’ll find a way for these operations to happen. Hang in there and damn, woman, stop beating yourself up.

    I think that Kickstarter might be a worthwhile avenue of fundraising to consider. I know that I’d make a pledge, and I’ll pimp it all over my LJ and FB, too. There is always a way.

  3. Hey Tina. I just wanted to send you encouragement. I can relate to a lot of what you’ve gone through working with doctors and having to advocate for your little boys. I just want you too know others understand and support. We’ve had many road-bumps and difficulties, school included. It’s building character and making you all stronger. We will keep you in our prayers and remember, you have to be pushy sometimes when YOU know what’s best for your children. Don’t let the “systems” take control. And don’t give up 🙂 I’ve learned to never settle for the initial answer from insurance.

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