Saturday, August 6, 2011

Angels and Demons

Okay...maybe not the title you'd expect for the promised Disneyland post...but it me.
I've been putting off this post.
At first on purpose.
It's a pretty big post.
But even once I sat down to write it - it's taken me (no joke) over a week to finish it.
So I hope it makes even a little bit of sense. lol.
Here goes.
After the conference, a lot of information was swirling around in my head. A lot of worries were playing with my thoughts. A great many emotions were laying on my heart. I wasn't sure how to write about it. David and I talked a lot about how we felt it went, what we had learned, where to go from here, etc. And in my mind...I felt like I had a decent grip on things. But in my heart - I was kind of a mess. So when I started blogging about our trip...the reason for our trip was foremost on my thoughts. The National Spina Bifida Conference. But I didn't pretend to know how to tackle that post. How do I even begin to tell about our trip to the National Spina Bifida Conference at the Disneyland Hotel? Well, it's a little like being at " The Happiest Place on Earth" - and focusing all your thoughts on one of the of the saddest, scariest, most worrisome things in your life. confusing? ironic? lol. Now I don't want to be let me back up. I want to be clear about 2 things.

#1 - I adore my little boy. If you've ever read my blog...if you know me at all...I don't have to tell you that. I love him. I heart him. I "less than 3" him (if you're confused...that makes me giggle. And I'll explain later). However you want to say it...I feel it. His mommy and daddy love him with hearts so full they are overflowing with joy. He is our blessing, our miracle, our light. I can't even talk to God in prayer about him without crying because I am so thankful for him. He's not a burden or a "sensitive subject." He is sunshine and kisses.
He is laughter and silliness and his hugs are the perfect stress-reliever.
Being his mother is not sad, or scary, or worrisome.
But Spina Bifida is.

#2 - I wanted to go to this conference. I prayed and planned and begged and dreamed about going to this conference! I about came out of my skin with excitement when our dream became a reality. And to this day - and forever to come - I am so thankful for the wonderful opportunity it was. It was amazing. It was everything we thought it would be. It was informative and interesting and challenged me to be the mother I want to be for my son. And nothing compares with the joy I feel - the encouragement and strength I get - the love and renewal I receive from being with my SB family. Those mommas (and daddys) are my life-line. God's angels sent to help me in a different way than my amazing friends and family can fulfill. They are the gift of "been there, done that" - "went there, felt that" - Their very presence says "I'm right there with you on this journey - you are not alone."
They are my "Chicken-Soup-for-the-SB Momma-Soul!" ;)
And I got to see them. Hug them. Talk with them. Smile with them. Laugh with them. Take pictures with them. Look-wide-eyed-in-fear-at-what-the-doctors-just-said with them. lol. Experiencing this with them was....just beyond words.
So to everyone who helped us get there - to all those friends and family who gave so generously in the way of money, time, and prayers - we thank you. It was truly a gift - an experience - a memory - an opportunity - that will keep on giving for as long as we live.

But along with the camaraderie and courage - the wealth of information and insights shared - the sense of productivity and purpose - came the overwhelming realization, the heavy acknowledgment, and the undeniable truth - that our son has Spina Bifida.
What? You may think.
Come on now. You knew that. That's not news to you. I don't get it. What do you mean? And I'll answer you.
Yes. Of course we knew that.
It's not a shock to listen to doctors talk about what Spina Bifida means. It's not a surprise to see the pictures and diagrams and charts of what Spina Bifida does or doesn't look like. It's nothing new to hear about the struggles and differences and potential problems Spina Bifida brings.
But you are never fully prepared to completely separate yourself from your "day to day reality" (the everyday happenings of your family life - trips to Target - playing outside - grilled cheese for lunch - reading before bedtime) and for 3 days dive head-first into "Spina Bifida Reality." A place where everything is subjective to the doctor you're talking to at the moment, where answers aren't there - and even the ones they give you don't seem to add up. Where it's all about what your child "can't do" or "won't do" or "may never do." Where you feel like the future of your child is riddled with surgeries and obstacles and therapies and hardships. Where every other sentence contains words like bowel-program, catheter, shunt, Chiari, scoliosis, reflux, tethered cord, sphincter, ventricle, lesion, low tone, high tone, and (a new one for me) "Mic-key button" (unfortunately it has nothing to do with Mickey Mouse.) In this world - you don't have laundry or legos or little boys running around your living room to distract you . You don't stop mid-anxiety attack and look at your munchkin playing happily on the floor and get that "it's gonna be okay" feeling.
In this world - it's "All Spina Bifida, All the Time" - and while you're learning a lot and asking tons of questions and feeling adrenaline take you from class to class -at the end of the day you feel completely drained. More than that - completely overloaded. More than that - completely unhinged. Ok. So normally I might think that was just me. But I happen to know for a fact that it's not. Because more than one of my momma-friends left thinking "oh-my-stars-in-heaven-I-have-been-doing-everything-wrong!" Is that true? No. We were just overwhelmed with a list of "things to try" and "things to do" and "things to avoid" that it felt as if we were already behind - slacking in our parental duties to the little loves of our lives - and if you've ever felt that way - you know it's an awful panicky feeling.
And in the special needs world - you quickly realize that even though you're not a better get familiar really quick, because you are in charge. You are charge of figuring out what is in your child's best interest as far as medications and surgeries and a million little things that are just a little more difficult for your child (like potty-training, walking, climbing, feeding themselves, talking). And if you think having a team of specialists telling you want to do is intimidating...then you're head really spins when reality hits - the fact that it's not up to THEM, it's up to YOU to make sure your child achieves as much success and independence as possible (through often unconventional and unfamiliar means). And most of the time - you feel like you don't know what in the heck you're doing!
Eck! Oh no - throat closing up. Deep breath.... Let it out...
Special Needs Mommy rant over. :)

