Everywhere I look these days I see the catchy headlines which go something like this: "The top 5 (or 8 or 10) Things You Need to Know About ___(insert topic here). And I get all excited thinking, oh boy, now I'm really going to learn something useful, but after clicking on these articles and reading them, I'm left with not a whole lot more than what I started with. The articles seem so promising! The top ten things you need to know to have a great marriage! The top five things about epilepsy! The top eight things you need to know about Ukraine! The list goes on, and yes, perhaps there are things that I "need to know," but for whatever reasons at the end of my perusal, I still know pretty much the same stuff. It's exciting to think that in the few brief minutes spent on these articles, I will come out educated and enlightened and it's just another dash of reality when instead I'm left feeling unfulfilled. So with that said, I present to you my own version of the top ten things YOU NEED TO KNOW about Leo, and if after you feel let down, I apologize in advance but will refuse to take responsibility, because I did warn you after all.
1. Leo is a living testament to the mystery of life.. He was born with a terminal condition called hydranencephaly, when brain tissue is replaced by fluid until there is only a brain stem left. For almost a year he was on hospice care, had a DNR, and wasn't expected to live past six months. Then, by the miracle of prayer and hope, his diagnosis dramatically was changed. In a crazy rare and unusual circumstance the doctors had to retract their original terminal diagnosis. Where there was no brain tissue, now there was. And there is a lot of it. He has most of his brain, except for a thin strip of tissue called the corpus collosum. And as you all know, he certainly doesn't let that slow him down at all.
2. But Leo has medical issues. Lots of them. Specifically he has a tube inserted deep into his brain where his fluid producing ventricles are which then attaches to a regulator valve that sends the fluid down through another tube into his abdominal cavity. This is called a VP Shunt. For some reason his brain abnormalities prevent him from draining the fluid naturally from his brain. The condition is called Hydrocephalus. He also has epilepsy, probably originating from the same source as the hydro. He gets a couple seizures a month, though the actual frequency varies. However, we are so lucky that they can be mostly controlled and kept at bay with medicine.
3. In his three short years Leo has had seven surgeries. Seven! Two of which were major skull reconstructions. The other ones except for his eye alignment surgery were related to his shunt.
4. Leo gets Physical Therapy, Speech Therapy, Occupational Therapy, Play Therapy. In addition to his immediate family teaching and helping him develop he has a team of four therapists who each come to our home weekly to work with him.
5. Leo is a completely normal spoiled rotten toddler. Terrible twos and threes look just the same in him as in any other kid. If his breakfast takes a minute longer than normal to cook, it's the end of the world. If big sister takes away his new toy, it's the end of the world. If he's having a rocking good time and it's suddenly time to go...yup, its the end of the world. If mom can't pick him up right this gosh darn freaking second, it's not just the end of the world for him, but also for everyone in a mile radius of our house.
6. Leo doesn't let his history dictate his future. Even though he came in to this life with many limits that have labeled him for the rest of his life, it doesn't affect him in the way we think it would. So he spent the first year of his life flat on his back because of his humongous and misshapen head. So what? He learned to pick things up with his feet and perfected his mind control over everyone around to do his own bidding. So after three and half years he is still pretty shaky on his pins, but he will never ever take locomotion for granted. So he can't string many words together yet like most of his peers, but if you can't tell what he's saying or thinking, then you might want to get your ears checked. So even though he's been through hell, there is absolutely no assumption from us that his present or future will be like his past. Lion boy just doesn't work that way.
7. Leo became a lionhearted boy before we knew anything was wrong. We picked his name in the first trimester, and if ya'll remember we only found out his diagnosis a week before he dramatically fell into our laps. Maybe there is more to that pre-destination theories then we think. Was I destined to be his mom? I would say yes; even though I can't explain it, since it's just in the realm of feelings and dreams, not science.
8. Leo is a lover of life. His smile is infectious and easily given as are his hugs and kisses. Even if he just met you, you become a friend for life, or at least for the next ten minutes. He loves and enjoys so many things that it would take me ages to list them all. He spends so much of his time enjoying life that there is almost no time to sleep. I mean he does enjoy sleeping, but only for so long, then he is ready to move on to something new, wether the rest of us are ready or not; usually not.
