Our life with an extra chromosome....

April 8, 2010

Noticing

My little has been sick now for 2.5 weeks!  We are on round 3 of antibiotics!  

Somewhere in the midst of him being sick, anxiety creeps in, and starts to whisper to my soul, and to my mind, that Griffin is going to die.  

 Sick, I know.  

I don't even realize, that it is happening, until all of a sudden I am having a melt down because my baby, has ear infections, a soar throat, and it is affecting his appetite, and makes him nauseous.  Those are not fun things, but certainly no need to think I am losing him, right....?  

I think deep down I just don't believe that everything is really OK.  

Before my child, I was so removed from death, I didn't really understand any of the emotions people felt when losing a loved one, because I have never known any one to die, except for my great grandmothers when I was young.  

Well the apparent fragility of Griffin's life, all that it has taken us through, surgeries with "risks",  tests for "risks", being brought into an entire community where so many children's lives are just so fragile, has brought the idea and complex emotions of death a little bit close to home.  

The other day when driving, I realized that though Griffin's life appears to be more fragile than others, it is in fact not.  All of life is fragile, and in that miraculous, that it all keeps going.  That God is in control of it all, suspends it all, and controls when we go, and when we stay.  I believe any way. 

 So in a way Griffin just doesn't have the curtain that is in front of most other people's face that leads them to believe that they are the ones in control of their life.  And at first the removal of this curtain can make you crazy, as you fight so desperately to remain in control, but as you learn that you never were in control in the first place, slowly freedom and peace can crawl in and make a home in your heart, built from trust.  Trust in the creator of all things, trust that there is a creator of all things.  

And here is another ruthless confession.....I realized a few months ago, that I have hesitated to fall madly, deeply, desperately, totally, in love with my little boy, because of the fear that one day I might lose him, and knowing how hard it would be to carry on, if I had allowed the deepest parts of my soul and heart to grow little strings and get intertwined with his little heart strings, to the point that they were one, knowing that a break in those ties would be crushing.  I was trying to protect myself.  Fear of being hurt or more rightly devastated, fear of not knowing how to handle something like that, held me back.  Another feeble attempt to control my life.  

But then the second epiphany came, that the regret and the guilt of holding back would be more crushing than the actual cut of heart strings.  So I have been diving deep with my heart, not holding it back, and letting it soar, even though it is scared as hell.  

I love my little boy, every thing about him, everything about how that extra chromosome affects him,  with out that chromosome, he would not be him.  And I will take an infinite amount of sick, rough days with him, over any days with out him.  

So bring it life, show me what you got, I'm not going to be scared and I'm not going to fight you anymore, I am here to embrace you.  This God thing, can show me that my heart is a lot bigger and stronger than I thought at first.  

While he was sick, and I was scared but not running, I noticed some things, somethings about him that took me deeper in love....

1. When he was horribly sick and not eating, and I had put him in his high chair to yet again try to persuade him to eat a little, I turned on some music on the lap top that was above and behind his head, and watching him twist, and try so hard to turn his body around in a chair that he strapped into, made me fall in love with him, this persistent little boy, who just wants to see the screen of where the music is coming from, whose head was tilted up and backward for half of it.  

2.  His love of the vacuum cleaner makes vacuuming a spiritual experience, to watch my child, this creation, just love something so much, he climbs on it, he chases it, he tries to vacuum, he looks into the light on the front with his eyes as close as can be to it, it looks like he is trying to peer through the head light, like it is a peep hole that will show him what the heck is inside this thing!  

3.  When I am rocking him night, reading a beloved story of his, and it gets to one of his favorite parts, where I "cock a doodle doooooo" in my best rooster voice, and he whips his little head and body around so fast and in a way that I can't believe his body can turn, just to see my silly face make my rooster noise, and then he smirks, like good job momma.  

4.  How when he is fighting his sleep, and I know he is exhausted, and he knows he is exhausted, and we try all the usual stuff and he just can't get comfy, so I lay him in his crib and hand him his  "go nighty night blankie" (that I carry around more than he does, because I am trying to get him attached to it)  and he KNOWS what I am trying to do with that blankie, with all of the times that I make it tag along with us, he KNOWS that I am trying to get him to need that to go to sleep instead of me, so when I lay him down in his crib and hand him his blankie, and this is what he does.....I just fall more in love with him.......he looks at it, looks at me, and either A: pushes it away from himself, B:  throws it out of his crib, or C:  throws it so the side and all of these are immediately followed by him then looking back at me with outstretched arms.  

5.  I love when I dance with him to music around our house, how when I raise his arm over my head, how he smirks at me with pure delight.  

6.  I love how he climbs all over me, no matter how I am sitting.  If I am on my tummy there is Griffin, sitting on my back , my bottom, or my legs.  If I am sitting indian style he is either crawling up my back or has crawled into my lap, or in trying to crawl into my arms.  If I am laying on my back, he is sitting on my tummy.  He does this al on his own, I do not place him any where on me.  

I have been inspired to live and love deeply.  Set your fear down and go for it, my going for it, looks a lot like closing my eyes tightly, while I stumble, 2 steps forward, 3 steps back, but I do crack my eyes open every now and again and when I do, I sometimes wonder why I am so scared in the first place.  

Sorry if this post is more than you cared to know about me, but the people who love me, know all of this about me already (because I have talked it through with them)  and to come here and post something that wasn't really on my heart, felt fake, and I am tired of holding that one up, so to post tonight, I had to be 100% myself.  I hope you like.  Because I do.  



Much love and peace to you tonight my dear friends and family.  

1 comment:

Janine said...

I commend you on your honesty and thankyou for sharing such a personal and private part of yourself.

My son was 11 weeks premmie and although I connected with him immediately I know my father held back his love for the same reasons as you, he was scared of Jordan not making it and dealing with the pain of saying goodbye to his new grandson. He also came to the same conclusions as you and they have a wonderful loving relationship just as Grandfather and Grandson should.

I am so glad you found my blog and I look forward to reading through the rest of yours. Janine