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No Thank You Labels.

And this is Lia, she's 4 months old. Awww how cute! Etc etc etc. This is all that is needed to introduce a normal baby. Her name and age makes her who she is. A "special needs" baby? The name and age comes last. First it's usually a list of incomprehensible medical terms. My baby was born with this and that and oh yes, his name is Leo. This has really been bothering me lately, that my son is defined by some ambiguous medical label that immediately alienates him from every normal reaction. It bothers, because to me, he is who he is. A sweet, happy baby that tries his hardest to make us proud. Not some kind of medical anomaly, or a statistic. He is unique and mysterious, just like any other infant just starting out in life.
Lately we have been talking more and more about his diagnosis and the scans that they have taken of his head when he just a couple days old. It all seems like some kind of misty nightmare that lurks in the mind; strange and surreal. Did it really happen? Is it really true? How can we let machines and tests define our son? Well the answer is that we can't. Because so far, he has proven all those wrong. Yet there is still this sense of unease, like we are hoping for something outside of ourselves to tell us that it's all going to be ok. Or even better, someone qualified and with data to prove it, of course. We want to grasp at anybody, or anything to heal our hurt and take away our deepest fears. Someone else to shoulder our pain and sense of helplessness. Someone else to make it better, and most importantly, tell us what to believe and expect. Chances are, you take your kid in for a check up-the doc says, give it a couple days, and the sniffles will be all cleared up- life will be back to normal. You know what to expect and you trust that it will be so. Whew, that's peace of mind. With Leo? No way. Nothing to expect, anything can and will happen. No one to tell you it's all going to be ok because here is his label, and here is what it says about him in some medical textbook. Probably all parents have to do this at some point in their children's lives, they have to let go of all expectations, fears and security. Basically? You have to let you kids live.  Christmas is usually when we think of and celebrate Christ's birth, it's also a time when we should remember his mother, and her parents. At the age of 3, they let her go. They took her to the temple and gave her up, because they knew she was "special," that she had a different destiny from other children. They just knew it, not because they were told to, the responsibility and faith was all theirs. This is what I pray for us. That it doesn't matter what it says about Leo in his extensive medical files, because that isn't where I look to define him. I look at his smile, listen to his giggles, and that is enough for me. Don't put a label on my kid please, but look at who he is, here and now. Who cares about tomorrow?

Comments

  1. Beautiful post. I've been thinking a lot about labels lately and this gives me more to mull over. I love the video. He is absolutely adorable!

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  2. It's great to hear from you. I have been looking for a new post the last couple of days! Thanks. :) I also love the video, especially when he rubs his eyes. Also, Leo's cheeks are really filling out. :)

    We are still praying for you all the time. You are the first (and often the only) people Michael wants to pray for each night. He says, "My pray Papa, Anna, Nika. Je-us help Papa, Anna, Nika, Papa, Nika, Anna, Nika, Anna, Papa"...and on and on, louder and louder. Then we ask what about Nika's little brother. He shouts, "Je-us help baby Yo-yooooooooooo!" Anyway, you are in all of our thoughts and prayers. We really miss you all. :)

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  3. Anna and Justin,
    You are very strong couple, I am sure it doesn't seem like it, but God is doing a mighty work.
    I loved seeing the video, reading of your thoughts and praying for you and your future.
    Love, Deb

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  4. Yes, every day of Leo's life is questioning our common knowledge of time and purpose. But it also teaches us a new trust in God who has the only complete "data" on our life, and who's shoulders are strong and faithful and support every moment of it. And even if tomorrow might never come, today is precious. Today we have a chance - "to see a World in a grain of sand, and a Heaven in a wild flower, hold Infinity in the palm of our hand, and Eternity in an hour." (William Blake)

    Love and prayers!

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  5. Leo is a beautiful, four month old boy. His purpose is to be a "love magnet" and he is filling his purpose perfectly. He is also a prayer magnet...and God is pleased.
    Blessings and hugs, Claire

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