March 28, 2013 – beatingcowdens

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes. Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas. I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.