So in case you haven't figured out the title of this post yet. The above rant...those are my demons. The worries that keep you up at night. The stresses that make your heart race a little faster and your grip on perspective slip a little. The tears that sting your eyes as you sometimes get so mad that your child has to deal with these things. The demons that cause me to look at these new cute little SMO's - and feel a tiny lump in my throat.

(Btw...I kicked that particular demon to the curb within 24hrs. He was puny. Besides the fact that my son is running around in them (wow...that never gets old to say) these are so special because Jet picked out the "all-star" pattern himself. hehe. But that doesn't mean that demon still didn't try to get me. Little demons are especially sneaky.)

And these are the demons that fill your mind with phrases like
"I just wish...", "I don't understand...", and "It's just not fair..."
Yep. These demons are little monsters that can grow into big ones if you're not careful. And everyone will face them. They may not be the same ones as me. Or they may be exactly the same ones as me! (can I get an "amen" SB mommas?! ;) lol) But they are real. And as much as you try to stay positive and push those demons out of the way...sometimes you just have to face them. And honestly, they can't all be faced alone.
Some demons are just too big to fight without a little help.
And who does our Father in Heaven send to help fight our demons?...

Let me introduce you angels.

The sweetest little buddies on the planet. With their so-adorable-it-makes-mommy-teary-laughter. They are only 2 years old. They didn't say a word to each other. They didn't have to. They didn't have to be able to talk, walk, hold hands or share a toy. They just looked at each other. And laughed together.

I'm not kidding...these boys cracked each other up! Talk about the magic of Disney...this will go down as one of the most magical memories of my life.

Greyson and Jet have a long history. Their connection goes way back...even before our little miracle... back to the day Grey was born. The day I found Leigh and Andy's family blog just weeks after receiving our SB diagnosis...the day I saw the most beautiful little baby boy I had ever seen... the day my heart skipped a beat and my mind raced with thoughts of "they look so happy..." "so that's what the NICU looks like"... "he's absolutely perfect..." That was the day my prayer went from "please God make this go away" to "thank you God for showing me we can do this." And we did. Of course it was even more beautiful than I imagined, meeting our own little miracle. And sweet Grey will always hold a special place in my heart. I remember telling Leigh and Andy - before our friendship had really even began - that Grey was Jet's tiny guardian angel - and here I am today...talking of angels once again... and I sort of feel full circle. Greyson is an amazing little boy. And a very special angel he always will be to me...

Greyson and Jet - just 2 of the many, many little angels with SB that I count on to show me what this journey is all about. To remind me of the joy that comes even in times of trial. To teach me what it means to live with purpose, strength, joy and perseverance.
My dear friend Perspective loves these little angels.
They are a continual source of encouragement, inspiration, and hope.

And as for these ladies, they are also my angels...

...more, however, like my "Charlie's Angels"... :)
Cause these angels are always up for a fight...and they can kick some SB butt!
(I'm not really one who says things like "kick" and "butt" in the same fact it was even awkward to type it. lol. But sometimes there's just no other way to put it.)

They are my team. My fellow fighters. My support group. My mommies-on-a-mission.
My sisters. My heart.

Without these angels I would have broken down a long time ago. I'd be stuck on the side of the road instead of pushing ahead towards the goal. But they keep me on track. They lift me up. They let me know they understand. And the love of someone who truly understands...that is some powerful stuff.

God has blessed me with so many angels. I only wish I could name them all...but they know who they are. They read this blog you know. ;) And the fact that I can't even begin to give a shout-out to each one just shows you how blessed I am! And thanks be to Him for that...for none of us can fight our demons without them.
I can't imagine this journey without them.

And if that isn't you know the only thing that can make "The Happiest Place on Earth" even happier??

