Sandy Hook Elementary School

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

I can remember as if it were yesterday, walking the halls of the elementary school where I am a teacher, in the hours after I had heard of the horrors of 9/11. I attended the same school as a child. I knew that the lives of the young second graders I now taught would never be as happy and carefree as mine; some 20 years prior to that day when everything changed. It was an eerie feeling. One that I knew would be realized gradually. It was a moment I have reflected on countless times through the years.

Friday was a busy day. I never stopped for lunch, and it was 6th period before a colleague mentioned the shooting in Newton, Connecticut. At that point the details were still extremely sketchy, and while I was troubled, I was not nearly as disturbed as I would come to be over the next few hours.

As the details of what had transpired at Sandy Hook Elementary school began to unfold this weekend, I was, like any other compassionate human, horrified and appalled.

I send my child, my heart and soul, to a school a few minutes from where I work. The staff is dedicated, and caring. Honestly, I never gave her safety a second thought. But, after visualizing the entrance to her school – so close to the cafeteria, often full of children. Well, my mind when left unattended can do some awful things.

And then there is my own school. The school I attended as I child. The school I have taught at for 16 years. The children who are the siblings of others I have taught. The families I have known for years. I think about these children often. I talk about them at home as if they are part of my family. I live each day with the knowledge that I am entrusted to educate, and keep safe, someone’s “heart and soul.” This is not a responsibility taken lightly.

I know the exuberance of a room full of 6 and 7 year olds. I know the electricity in the air in the weeks before Christmas. I know the love in a teacher’s heart when she hides her students in closets, or tells them she loves them.

What I do not know, what I can not imagine or comprehend, is the heart of a man who walks into a school building and kills – 20 children and 6 adults. I can not know. Nor do I want to.

It is not my place to judge him. It is not my place to publicly state his wrongdoing. I have a strong faith, and I leave the sorting out of all that to God.

I know with confidence that those who died, as young innocent children, or their protectors, were welcomed warmly though Heaven‘s gates. They are not the ones I worry about anymore.

As a parent of an ill child, especially one that suffers with a ruthless rare disease like Cowden’s Syndrome, I do not know a day of peace. I worry from sun up to sun down about tumors, and growths, and headaches, and hot flashes, and lingering maladies that don’t suit a 9 year old. I am always at the ready because I don’t know what we will be fighting next. But I can tell you this- there is no part of me that would trade places for a second with these families.

I have the blessing, if you will, of knowing something about our enemy. We have the ability to be proactive. We can battle. We can prepare. We get tired, but we can win.

Evil ripped these lives from their families. There is nothing they could have done better. or differently There is nothing they could have fixed or prevented. They went to school. They went to work. And they died.

So, what can you take from this whole nightmare?

I will take from it that I need to do more of what I do every day. I need to hug my daughter and my husband. I need to tell them I love them every time it crosses my mind. I need to serve ice cream for dinner sometimes, because its fun and silly. I need to look less at the clock and more at them.

I need to prepare for the holidays with a different mindset. I need to organize, but not to a fault. If the cookies don’t get baked – I need to buy them. If the cabinet’s don’t get cleaned, I need to serve extra wine so no one notices. If I can’t cook it, I will order it. And come Christmas Day we will sit as a family. We will count our blessings, and remember our lost loved ones. We will understand that we are all different – and we are all the same.

The battles we face in our house are real. The journey is not always easy, but every day that we are together is a blessing. And there is no promise of tomorrow together on this earth.

Monday will be here in a few hours. I will send my little girl on the bus to school, with an extra lump in my throat. I will head the short distance to my school where I will look at everything with an eye towards awareness. I will look at my students and remember the lumps in their parents throats. I will look at my colleagues and respect that we all have the same goals in mind.

And when my phone rings, and I get the news about my spleen – bad or good. I will take a deep breath and keep on swimming. No matter how tough things can get, it could always be worse.

May God, and all the angels above surround the families and friends of all the victims. And may they all rest in peace.