9. The lion boy is a celebrity. Since his first day on earth, this blog has been faithfully kept up by yours truly, and somehow it sure has gotten around in the past three years. My page stats show visitors from all parts of the world, and with an average of a thousand views a month and an all time number of 137,103, I'm pretty much stumped by how many of you know and have shared in his story.
10. I wouldn't change him. You hear many parents advocating for their special children in such ways, but you don't really get it, until it is your own child who is limited, but yet defined and formed into who he is by his limitations. Do I wish he didn't have to suffer? Yes! Absolutely! I hate and despise seizures and surgeries! But do I wish for some new son? Hells no. Because I love him, and he has been made by his past experiences, as have I. I love that he has a blog and that people can be touched by his story. I love that I am forced to toughen up and leave my comfort zone almost daily. (Though I don't love it in the moment of course, only after!) Just to clear it up here so there is no mistake, I wish for many things to be different, easier, better; I am normal human after all, but I don't wish for him to be different-easier-better, because he is all that and more. I'm grateful for all the crap that has come down the stream our way, because it has made me pick my head out of the water. Sure, at the next big Leo crisis I will come all unglued and sunk etc, but now that's almost normal and I don't dwell on it..too much anyways!
So what this list exercise has proved to me is that you can't really summarize everything that you think someone "needs to know" in five or ten points, because people and our inherent conditions/circumstances/experiences etc, can't be quantified. There is no moment of enlightenment, nothing can be gained from trying to squeeze the enormity and mysteriousness of life into a one page cliff note. If it were that easy, why would scholars have dedicated their whole lives in pursuit of one thought or idea? The internet hasn't changed things so much that we can download into our brains the knowledge of lifetimes. Yeah we can google, we can summarize, we can skim the surface of things, but to really know something or someone inside out, we need to stop looking at our own "selfies" on social media, and sit down with a friend in real time, but most importantly, look into the faces of our children and become scholars who dedicate the rest of their lives into the pursuit of understanding and acceptance of their hearts and souls. Can I tell you what Leo really is in ten points? No way. But probably this blog could, if you sat and read the whole thing from start to present. So what is the point of the list? Is there any value in it at all? Yes, I think so. I guess I see it as an invitation to learn more, instead of a finished product. It's a beckoning hand, an opening of a gate, a tempting smell; a glimpse of a rainbow that should bring out our curiosity and our attraction to dig a little deeper, go a little farther in understanding the mystery of this wonderful life.
1. Leo is a living testament to the mystery of life.. He was born with a terminal condition called hydranencephaly, when brain tissue is replaced by fluid until there is only a brain stem left. For almost a year he was on hospice care, had a DNR, and wasn't expected to live past six months. Then, by the miracle of prayer and hope, his diagnosis dramatically was changed. In a crazy rare and unusual circumstance the doctors had to retract their original terminal diagnosis. Where there was no brain tissue, now there was. And there is a lot of it. He has most of his brain, except for a thin strip of tissue called the corpus collosum. And as you all know, he certainly doesn't let that slow him down at all.
2. But Leo has medical issues. Lots of them. Specifically he has a tube inserted deep into his brain where his fluid producing ventricles are which then attaches to a regulator valve that sends the fluid down through another tube into his abdominal cavity. This is called a VP Shunt. For some reason his brain abnormalities prevent him from draining the fluid naturally from his brain. The condition is called Hydrocephalus. He also has epilepsy, probably originating from the same source as the hydro. He gets a couple seizures a month, though the actual frequency varies. However, we are so lucky that they can be mostly controlled and kept at bay with medicine.
3. In his three short years Leo has had seven surgeries. Seven! Two of which were major skull reconstructions. The other ones except for his eye alignment surgery were related to his shunt.
4. Leo gets Physical Therapy, Speech Therapy, Occupational Therapy, Play Therapy. In addition to his immediate family teaching and helping him develop he has a team of four therapists who each come to our home weekly to work with him.
5. Leo is a completely normal spoiled rotten toddler. Terrible twos and threes look just the same in him as in any other kid. If his breakfast takes a minute longer than normal to cook, it's the end of the world. If big sister takes away his new toy, it's the end of the world. If he's having a rocking good time and it's suddenly time to go...yup, its the end of the world. If mom can't pick him up right this gosh darn freaking second, it's not just the end of the world for him, but also for everyone in a mile radius of our house.
