Skip to main content

Heart's Fact

Just to let all of Leo's faithful followers know...

We canceled his surgery that was supposed to happen tomorrow. He is still getting over this past cold and seizure induced hospital stay, as are we, so we decided to play it safe and postpone the surgery until a better day. Once I read about the flare from the sun causing technological difficulties, I felt even better in my decision. I want technology to be in tip-top shape when my son's life will rely on it!  It was just too much for us right now. Also he has a profusion of other appointments this week that would have to be reshuffled, and honestly, I'm not up to that kind of thing right now.

Tomorrow, bright and early, he has an appointment with the neuro-development clinic that I have already postponed several times. I'm glad that this time I will actually get to take Leo there and see what it is all about it. We took him there a long time ago, when he was 4 months old or something, and still branded with that lethal diagnosis of hydranencephaly. I remember how the doctor kept exclaiming about how wiggly and active Leo was. If my memory serves me right, Leo was hungry and cranky at the time and letting me know it. He had also just had his first seizure a day before, of course at the time, I didn't even know it. Anyway, I remember the doctors attitude, how she kept looking for the tell tale characteristics of a unresponsive baby who "would not feel pain," or " be able to recognize his mother." Although I must add here, that though hydranencephaly is described by such sentences in the medical texts, those special and unearthly children have, in their own unique ways, very clear understanding and perception and are most certainly not "vegetables!" I'm so grateful for those groups of parents who I have been lucky enough to know who have such children. For us, it means one thing, for the medical professionals, it means a very different thing, and I clearly remember that doctor trying to place Leo under those labels. On the one hand, a label makes things easier. This something can be defined, researched, studied, and judged. On the other hand, once labeled, it is almost impossible to break those perceptions. And at the time of the crisis, in the midst of the swirling chaos of emotion, it maybe very confusing for parents to know what is right or wrong. Who, or what to believe in regards to their child. We were told one thing about Leo, but in our hearts, we felt something very different. And I remember that feeling very clearly during that appointment, and basically the first half year of Leo's life. That I was fighting against the data, that the feelings that I had in my heart were in competition for common sense. All the facts pointed to Leo living a very short, and medically dependent life, oblivious to everything around him. So part of me had to accept those facts, but the other part of me, the part that told me he was a miracle of life; my mom sense, told me those facts were false. It's a baffling and uneasy place to be.
So why would I be looking forward to this appointment? Well, it's simple really. I am so proud of my Leo that I want to shout it from the rooftops. To share his picture with the whole world, to show that hard scientific fact can't explain the miracle of love. To finally have that battle between the two opposing sides in myself officially declared over. To prove that life is mysterious and unfathomable, and that, when in doubt, always, always, listen to your heart.

On Thursday he meets his new speech and oral skills therapist, who will, hopefully, help little man not be quite so little! Although I'm reserving judgment because our first baby was/is always on the bottom of the chart, but not suffering for it in any way!

As to, again, a new date for the surgery... three is the lucky charm right? The secretary who I talked with very briefly the other day, said that next available date for surgery would be in March. Oh well. It's always better not to be "too hasty" right? Not with something like this. It needs to be done, but not rushed.

Here is Leo with his faithful dog guardian. Although that is probably a story for another post.






Comments

  1. God bless you all...the prayers keep coming. I treasure the idea of the astonishment of the doctors as they get another look at your live miracle. Claire

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…