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Leo.

Leo Clement, AKA: The Little Lion Man.


So there is all this talk about Leo being so normal etcetera etcetera etcetera, but what does that even mean? Because for obvious reasons Leo is not normal, hello, remember his birth? The seven plus surgeries and numerous hospitalizations? The reason for this blog?

Well yes.

In his four year movie, (re-watch it here, I know you want to..) I try to stress the point, over and over, that Leo is his normal, that even though he is different from you or me, he is also at the same time, no different. I think I would believe this to be true even if he were more impaired; physically, mentally, medically, whatever, if in other words, he still wore the terminal label of hydranencephaly. In those first few grim months of Leo's life I joined every single support group out there for this condition, and to my astonishment (total newb), I learned that most of the parents and caregivers of such miracle children share this same sentiment. Even in the most dire of cases, the child was something special and yet also a very normal and integral part of the family.  
When Leo's diagnosis changed and the doctors told us the only thing they can safely predict about his future is that he might not die before the end of the year. They couldn't say wether he would ever be able to walk or talk, and they stressed this point to me over and over again, even though I didn't really care. I didn't care very much about those things, because all wanted was for him to live.  As long as I got to wake up to his beautiful blue eyes and goofy grin every morning I'm a happy camper.  This is in direct opposition to what I hear on the news these days about abortion and reasons for it. Your baby won't walk. He won't talk. Because of this he doesn't deserve to live. He won't deserve your love. Horrifying is it not? I won't get into that now, you can read my post about abortion here.
What I mean to say here is that though I'm astounded and blissful and humbled about Leo's miraculous development these past few years, I would also be ok if it hadn't happened. That whatever would have happened would have been ok, because he is after all, the little lion man and comes with his own purpose and I think that applies to all children, special needs or otherwise.
However, because no one can really deny his accomplishments, I suppose I get to brag about them once in awhile just know that I'm doing it most humbly and gratefully, ok? 

I was cleaning out my facebook pictures recently and came across some that I don't think I've shared on the blog, and they reminded me that's it's time for another all about the boy post.



In the above picture, you can see that the lion boy got into the pantry, pulled out a bag of pasta and deliberately crafted his favorite letter : The Letter L. 
This was awhile ago, and though when he first did this, I had to go into the bathroom and have a nice little happy cry, since then it's become a norm and he will use anything lying around to make all kinds of letters. I trip over markers and crayons and blocks and bottle caps; all manner of debris, spelling out most of the alphabet every day. It's always pretty awesome, I must admit.

He and preschool are getting along like gang busters and the other day while waiting in the car to pick him up I saw him literally running to the playground after the other kids. When I saw that, I remembered how laboriously he worked at crawling and then with walking how hard it was, how many times he fell and how many times I despaired of him ever getting it, here he is three years later- running.  There are no words. 



Last week we also saw his neurologist for a routine check-up, where he mainly played ball with his doc, showed off, and tried to escape out the door numerous times. I was struck again at the stark difference in this appointment in comparison to those sad, earlier ones. We even talked about starting a wean off one of his anti-seizure meds. He's been seizure free for almost eight months; since we moved into the new house.  I'm not sure what it is that we are doing right to keep the seizure monster away but I hope to keep on doing it for a nice long time and that the wean from one of the drugs won't ruffle any seizure monster fur. It's the weaker of the two drugs and he gets a fairly minimal dose as it is, even so, the thought of one less chemical in his little body is pretty exciting.


Not sure what is more silly about this photo, the laundry basket occupation or the girly strawberry shortcake sippy cup.
His vocabulary is growing by leaps and bounds. Though he always managed to make himself understood even when he was a baby, it's pretty awesome to hear him shout "I love you!" at me from the backseat of the car. 


He has always been a pretty good sleeper, but lately he's been expanding his territory. The guy takes up more room in the bed than a fat hippo. Frankly I would take the hippo. My kidneys and spleen would concur. (Lion boy has restless legs at night and perfect aim.) You can read about all that in my post from last month here.



Have I mentioned the curls? 
I. Love. The. Curls.
Especially after bath-time. 
Like here:


Hair style is always a bit of an issue, because there are parts to his skull that I don't want to advertise but so far hair thickness and growth haven't been his problem. The kid has gotten his head shaved by neurosurgeons pretty much every year of his life and they really don't have any talent in hair dressing. That's probably why they stick to brain surgery.


Church, and going to church is a big part of our life, and it seems at least now that it's an even bigger part of Leo's life.
This is an older photo from last year but it's one of absolute favorites because it clearly shows the connection Leo has to things spiritual. He loves attending church and has just learned to cross himself. He will call out "amen," and "lord have mercy" at any chance he gets. Sometimes, he will just stand quietly, listening and observing the worship around him. To be fair, sometimes he also gets it into his head that all these people standing around are a perfect recipe for a rousing game of ring-around-the-rosey, but thankfully that doesn't happen very often. As a priest's kid I basically grew up in the church and yet even to me, it's amazing and humbling to see his total acceptance and pure joy of it. 
So yeah, Leo is a pretty special kind of normal, and though all this stuff looks like what any other toddler may do, the fact that Leo is doing it is what makes it so darn special. Four years ago I would never have imagined this. When I first got pregnant I was imaging a future that at the end of my pregnancy I had to let go and bury. Then the new (awful) future we thought would happen never did. And now, looking back into the past, I know better than to have any expectations for the future. The present is amazing enough as it is.




Comments

  1. Beautiful, Anna. Thank you for this.

    ReplyDelete
  2. Alexandra GonzalezApril 27, 2015 at 11:28 PM

    Christ is Risen!!! So happy to read this update! Glory be to God for all things. I hope to meet Leo one day...he is such an inspiration.

    ReplyDelete

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