Wednesday, May 9, 2012

A Letter to My Daughter

Dear Evelyn,

Today you are five years old.  I should say something like:  "Where has the time gone?" but the reality is that it seems like you've always been here.  I am so proud of the young lady you're becoming.  You are kind to your little brother, patient with Mommy and Daddy, and always a very hard worker.  You try so hard, and no matter what challenges you face, you meet them head on.  After every struggle, you pick back up and keep going, usually joyfully.  I know that you will be amazing in kindergarten; you're ready, and you will love it.

In the last year you have accomplished so many things.  Full days at school, new friends, a new trach, and an even more fully developed personality - complete with an excellent sense of humor.  Speaking of personality, yours really shines right now.  In the last year you've picked up the beloved 'tongue wiggle' which has shown us so much more of who you are and how you think.  For a five-year-old, you certainly know your mind.  From choosing an outfit to telling us what you need medically, you make decisions in a very mature manner.

You've been through a lot in five short years, which is probably why I catch myself thinking you're much older.  I think the strength within you shows in the mature way you handle yourself - so rarely do we see you complain, or cry or have a bad attitude about anything.  I think that your attitude towards life is why, even though from the outside your life seems filled with struggle, we see it as wonderful.  You show us every day how happy you are - and we couldn't be happier to be your parents.

Evelyn, today was YOUR day - and since we just can't help it - there are a few more surprises in store for you over the next few days.  We are so proud of you, and we love you!


Wednesday, May 2, 2012

the beauty of being Broken

We had some friends over for a cookout recently, and I was touched by the interest that a few of the children showed in Evelyn.  She happened to be pretty tired, so she was already in bed when the festivities began, but a couple of children asked to see her, and have asked about her now and then.  I was talking later that weekend with a mom, and we were discussing how to explain certain aspects of Evelyn's condition with children.

In rather amazing timing, Evelyn's vision therapist brought her a gift this week - a special little lamb who happens to have a trach, and who also has her very own book.  Miss Pumpkin Spice the lamb is a medically fragile little girl and her story book gives an excellent introduction to the different limitations and equipment she uses - all while emphasizing Pumpkin's personality and comfort with her situation.

One thing I've been thinking about is that even though Evelyn's situation isn't easily understandable - too many medical terms and complicated explanations - there is one way in which it is very clear.  Evelyn is broken, but she wears her brokenness on the outside, while most of us are broken on the inside.

Everyone struggles.  We just do.  It is part of the human condition, because we simply are not perfect.  Not physically, not mentally and not spiritually.  Some struggle more in one area than in others.  Some wear their struggles on their sleeve, while others' challenges are carefully guarded secrets.  But at the end of the day, there are two simple truths - we are all broken, yet we are all loved.

Loving Evelyn, and accepting her as she is - even embracing her not just in spite of her challenges but FOR her challenges - is a lesson in just how much each of us is loved.  I know that not everyone reading this holds the same faith (particularly in the details) that I do, but I personally believe that there is great comfort in knowing how much we are loved; in spite of and even because of our brokenness.  It is really hard for me to love Aicardi Syndrome; after all, it has caused a lot of pain for my daughter.  And yet...when I think of my life before I knew those words, it pales in comparison to the depth of love and the sincerity of the relationships I share with family and friends now.  It would have been a good life, without AS in our family, but the harsh reality of the syndrome has also brought so much clarity into our lives.  We value our daughter not for who she is, but simply because she is.  I think we're learning to value ourselves and others in the same way.

I guess I have to admit that maybe I do love seizures, and trachs, and breathing treatments, and all the rest - because through experiencing those things with Evelyn, I've felt closer to God's love than at any other time.  And when miss Evelyn surprises us, with her sense of humor or her sassiness - it is magical.  Would I see that magic if it weren't in the midst of so much brokenness?  Would Owen seem so amazing and be so adored?  Perspective matters, and thanks to Evelyn, we've been given the inability to hide from our brokenness, and to feel loved in the midst of it.  What a gift.