chronic illness – Page 2

Being a Mom is challenging, but rewarding.

Working full-time is necessary, and carries some definite benefits, but huge time demands.

Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…

Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.

Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.

But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.

I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.

I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?

My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.

Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.

So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.

She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.

There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.

So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.

People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.

I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.

And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.

There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”

This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.

God Bless the Boston PD, and all the emergency workers, and all the brave citizens.

We stand with you. We thank you. for reminding us that there are so many good people in the world.

I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants.

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.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

love you forever — “Love You Forever” is one of my all time favorite stories.

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.