Have you ever wondered why we humans always need to know the reasons for things? The whys and the hows of everything around us is essential for our brains to function. The moment anything out of the ordinary happens, what is the first thing that we do? We come up with an explanation. Once we have done that, then we feel relieved. Whew! Now that we know, or think that we know, we can continue on with life. Take for example, the things that moms and dads were told thirty years ago about their children with spina bifida. Doctors faced with shattered parents demanding answers probably pulled out the first thing that entered their collective heads. "Well, it was probably a bad potato." Umm, really? A freaking potato caused my baby's spine malformation? Unfortunately not everyone is blessed with such a skeptical mind as mine, and many mothers blamed their potato gratins for all their child's woes. This was thirty plus years ago and since then the medical community has ruled out bad potatoes as a cause for neural tube defects. That's probably a small consolation to those mothers who had to live every day kicking themselves for eating a dang potato. Another lovely term that they used to explain away autistic children was that the child was suffering from "refrigerator mom syndrome." I'm sorry, but that isn't even in Latin. How can it be possible that they would say this to parents?! Your child is acting like a feral creature because you haven't given him enough love. Try giving 20 second hugs a couple times a day and come back in a month. And you can just imagine how people were able to relax, finally knowing the reasons for the problems in their life.
When Leo was diagnosed, still in utero, I was told that his malformation is caused by drugs and alcohol. Ok, just because I fit into the age bracket, doesn't necessarily mean that I smoke like a train and drink like an elephant every chance I get. So go ahead and cross that explanation out. We don't even own a microwave and haven't in years. I remember, this time last year, feeling particularly desperate for an explanation, and a reassurance that this all wasn't somehow my fault. But unlike those other parents who had to accept the most ludicrous explanation, we were unable to get any at all. All we know is that his CSF drains were/are blocked, which might or might not have happened because of a mini stroke in utero at some point during my second trimester. What could have caused the stroke? That is a mystery. For the longest time, this was the hardest for us to deal with. The hows and the whys were driving us crazy. And then, at some point, it stopped being such a big deal. Leo has managed to convince us that all that junk, all that stress and self deprecation doesn't matter. That it's easier to accept what happened, without trying to rationalize and explain every aspect away. We will probably never know what exactly happened to little man's noggin when he was swimming in the still darkness, but the one thing that we do know, is that every step of his life was guarded and watched over very carefully by our Lord and probably a horde; a positive army of Guardian Angels. And the same goes for any and every little baby out there that is born with challenges. Why do these things happen? Why wouldn't they happen? How else can we really and truly understand the depths of our faith? Plus there is no way I would trade my lion man for some other baby, even one who was typically perfect. But no one is perfect, and everyone has their own cross to bear. Leo just happened to get a pretty heavy one right off the bat, but that just means he'll be extra strong. Strong enough to be happy without searching for reasons, or looking for earthly reassurances where none can be found. Sometimes there is nothing that anybody can say that will make things right. Only time, tears, and love can help us get over that human quest for the "why."
Leo had a eye appointment last week where it was determined that he has something called bilateral six nerve palsy. Which translates to: he has trouble moving his eyes to look to the outside sometimes. This is caused by trauma to his head, probably during the surgery. At this point it isn't severe enough for them to do anything about it, but if it gets worse it might mean loss of vision without direct intervention. Anyway he is being monitored for that every couple months, and hopefully it will resolve itself in time.
He is still on track for getting a helmet, but because of all the insurance red tape it's taking forever. we've been hounding all the people involved and it should finally get off the ground this week. The longer we wait, the less chance of it doing any good.
Leo is sitting unsupported for short periods of time and is making amazing strides towards crawling! He is pretty patient and determined and no one dares to say "he won't" or "can't" anymore. It's more like "what is he doing NOW?" His PT did bring him a stander to use a couple times a day for bone development, but at the rate he's going, he won't need it for long.
By the way, I wanted to give credit where it's due...The above stories were told to me by Leo's visiting nurse who has had personal experience with those things, and knows so many wacky stories about mankind that you would not believe. June, you are awesome.
When Leo was diagnosed, still in utero, I was told that his malformation is caused by drugs and alcohol. Ok, just because I fit into the age bracket, doesn't necessarily mean that I smoke like a train and drink like an elephant every chance I get. So go ahead and cross that explanation out. We don't even own a microwave and haven't in years. I remember, this time last year, feeling particularly desperate for an explanation, and a reassurance that this all wasn't somehow my fault. But unlike those other parents who had to accept the most ludicrous explanation, we were unable to get any at all. All we know is that his CSF drains were/are blocked, which might or might not have happened because of a mini stroke in utero at some point during my second trimester. What could have caused the stroke? That is a mystery. For the longest time, this was the hardest for us to deal with. The hows and the whys were driving us crazy. And then, at some point, it stopped being such a big deal. Leo has managed to convince us that all that junk, all that stress and self deprecation doesn't matter. That it's easier to accept what happened, without trying to rationalize and explain every aspect away. We will probably never know what exactly happened to little man's noggin when he was swimming in the still darkness, but the one thing that we do know, is that every step of his life was guarded and watched over very carefully by our Lord and probably a horde; a positive army of Guardian Angels. And the same goes for any and every little baby out there that is born with challenges. Why do these things happen? Why wouldn't they happen? How else can we really and truly understand the depths of our faith? Plus there is no way I would trade my lion man for some other baby, even one who was typically perfect. But no one is perfect, and everyone has their own cross to bear. Leo just happened to get a pretty heavy one right off the bat, but that just means he'll be extra strong. Strong enough to be happy without searching for reasons, or looking for earthly reassurances where none can be found. Sometimes there is nothing that anybody can say that will make things right. Only time, tears, and love can help us get over that human quest for the "why."
Leo had a eye appointment last week where it was determined that he has something called bilateral six nerve palsy. Which translates to: he has trouble moving his eyes to look to the outside sometimes. This is caused by trauma to his head, probably during the surgery. At this point it isn't severe enough for them to do anything about it, but if it gets worse it might mean loss of vision without direct intervention. Anyway he is being monitored for that every couple months, and hopefully it will resolve itself in time.
He is still on track for getting a helmet, but because of all the insurance red tape it's taking forever. we've been hounding all the people involved and it should finally get off the ground this week. The longer we wait, the less chance of it doing any good.
Leo is sitting unsupported for short periods of time and is making amazing strides towards crawling! He is pretty patient and determined and no one dares to say "he won't" or "can't" anymore. It's more like "what is he doing NOW?" His PT did bring him a stander to use a couple times a day for bone development, but at the rate he's going, he won't need it for long.
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| Not a big fan of the "baby rack." |
Check. Him. Out. He's amazing! The world is full of unanswered why's. So glad to hear you are not plagued by that, and you can love that boy with all your heart; nothing getting in the way of your joy. :)
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