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Melty Wax Heart



Fall is always an introspective time of year for me. Full of changes and transitions, it always takes me somewhere I wasn't prepared to go, or in the case of Leo, a somewhere that I didn't even know existed. A crazy land where there doesn't seem to be anyone in charge,  money seems redundant and/or scarce, (take your pick on that one) and plans change seemingly just by pure whim (trust me, there is NO rhyme or reasoning here). Hmm actually this crazy land is starting to seem more familiar by the minute. Never mind, it's a crazy we are all used to at this point. 


Leo resents the changes though. It's rough, being him sometimes. Life doled out some of its' hard knocks with a heavy hand to him, and earlier then it does to most of us. Little lion almost lost his roar there for awhile. 


But time, they say, heals any wound, though in Leo's case, he may need a good decade or two. But I can say with some authority on the subject; that he definitely got his roar back, and maybe in spades too since the traumatic events of his first year on this earth. (Is it just me or is that baby lion waaay too high on the cuteness scale?!)


Just a quick re-fresher on those traumatic events: 
1. A tough c-section with major extra cutting (I was the recipient that time) but I'm sure Leo wasn't thrilled about being tousled about for forty minutes while the surgeons tried to remove his ginormous noggin from my nether bone structure. Anywho...
2. Shunt placement and major drainage of ginormous noggin after free-loafing it around the NICU for five days while playing the "not dead yet" game with the medical staff.
3. Going home and really getting know the poor shleps God saddled him with.
4. Shunt revision surgery to up the drainage action.
5. Numerous MRI's with general anesthesia most of the time.
6. Enter seizures. Enter big bad medicine guns to blow them off the face of the earth. Or at least his brain. EAT DIRT SUCKERS!!
7. Major-major-ultra-super-big-heavy-boss-surgery to completely reshape the freaky excuse for a skull mother nature gave him and drain a significant cyst in his brain.
8. Close to a month in the hospital trying to recover from the above big bad, and from some severe edema from heavy blood loss.
9. 7 months and many funky hats later, Leo's cranium is opened up again this time to bring his forehead out and build up his eyebrow ridge. Only a week or so in the hospital this time.
11. Major seizure turned into status epilepticus, lasting close to three hours in which he went into medical overdose and was hooked up to an EEG for 48 hours. He left eventually with a new seizure med.


You can open your eyes now, or remove the pillow, or whatever object that you used to block out the long and sad list of Leo's trials.
Because it is all over. But I won't pretend and say it wasn't that bad, because it WAS that bad. Hard, terrifying, confusing, and upsetting. But, it was real, and it made us into something else. It's too early to say wether or not it is a better something; I don't really buy the whole "stronger" thing, since I feel, if anything, weaker and more sensitive. Prime bear (or maybe lion) chow? You betcha!  

Focusing on Leo, however, his damage control is very different from ours. He sees everything in simpler terms: happy and unhappy. Things either are nice, or not nice, and his basis for what goes into which category is based on the degree of association he might make with his past hurts. 
I often forget, watching him bump around the house in a completely normal toddler fashion, that for the first year of his life he couldn't even lift his head. I forget, watching him build puzzles and match colors, that he may suffer from major headaches because of the actual "nuts and bolts" in his skull.
Although Leo doesn't let me forget too often, I do, in the moment of the crisis, forget the essential reasons of the "why" Leo is acting out.


I want everything to be perfect and normal, and yet I forget how much in our life is not "normal." Then on the flip side, I also remember how the crazy, weird and abnormal, somehow, was also perfect. It isn't about being stronger either, when bad things happen, it is about being more open, and even more sensitive. My heart is softer and more fragile, but I think that is a good thing, not bad. It's not about fighting or standing firm in adversity, it is about becoming like the "wax melted before a fire:" accepting travesty and finding the lightness in the darkest of dark.


