Most days I don't think about Gabe's disabilities; mostly I just think of him as Gabe. Gabe who is funny and caring and thoughtful; Gabe who screams when he's angry, cries over injustices whether real or perceived, Gabe who often needs a shower because eight year old boys are filthy and often need more soap and hot water than they think they do. Gabe is Gabe, I don't think about that disabled nonsense, ain't nobody got time for that (haha)
The last couple of days have been a bit rough on the disability front; Gabe is really struggling with math still and he's frustrated over his lack of physical strength and speed and I'm frustrated over scrubbing knees of pants and replacing knees in pants because he's falling on them and blah and blah and blah so on so forth, this sort of stuff sucks.
Today while on pinterest, I found an amazing blog post by a woman who was just entering the world of disability and I'm not going to lie, I was sobbing. I was full on sobbing those awful hiccuping gut wrenching ugly sobs that no one really wants to do let alone ADMIT to doing, but I did because it hit so incredibly close to home. She writes " I think I cried for seven hours straight. It was gut-wrenching pain. I
held Nella and I kissed her but I literally writhed in emotional pain on
that bed in the dark with our candles and my friends by my side until
the sun came up. I remember trying to sleep and then feeling it come on
again...and I'd start shaking" and goes on in other parts to talk about the absolute pain she was feeling; all of the sudden she was thrust into this whole new world; this whole complicated and sometimes awful and incredibly isolating and disappointed guilt inducing world of special needs parenting.
All of the sudden, reading those words, memories flooded back to me, things I thought I'd never remember; falling onto Geo outside of the hospital under the weight of my own grief, the silence of my ob as he looked at me teary eyed, the pats of the nurse on my arm as she told me things would work out, and of Geo, sweet sensitive George who was looking forward to being a daddy. The kind of daddy who wanted to play football and teach bowling and jump and run and play and rough house and get down and dirty with his first born, his SON. He's so quiet anyway and in those first days after the diagnosis he didn't say a whole lot or maybe he did but I was so lost in my own thoughts that I didn't hear him. I was so wrapped up in doctors and needles and appointments and grief and sobbing that I just couldn't do it; I literally could not handle another persons' needs at that moment. I remember laying in bed, pleading with every God and goddess I could think of, pleading with the universe to please let this be some sort of horrific dream that I'd wake up from. I remember thinking that this had to be my fault; that my body had failed me again.That this really meant I had no business being a mother.
Of course, those things are not true; I love being a mother, particularly Gabe's mother. He's such a fantastic kid, even on bad days, even on the days when he was in a cast and miserable or in those first uncertain days when he laid in his incubator and looked at me with those big soulful eyes of his. My body hadn't failed me; sometimes these things happen and in the case of Gabe's spina bifida, it WAS one of those unexplainable things; the best advice I got for dealing with it was from my wise OB who told me that I needed to stop beating myself up and stop looking for an answer because sometimes these things happen and no one can control it, but I could control how I took care of the situation.
It's hard to believe that nine years ago (almost to the day) I was a sobbing mess worried about the unknown...because really, the whole damn future is unknown. Here are the things I did know during that time: I loved Gabe, I loved Geo, and I knew our little family would be fine. Here are the things I know NOW: I love Gabe, I love Bitsy, I love Geo and I know our little family is going to be fine. The details are unknown but I just have to remind myself that I am not IN control of everything; that all I can do is be present in my life, make good choices, and have faith that things will work out in the end. My own words don't seem sufficient, so I'll rely on the blogger I quoted above to sum this whole thing up:
Life moves on. And there have been lots of tears since. There will be. But, there is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.
I encourage you to check out the whole blog she posted, though I am warning you-you will need tissues and a quiet place to read this...it's ugly tear inducing but the end is so beautiful and so real; and though I cried because it reminded me so much of those first days with Gabe's diagnosis and Gabe himself, I also smiled at the end because YES, we are lucky and YES we have a beautiful life in store...and here we are all these years later, living it out day after day...
(shameless plug, you can check my pinterest boards by clicking right here )