Skip to main content

Let It

Rain..?

Those of you dear readers in our neck of the world will know that the past couple days the word on the street has been Irene. What a peaceful and gentle name for a howling force of destruction. We haven't borne the brunt of this storm's fury, although our little cabin lies directly in its path as it works its way up north. The worst is yet to come apparently. There is a Russian saying, that loosely translated comes to something like this: "this sorrow isn't a sorrow, the real sorrow is yet to come." It's our little way of reminding ourselves that no matter how good life gets, how stable things may seem, there is always a possibility of a lurking storm; ready to come and shock you out of complacency. We take so much for granted, our health, home, happiness, habits, and anytime those are threatened, we fall into shock. Why are we so surprised? And this isn't pessimism, this is just pure fact.

"Sh*t Happens" folks.

The one and only time I was given advice this past year, the advice was, be prepared. Don't ever let yourself get lulled by the norm. Be ready to be strong. Drink your cup of wine, but be aware of the dregs at the bottom. Because for every sunny day, there is a rainy day. For every smile, there is a tear. For every bubbly healthy baby, there is a sick and suffering one. However, the challenge here, the hard part of all this, is that even while being aware, we must be joyful. Not happy perhaps, but peaceful. Still, and collected; calm and accepting. Otherwise we fall into the trap of bitterness, cynicism and despair. And once you get there, it is very hard to get out. There is nothing that can make us feel more helpless, more weak and insignificant then the powerful magnitude of a hurricane. Nature can cower even the most powerful human. (Superheros aside..) So when we examine our frailty and our weakness, the only thing that we can do is throw our trust to God. And in that action, we become strong. Strong enough to face whatever happens, strong enough to pray. And strong enough to be at peace, whatever the outcome of our trials. Let it rain, let it storm, and let it go.

On another note, we celebrated the kids birthdays with a bang on a gorgeous sunny afternoon, and thank you, thank you, to all who came and for all the great gifts! We are truly spoiled by all of you!
Leo is doing stellar, he is holding his head longer and stronger every day, and is even putting weight through his legs. This is very important because the weight resistance helps his bones grow correctly. Unfortunately his PT is still ordering him a stander since babies his age are getting at least a couple hours of standing time a day, while our dude spends the majority of the day on his back. It's hard for me to come to grips with this, harder then you would think, considering all the stuff we have gone through. I guess he seems so normal to me, that anything that underlines his abnormalities is saddening. In other areas he is like any other 12 month old. He plays peekaboo, claps or kicks when you ask him to, and it's really hard to sneak anything past him because he is so aware of whats going on. The moment he hears me making a bottle, or cracking open a food jar he starts squealing with impatience. Same goes for trying to tiptoe past his crib when he's napping. Impossible! The more he develops socially, the harder it is for me see his physical side lagging behind. Granted he is still post-op and healing, but like any other parent, we are impatient. The swelling on his head waxes and wanes with the weather, but I think it is slowly and imperceptibly going away. At any rate, it doesn't worry me so much as it just annoys me. Go away all ready! In a couple weeks he has another MRI quickbrain to check on things, and hopefully I will get a copy of the images this time. Really the last one was astounding, hopefully this one will be even better.
As always, thanks for reading and loving our little Lion dude.



At the bday party: Leo being held by the first person to hold him when he born, our lovely nurse Denise. We love you!


 Godmother+Leo=happy



 Speaking of superheros...


Proud Papa.

Comments

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...

Putting The Lion Back Into The Wild

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu...

Kinda Like 'Nam.

First off, sorry about the disjointed nature of the posting from yesterday. I was updating via text messegaing from my phone and because the service is patchy in the hospital not only were the posts chopped up but they were frequently out of order. You have to be a sleuth to figure it out. On the other hand, I guess it was a direct reflection of what we were experiencing! Between getting little bits of info and there, we had no clue what was going on. This is what we have been able to piece together since yesterday. The surgery itself was a definite success, though there were a few surprises. One of which being that when they took out Leo's shunt of 8 months they discovered that it was not working. Huh??? He never showed any symptoms of shunt failure and brain compression, so what the heck? In between the sobering list of items now holding risks for our guy, the nuero surgeon dropped this little bombshell on us. Does that ...