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Riddle Of Love

What do you call something that can't be defined, labeled, predicted, researched, or categorized?

Perhaps you would call that something a riddle. But this riddle has no right answer. There is no cheat sheet on the back that can tell you what to expect. There is no teacher who has the right answer in her book, waiting until the right moment to divulge the eagerly awaited answer.  Neither is there a doctor, rich in knowledge and experience, who can make a sure diagnoses and heal a broken heart. Thus, perhaps you would change the word "riddle" to "mystery," as in one of those great "unsolved mysteries." Leo is surely on the top of that list.
Yesterday we had a visit with one of the prominent neurologists at the hospital to look at Leo man's new MRI slides. I suppose that both Justin and I thought that somehow, he would be able to provide us with some clear answers as to our little guy's new diagnosis and prognosis. I think we should have known better! Since when in the past seven months has anybody been able to provide us with that? He was, however, able to clearly go over with us Leo's brain structure, and explain to us what we were looking at. Leo has almost all of his brain, and most of it looks perfect! He is missing his corpus callosum, which, for those who don't know (Like me before Leo!) is the thin strip of white matter that connects the two hemispheres of the cortex. Its purpose is to pass information back forth between the hemispheres. It is also the piece of tissue that is surgically cut to alleviate epilepsy. It is possible to live a pretty normal life without it, since the brain figures out other ways to pass information. So scratch what the previous post said about Schizencephaly. He does not have that, since the empty place that our neuro saw on his scan is actually where the corpus callosum should have been, and not a cleft or hole in the gray matter of his cortex. Whew! I know that is putting most folks high-school anatomy to the test, but I hope that it's not too bewildering and that you get the picture. Speaking of pictures, here is little lion's new scans. That mass of old fluid is kinda hard to miss! Little man is wearing his own brand of party hat twenty-four-seven. At least now you can see which part of his head will be involved in his cranial reconstruction surgery that is taking place next month.


 These pics might still look scary, but if you click here, you can see how phenomenal they actually are compared to his old ones! Truly a miracle of the highest order and a puzzling mystery from the medical standpoint. So our baby Klingon gets the next series of MRI and CAT scans on the 22nd of April, which also is Great and Holy Friday this year. (It never rains but pours...)
The reason for doing these next scans is to locate all of his blood vessels, arteries, and bone structures for the surgery.
As to his diagnosis, and here we go back to the riddle that is Leo, is that there really isn't one! There isn't just one word that can be used to apply to his condition; not something that I can google on the net and find support groups etc. Yes he does have Hydrocephalus, but even there the neuros aren't clear whether it is a cause of his brain malformation, or the result of. A chicken or the egg scenario if you will. The fact that for some reason so much fluid got trapped is also not typical of most Hydrocephalus cases either!  And as to his prognosis, though it is much more hopeful then that connected to his old diagnosis of Hydranencephaly: not terminal anymore, it does however raise more questions then answers. The brain is such a mysterious and versatile organ that there is no way they can predict to us what he will or will not be able to do, or what his future might look like.
After that visit, Justin and I realized just how hard it is, as parents, to not know anything about your child's possibilities or limitations. Or to know why things went wrong in the first place. We will probably never get answers to our questions, never really understand or define what happened and why and there will be no-one to help take away our fears, and that is a bitter pill, one that seems even more bitter when presented with the basic facts of our situation. However, when we face our son, when we look at his dear little face, somehow all that angst washes away. None of that matters when I wake up in the morning, and the first thing I get to see is Leo's gentle smile. He wakes up first and waits patiently, just cooing and playing with his hands until I blearily drag myself out of bed and lean over his crib. He looks up right at me and breaks out in a beaming grin as if to say, "There you are! I missed you and am so happy to see you and did I tell you how much I love you!" Every morning, it melts my heart. Every night before falling asleep, I can't wait for that moment tomorrow. Tomorrow and every other tomorrow forever.
That is all I know, and it's enough for me.




Comments

  1. Glory to God! We are so excited to read this amazing news.

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  2. What joy it was to read your latest news! Our God is truly a great God and a God of miracles!Leo has blossomed on your strong faith, unconditional love and lots and lots of prayers.The little Leo man is a very very special child,and you are very very special and blessed parents.That never comes without a high price.And although his future still holds alot of uncertanties,you know now more than ever that with God EVERYTHING is possible.And meanwhile today is all we really have.Praying that Leo's gentle smile will greet you every waking moment of your life! Sending lots of love and prayers your way.

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  3. Glory to God! This is so amazing and wonderful! :)

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  4. The joy I feel at every new post is overwhelming. Our God is amazing, and we know so little. Thank you, thank you, thank you for sharing this journey and the trials and delightful news! I have to thank God for giving you little Leo, as his journey and yours has helped to strengthen my own walk. Thank you.

    ~Nicki

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  5. This post reminded me a lot of me, and my boys. I still wonder why they have their visual impairment - was it something I did or was exposed to? Is it now a genetic thing that might pass on to my grandchildren? So frustrating not to know, but there's nothing gained by dwelling on it for long!

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  6. P.S. I hope he grows up to be a Sci-Fi fan who appreciates his Klingon heritage! ;-)

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  7. Such a ride of fears, love, prayers, joy, anguish, heartache smiles :-). God has brought a constant with our Leo...his eyes are always drawing you in, his smiles bringing smiles to our faces and his giggles, helping us to forget for a moment one's own troubles! Thank you God, thank you Leo, and your parents who have shared with us this roller coaster ride of uncertainty. Many prayers coming your way as we face yet another fearful ride with surgery just ahead. The pictures of his MRI before his shunt and now are quite amazing, but he was kinda telling us how brilliant he is :-)

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  8. Dear ones.....none of us knows what tomorrow brings for our children....we just THINK we do. For you as for the rest of us, it is all in God's hands. Can you think of a better place?
    Affectionately, Claire

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  9. I am just so thrilled and amazed and happy for all of you. The human brain is beyond amazing and your love and your faith match it equally. I will continue to keep you all in my thoughts and prayers as your journey continues.

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  10. This is wonderful to read! Glory to God! I just love his smile- it melts my heart.

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  11. We are amazed and so happy! We have often said on seeing his pictures that Leo's face has all the expression of our own 18month old. Our prayers are with you. Love, the Monges

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  12. Wonderful news guys! What a testimony of faith and the power of prayer. What a miracle.
    Marcy

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  13. What great news! Temptations are in Great Lent, but so are great blessings. We miss y'all down south :) Love from the SVS bunch and your brother in Christ.

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  14. This little guy is going to go far: that I'm convinced of.

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  15. Leo's smile always melts my heart too. . . what a little blessing

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