Hitting Close to Home

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...


http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html






(shameless plug, you can check my pinterest boards by clicking right here )

Thankful Thursday: It goes on

Today I am thankful that life goes on...

As the poet Robert Frost said: "In three words I can sum up everything I've learned about life...it goes on"

Wordless Wednesday: A Holiday Laugh

TtTT: Holiday Spirit

Time for the weekly Tell the Truth Tuesday post...

My holiday spirit is pretty much non existent this season and I think I know why. Yesterday it was almost 70 degrees. SEVENTY! on December 3rd! In the Midwest! ARGH! Seventy degrees is far too warm to be putting up a Christmas tree or baking gingerbread, heck it's even too warm to watch Christmas movies which is one of my favorite things to do in December. Honestly I haven't even listened to a ton of Christmas music yet, which is something I gleefully do on the day after Thanksgiving every year JUST because I can.

This weather really needs to get its' act together. I'm not saying I need subzero temps or a blizzard, but 30 degrees and an inch of snow should would help...at least it wouldn't seem silly to drink hot chocolate if there was a chill in the air, right?!

I'm confused

This weekend was the annual Illinois Spina Bifida Association's Holiday party; we have been invited in years past but have never gone, mostly because of my own insecurities. You see, while Gabe has spina bifida and definitely has limitations because of it, he's very VERY high functioning. We'd only been to one or two functions in the last eight years and there's been a lot of just being uncomfortable; having the kid who can walk/run/jump/use the bathroom on their own makes us outcasts in our own "community", even if it's NOT intentional. I get it, though, I do. I used to be very jealous of those who had kids without ANY disability at all; I think it's human nature to want what you don't have or at the very least HOPE you could have what others have...even if as we all know, things aren't always what they seem for others.

So yesterday we went to the holiday party and it was a pleasant surprise; there were quite a few children (and adults!) with spina bifida who were walking...heck there were even some kids with spina bifida RUNNING and I felt ashamed that I'd kept Gabe away from HIS community of people for so long. In the last few months he's been especially curious about other kids "like him" and this was the perfect opportunity for him to get to see some of them and interact...except that once we got there, he wasn't interested in interacting; he just wanted to see Santa and play on Unc's iPhone 5 (haha)

At one point after we'd been there a while he asked if I'd take him to the bathroom. We walked through a crowd of people, nearly got ran over by the cutest little girl in a wheelchair and did some people watching. Gabe is a very old soul for those who don't know. He's always analyzing and thinking about things and his perspectives on things are very mature for an 8 year old. I look at him and just know that he's so much wiser than I'll ever be or could ever be. As we left the bathroom, he said "mom, I'm confused" I asked by what and he said "I don't know, I just feel confused. There are people here like me, some who have the tubes in their heads [shunt] and some in wheelchairs and some with braces and some with canes and wow, I just don't know, I'm confused" and I'm not going to lie, my heart broke for him. For some reason I think he felt like he'd feel some sort of connection with some of these people; I think he thought it was going to be an instant "oh my gosh YES! these are my people" type thing and when it didn't happen...well, it was confusing. It's hard, as an adult, to not fit into a certain situation or group that you think you will and as adults we deal with the disappointment and realize that it's a part of life and we find our own group to fit into...but children don't have that experience yet and I could see in his little face that he was disappointed and a bit sad.

Overall the experience was a positive one; Ms. Wheelchair Illinois gave an amazing inspirational speech to parents about continuing to be an advocate for your children; to make sure you're never giving up on them and doing right by them and striving to make sure their lives are the best they can be...she was gorgeous AND smart (a teacher actually!!) Santa gave the kiddos nice gifts even if they refused to go near him (ha ha) and the food and company was nice...but we probably won't go again. It just wasn't for us; more importantly, it wasn't for GABE and we both knew it. I suppose at some point I am just going to have to let go and let him forge his own way, aren't I?

Happy Anniversary!!!

We'd like to wish the Greats a very happy 61st wedding anniversary today...sixty one years-how amazing is that!??!? Here's to many more happy years together...and thank you for inspiring ALL of us with your love and dedication to one another and to marriage.