6. Leo doesn't let his history dictate his future. Even though he came in to this life with many limits that have labeled him for the rest of his life, it doesn't affect him in the way we think it would. So he spent the first year of his life flat on his back because of his humongous and misshapen head. So what? He learned to pick things up with his feet and perfected his mind control over everyone around to do his own bidding. So after three and half years he is still pretty shaky on his pins, but he will never ever take locomotion for granted. So he can't string many words together yet like most of his peers, but if you can't tell what he's saying or thinking, then you might want to get your ears checked. So even though he's been through hell, there is absolutely no assumption from us that his present or future will be like his past. Lion boy just doesn't work that way.
7. Leo became a lionhearted boy before we knew anything was wrong. We picked his name in the first trimester, and if ya'll remember we only found out his diagnosis a week before he dramatically fell into our laps. Maybe there is more to that pre-destination theories then we think. Was I destined to be his mom? I would say yes; even though I can't explain it, since it's just in the realm of feelings and dreams, not science.
8. Leo is a lover of life. His smile is infectious and easily given as are his hugs and kisses. Even if he just met you, you become a friend for life, or at least for the next ten minutes. He loves and enjoys so many things that it would take me ages to list them all. He spends so much of his time enjoying life that there is almost no time to sleep. I mean he does enjoy sleeping, but only for so long, then he is ready to move on to something new, wether the rest of us are ready or not; usually not.
9. The lion boy is a celebrity. Since his first day on earth, this blog has been faithfully kept up by yours truly, and somehow it sure has gotten around in the past three years. My page stats show visitors from all parts of the world, and with an average of a thousand views a month and an all time number of 137,103, I'm pretty much stumped by how many of you know and have shared in his story.
10. I wouldn't change him. You hear many parents advocating for their special children in such ways, but you don't really get it, until it is your own child who is limited, but yet defined and formed into who he is by his limitations. Do I wish he didn't have to suffer? Yes! Absolutely! I hate and despise seizures and surgeries! But do I wish for some new son? Hells no. Because I love him, and he has been made by his past experiences, as have I. I love that he has a blog and that people can be touched by his story. I love that I am forced to toughen up and leave my comfort zone almost daily. (Though I don't love it in the moment of course, only after!) Just to clear it up here so there is no mistake, I wish for many things to be different, easier, better; I am normal human after all, but I don't wish for him to be different-easier-better, because he is all that and more. I'm grateful for all the crap that has come down the stream our way, because it has made me pick my head out of the water. Sure, at the next big Leo crisis I will come all unglued and sunk etc, but now that's almost normal and I don't dwell on it..too much anyways!
So what this list exercise has proved to me is that you can't really summarize everything that you think someone "needs to know" in five or ten points, because people and our inherent conditions/circumstances/experiences etc, can't be quantified. There is no moment of enlightenment, nothing can be gained from trying to squeeze the enormity and mysteriousness of life into a one page cliff note. If it were that easy, why would scholars have dedicated their whole lives in pursuit of one thought or idea? The internet hasn't changed things so much that we can download into our brains the knowledge of lifetimes. Yeah we can google, we can summarize, we can skim the surface of things, but to really know something or someone inside out, we need to stop looking at our own "selfies" on social media, and sit down with a friend in real time, but most importantly, look into the faces of our children and become scholars who dedicate the rest of their lives into the pursuit of understanding and acceptance of their hearts and souls. Can I tell you what Leo really is in ten points? No way. But probably this blog could, if you sat and read the whole thing from start to present. So what is the point of the list? Is there any value in it at all? Yes, I think so. I guess I see it as an invitation to learn more, instead of a finished product. It's a beckoning hand, an opening of a gate, a tempting smell; a glimpse of a rainbow that should bring out our curiosity and our attraction to dig a little deeper, go a little farther in understanding the mystery of this wonderful life.
Beautiful list!!
ReplyDeleteLovely :)
ReplyDeleteAna, have you ever thought of publishing your blog as a book? Throughout your growth with Leo, your spiritual insights have granted me many opportunities to reevaluate my perspective on challenges I have in my own life. The blog has been wonderful, but given the volume of high quality writing you've produced now, you may find that an Orthodox book publisher is interested in your story. I don't think there are any Orthodox books written on the topic of finding your way spiritually and practically with a child with disabilities...? I would buy it! -Elaine
ReplyDelete