You guessed it...
Going with angels.

We had a little "dream come true" moment when Leigh and I decided to take the boys to Disneyland one afternoon after the conference. It was the perfect way to finish a long day of fighting demons.

Leigh has absolutely become one of the closest friends I will ever have.

She is not only momma to my son's guardian angel - but we are so alike in every way that matters. I feel so comfortable around her even though we've only "met" twice. I know I can trust her, rely on her, relate to her. When I count the blessings that God has given me through something I didn't want or expect - I count her twice. :)

And to spend a few hours with her and try once again to force our sons to be best friends (lol) - was awesome.

And as it turned out, no forcing was necessary this time.

(the boys contemplating whether or not Woody is "safe".)

It's decided that Jet will check it out first...

Nope. Not safe. Abort mission.

Then it was Grey's turn to check out his favorite guy..."Orie" (aka "Eeyore").

Nope. Not feelin' this guy either. Let's get out of here momma!

We probably only rode about 3 rides before it was time to go, but just being together - sharing our sweet boys and having our "momma moments" gave me a joy that could equal a whole year at Disney...maybe more.

(crack up at our moms! - our wing-women. ;) lol. Thanks moms! We couldn't have done it without you!)

It was one of my favorite moments of the summer. One of those you better believe this is just the beginning kind of experiences - and Leigh and I left once again with the understanding that these boys are going to be best friends forever. SBB4L! (Spina Bifida Buddies for Life...oh yeah...they will have a secret handshake and everything.) And when I go to sleep tonight - I'll have sweeter dreams...I'll have peaceful thoughts...I'll have beautiful memories...

Why shouldn't I? After all... I have angels watching over me.

"I <3 him."
"I (less than 3) him."
Get it? :)


littlepenelopelane said...

LOVE IT and Less than 3 you!! XO What a special post and you can get a big fat AMEN SISTER to that one!!!

krousehouse said...

Great post! Fabulous pictures!

Leigh and Andy said...

i'm bawling. like, seriously crying so hard. "mommy are you all done crying?" is what i have heard for the past 5 minutes. You know I feel the same way about you, who knew there was someone exactly like me in Georgia?!?! I missed you the second we hugged goodbye and I can't wait until we hug hello again. :) You are MY sbbfl!! It's time we make up a secret handshake! Love you, girl. :)

JourneyWithTheCrosiers said...

LOVE <3 LOVE <3 LOVE <3 that post and you!!! I cried a few too many times though. The new little supports are adorable. Nothing less than perfection!

ainemc said...

Amen indeed Joanna!
When I found out Caitlin had spina bifida, Leigh told me about her blog and I read it from start to finish, drinking in every word they had written and it also changed my perspective. From being terrified, to getting excited to becoming a mum myself. Leigh explained to me all the ins and outs of sb, what all the levels meant, she was amazing! You both are. Such wonderful mommas!

P.s. Could you add Caitlin to the sb buddies post :) Oh and I LOVE Jet's little SMO's, I've never seen them before!

Selina said...

I'm so glad I wasn't the only one who left feeling overwhelmed with emotion...Both good and bad. It was amazing to get to hang out w/ you and the rest of our angels, and I know what we learned there will help us in the future...although it still keeps me awake some nights. :)
Hugs sweet friend.

Anonymous said...

AMEN!!!!! Enough said. <3, Priscilla

The Dugan's said...

So I'm crying and laughing and feeling a little jealous all at the same time. Please tell me you are going to conference next year?!?!? Because I'm totally there....and I remember the first (and only) time I wrote "kick" and "butt" on my blog, I deleted it and retyped it like 10 times, and then realized there was really no other way to say it. Thank you for this made me smile :)

Jamie said...

A big huge "amen" from over here!! I wish I had searched for blogs when I found out Madi had SB, it would have helped encourage me. I sadly didn't get any good stories, just lots of doctors saying "cant". I count us lucky, though, because we've turned those in to "cans" :). If you are in to arranged friendships, madi is also a super amazing and sweet two-year-old with spina bifida ;).

Our family said...

Great post! Loved it!

Jill said...

I'm still laughing at KICK BUTT! HAHAHAHA! Oh, sometimes you just crack me up. I less than three all of you guys too (and that DID take me ages to figure out what everyone was always typing that for!). What you described there is EXACTLY why I am afraid of going to a conference. I like baby doses. Weaning myself into things. The whole concentrated 3 days of all of my fears seems a bit too intense. Would it be wrong to go and just hang out with you guys on the breaks and go to Disney?? I don't want to learn anything that I don't need to know yet. :( Maybe I'll volunteer to stand at the door or something. ;)

Big demons, little demons, you always describe things SO perfectly. Those little ones are sneaky guys. The big ones are just mean. I can feel them some days. Keep the lights on so they can't come out!!

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