In my daydreams..

...we're back at the beach.

Breezy, sunny days spent perfectly when you pack a cooler and head for the ocean.

Not that I'm not enjoying being back at home - because home is often just what you need. And after a busy summer - I'm looking forward to some fall days spent right here in our comfy house. But with school starting back again, and the hot humid Georgia haze making playing outside practically impossible - I have fond memories of our summer trip to California. I always do. Since my childhood my affection for this state has always held true - California makes for awesome memories. It's the place we always talk about - and the place we always make plans of returning to. It's the place David and my cousin Jenna plan on buying family compound for both our families to live. ;) (In their daydreams!)

It's just our favorite.

And on the kind of days when PT leaves you feeling frustrated and discouraged, your picky eater refuses his favorite lunch and then skips dinner, and there's 3 loads worth of unfolded laundry on the bed - you're in need of some de-stressing and reminiscing.

Remembering relaxed, playful, family time.

I remember last summer when Jet was not a fan of the sand - but liked being dipped in the water...this year the sand was a blast!

And about the hundredth time I said "Don't throw the sand" I realized I might as well have been the teacher in Charlie Brown.

It made absolutely no impression on him. And as my Aunt Juli pointed out "if we don't let him throw the sand we might as well go home now. It's all he wants to do!" lol. True. And we didn't want to go home yet. So...sigh...protect your eyes people.

As for the water...Jet was like not so much.

In fact...in Jet's mind the water was absolutely off-limits - not just for him but for anyone in his family. The very idea of Daddy walking towards the water was horrifying.

"Can nobody see what's happening here?! Daddy is going towards the loud, freezing, never-ending monster!"

So we pretty much were quarantined on the beach.

Well...Daddy managed to sneak off and have some fun.

But it was needless to say it was traumatic.

So for the good of everyone else at the beach with us that day - and to keep my son's heart beat at a normal rate - I stayed "safely" on the sand.

And he got a cookie. Cause that makes everything better.

And in return - he gave me an exfoliating leg scrub and gave new meaning to the word "sandwich".

But honestly ... there are worse ways to spend the afternoon.

And there are worst ways to spend the afternoon...than daydreaming about it.

DISCLAIMER:

For those who were as worried as Jet was...

No Daddies were hurt in the making of this blog post.

Daddy made it safely back to shore.

And we all are living happily ever after.

Remembering Ruby

Sweet Miss Ruby Jane went home to heaven the night after I wrote that post requesting prayers.

Her family describes a peace in knowing her fight on earth is over - but sorrow in losing such sweetness so soon. The impact she has had in her short life is phenomenal. With fundraisers and auctions going on to help the family pay the medical bills - and people all over facebook posting Ruby's photo as their profile pic and wearing pink and yellow to celebrate Ruby's beautiful life.

This little girl touched hearts.

Jet blowing kisses to Ruby in heaven.

While Ruby is now perfect and protected with our Father - her family is left here hurting, healing, and waiting to be with her again. Please continue to pray for this amazing family of faith.

Her mother, Ani, wrote the following on their family blog:

my arms are so empty. so, so empty. 7 months i held that baby in my arms, and now they are empty. it is such an awful feeling. no words can describe the pain my heart feels. a few days before her passing, i was trying to think of words to describe how my heart felt watching her suffer, and the only thing i could think of was my heart being dragged over hot coals. hot coals sound pretty good right about now. there is just no way to write out the anguish i feel. not only does my heart just ache and hurt beyond expression, but my whole body.
all day long i am in a constant battle with myself. one moment being overcome with grief and sorrow, and the next feeling complete comfort in the Plan of Salvation. i have to keep reminding myself of what i know to be true. it is what i cling to. oh, i am so thankful for eternal families.
the spirit was so close the day she passed on. i knew it was coming. i tried to convince myself otherwise, but it was whispered to me so clearly.
nothing really fell into place with her health. it was one road block after another. she was not meant to make it through her struggle. when the "what if's" and the "if only's" creep into my mind all day and night, i have to remember the prompting from the spirit. my father in heaven knew that i needed that. i fought so long and so hard for my baby, and i needed to hear that last day that He needed her Home with Him.
my arms will continue to long and ache for my daughter, but at least i know that she is in the loving arms of our Father in Heaven.

Please continue keep this family in your prayers.

Not the only one...

Sometimes it seems, just as soon as I finish writing about my fears - the demons that threaten my faith or the struggles we all sometimes face - that I am once again reminded that I am not the only one. And more often than not - my troubles seem to pale in comparison to another's. I think we can all agree - that in this life we all face difficulty. Sometimes it comes down to matter of perspective and we just need to press on - be thankful for what we have - not worry about what we can't control. But other times - it's heartbreaking...devastating. Sometimes there is nothing fair or doable or understandable about it. But no matter the source or size or severity of our trials - We have to remember we are not alone. We are not alone in our anxieties and troubles. We are not alone in our questions and confusion.