As important as it is to remember and recognize the tribulations for what they were, it is as equally important to build a list of "greats." A list of wonderful and joyous things and moments which take the softened wax of our hearts, and shape it into something truly glorious. And therein lies the secret of suffering. 
Leo's happy list looks something like this:
1. Never getting that Pandora's twenty week ultrasound.
2. Being born here, in the US of A, and especially here next door to DHMC and the most wonderful line-up of compassionate and incredibly talented docs who have saved his life, over and over. Even though things often look grim and it's real easy to blame "Them," I also know I have lots to be thankful to "Them" for.
3. Shunts. Shunts. Shunts. Go shunts!
4. Having a shunt.
5. Getting seizures which led to an MRI, which changed his diagnosis from terminal to "anything goes." From no brain, to: "yup he's got one!"
6. Getting big-bad surgery which changed his life and became a symbol for a rebirth of sorts for Leo. It gave him the chance to develop.
7. Hitting milestones! Sitting up! Crawling! Walking! Talking! Singing!
 (A lot of the credit for above goes to his team of therapists.)
9. Bedtime. Happiness for everyone all around. Leo loves getting his shut-eye time.
10. Blue-glowy Seahorse. And big sister monkey games.
11. Blowing bubbles on the porch in the sunshine.
12. Dog hair pulling. Velvety horsie noses. Cat snuggles. 
13. Music! Drums! 
14. Bath time.
15. Making pizza. Eating Pizza. Making more pizza. Eating even more pizza!
16. Walkies in the woods. 
17. Cars and trains. Trucks and tractors, and especially TRAINS.
18. Kisses. Amens, and church bells. 
And the list goes on and on. I could sit here all day typing it out and still miss stuff. And I am done missing stuff, ya get me? Even the bad stuff. 

It all stays, and it's up to us to make it for better and richer, instead of sadder and crazier!
Although sometimes crazy is good too.




Love from Leo.









Comments

  1. I don't know exactly what type of meltdowns you're encountering lately, but maybe that's the prime example of Leo getting OUT of that crazy hard first stage of his life. There's no general anesthesia now...just a little boy having to deal with little boy stuff. I remember your post a few weeks back that mentioned "Oh, how cute, he's hitting his sister..." It's so easy to see him as a fragile creature, I would expect, and to hold him to a lower behavior standard than a kid who's had it easier in life. I've found myself doing this with my own kids whenever we have a rough period, but my modifications usually have to be made up for in the long run. For a kid with special needs, I think we have to be very careful to consider which ones are the modifications we FEEL he needs, and which ones are the modifications which are actually necessary. Could it be that he's just hitting one of those semi-normal stages of meltdown development that is SOOO hard on parents?

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    Replies
    1. *Wording correction, sorry: For a kid with special needs, there may be a difference between the modifications that are based on the caregiver's feelings about his/her little one and the modifications and which are actually necessary. (Didn't mean to imply that I'm there in the midst with Leo, though your blog really does make me wish I could meet him!)

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    2. Hey Elaine, nice to hear from you and thanks for the comment, I love it! I want to know what everyone thinks, please do comment if you can. Yup I think you are right, it's why I'm so incredibly grateful to his therapists who are the outside witnesses and can make better judgments not based on emotion. They look at Leo's list of bads and say ahh now we know which areas he will need more work, and what will be harder for him. W have always tried to treat Leo like a normal kid, even in the beginning, and I believe that is one of the main reasons why he is so normal in many ways.

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  2. Your perspective is so encouraging. I mean, you guys have really been through some tough stuff, more than most people, and you are able to see the good through the bad. Your Leo is just a treasure. I have fallen in love with him through the computer screen. Those big eyes are going to make girls swoon some day :) I can't wait to see what God has ahead for Leo and for your family!

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    Replies
    1. Haha thank you! Yup his baby blues are something, now that the over exaggerated brow ridge has fallen back a bit, his eyes are more open and less squinty. Although I do miss his look a little before the surgery, his eyes were so open and huge! :)

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  3. I visit here every day.....to reassure myself that the miracle continues.....love and hugs, Claire

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