We are not alone in our need for help...for encouragement...for prayers.

And there is a little girl out there right now who needs our prayers.

Her name is Ruby.

She is beautiful. She is adored by her family. She is 7 months old.

And her liver is failing.

My heart sank as I saw her little face pop up on a friend's wall on facebook asking for prayers. I didn't know if my friend knew them personally or not - it didn't matter. When you know someone in need of prayers...you get the word out there. Oh no. Another poor baby is sick. I almost didn't want to read it. But I had to. And like always - it broke my heart to read her story. I sometimes think "God...you are so very wise. You are all-powerful and full of grace and mercy. I know you are in control. And you accomplish much by sharing these stories with me...but I'm starting to feel like nobody has it easy anymore. Why are all the children sick? Why are all the babies fighting for their lives or taken away too soon?" And I guess that's the point.

Nobody has it easy anymore.

Ruby is not the only sweetie that has been brought into my heart and prayer-list this year...this month...this week. The list grows in number almost every day.

Maybe it was always this way - and my eyes were only opened to it 3 years ago. But I've said it to many of my friends before - it seems that after we experienced our nightmare - I've regularly been introduced to someone else's nightmare. My prayers in are constant rotation with all the names of families and children and babies in need. And it's given me perspective. And it's given me resolve to pray for strangers in a way I never did before. And it's given me compassion, empathy and love for so many I never would have known about. But it's hard to stay positive. It's hard to keep coming up with words to say to these struggling families.

It's hard to keep looking into the eyes of these innocent children - picturing my own - and reading in amazement what they and their families are going through (always with God at the forefront I must say...and I don't think that is coincidence) and not feel completely drained. Discouraged. There is nothing I can do for them. But pray.

And you start to think "how many people can I say "I'm praying for you. It's going to be okay" before I reach my limit on prayers?" Thankfully the answer to that is "there is no limit". God has no limit. And while I may feel overwhelmed by the number of families experiencing pain or anxiety - God is not overwhelmed. And while I may feel hesitant to reach out or feel like there's nothing I can do - God doesn't hesitate. He can do all things. I may not have been up for the task of seeking out people to pray for - so God is bringing them to me daily. And I have to believe there's a reason - that this isn't without purpose. That my prayers must be powerful - because God knows that prayer is all I have to offer these people.

He wants us to pray for each other.

He isn't showing me people in need because he wants me to feel guilty, or like my trials are not important. He wants me to remember them. He wants me to come to Him on their behalf as well as my own. And when I start to think "I can't pray about ALL these people and my family...that's too much." I immediately laugh at myself - because that it ridiculous.

The easiest way for me to understand God's love for me is to compare it to my love for Jet.

If Jet were to skin up his knee and ask me for a band-aid (which I'm sure will happen more times than I can count) - I would give it to him. I wouldn't refuse him. I want to ease his pains, fix anything I can, help him in anyway possible. Because I love him. More than myself.

And if Jet were to come to me and ask for a band-aid on behalf for his friend, his classmate, his cousin, or a complete stranger...would I deny him? Of course not. Not only because I love my child - but because it would bring joy to my heart to see him taking care of others. Loving them. Helping them. Bringing them to me because he trusts me, he loves me, he needs me.

I cannot think of a greater blessing.

We are all God's children.

And He wants nothing more than for us to come to Him, trust Him, love Him, need Him.

And His love is bigger - for if I bring another person to Him in prayer - I am not bringing Him a friend, a classmate, a cousin, a stranger...I am bringing Him one of his other children. And He will never be too busy, too overwhelmed, too distracted...to aid His children.

Will we always understand His decisions?

No.

Will we always receive the help we expected, specified, and wanted?

No. Not always.

Sometimes His help comes in ways that we can't see or understand or recognize until much later. But He will help us.

If we ask Him.

So please. Ask Him. Just go to Him in prayer and ask Him for help on behalf of Ruby and her family. Pray for her healing and comfort. Pray for strength and renewed faith for their family. Pray for the friends and family members who keep a constant vigil over her. Pray for the countless others in your lives that you know need your prayers...you can't pray for them too much, too long, or too often.

Just pray.

Our Father is listening.

And that is no small thing.

It is everything.

Psalm 50:15
"Call upon Me in the day of trouble; I will deliver you, and you will honor Me."

Read about Ruby

http://aniandmatttaylor.blogspot.com/

"Little Jewel Needs a Liver Transplant"

http://rubyjanetaylor.blogspot.com/

Angels and Demons

Okay...maybe not the title you'd expect for the promised Disneyland post...but it fits...trust 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. Sounds...fun? confusing? ironic? lol. Now I don't want to be misunderstood...so 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 doctor...you 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...

Phew!

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 to...my 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 sentence...in 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 enough...do 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? :)