Wednesday, May 26, 2010


My favorite picture in our house is one that was taken ONE year ago... within minutes of meeting our baby boy for the first time. Even in the rush of nurses and doctors, his Daddy captured the sweetness of the most precious moment of our lives in this beautiful baby picture.

And now, not only does it sweeten my dreams in a frame by my bed that reads "Always Kiss me Goodnight". But it brightens our hallway with it's simplicity and innocence in a frame that states quite perfectly "There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." You can guess which way we live ours...

And today we celebrated our little miracle ALL day. :)
It began with a breakfast fit for our little prince - ham and cheese bagel sandwich, apples and pears baby food, and a perfectly portioned pink birthday cake donut from (where else?) Starbucks. :) And boy did he FEAST.
I've never seen him eat so much.

And after conquering his breakfast...the day was filled with more food (ice cream and nuggets at Chik-fil-a of course), family (both in person and through numbers texts and phone calls of birthday wishes) and of course...

WAIT! Don't forget a birthday cake! It's a tradition in my family to have a simple pound cake for your first birthday. So Jet wanted to be like his Mommy (and his mommy happens to still love pound cake) so we had second slice of birthday cake. (Yes - we had a "pre-birthday" slice of cake with Grandmother and Grandpa last night at dinner. Jet knows you never turn down a piece of cake!) So like the donut this morning...this piece of cake got a PIECE OF JET! GRR!
Don't worry - I didn't let him eat the candle.
But I think I figured out why he went on a hunger strike a few weeks ago - he wasn't sick - he was preparing! Fasting so that he could get the most of his celebrations this week and EAT ALL DAY! lol. ;) So glad his appetite is back...I wasn't ready to see those rolly arms and legs go just yet. And you know the best way to keep those chubbies nice and plump...
Let Them Eat Cake!
Thank you to all our friends and family for the birthday well-wishing.
We are well.
And our wishes have come true.

Tuesday, May 25, 2010

What a difference...

...A year makes.
Yes - that is the same shirt and yes I can't believe how huge I was. Or that I'm publicly posting it to remind everyone! lol. But the memory is SO happy - because one year ago today we were going over our hospital checklists, packing up the car, setting the alarm for 4:30am and dreading the get-up because we didn't expect to sleep much that night (or many nights after).
A year ago today was the day before our little boy was born. :)
Excited. Nervous. Uncomfortably pregnant. It was unreal then...yet couldn't feel more real tonight just thinking about it. I remember the feelings so distinctly. I remember the anticipation and the prayers we said before bed. I remember getting up the next morning (cursing David for getting Starbucks when I wasn't allowed to eat or drink anything!) and thinking...this is baby is coming...and he's gonna be okay.
That is if I don't pass out from this griping anxiety. lol.
I was so confident that God was taking care of him...but I still felt a horrible panic when it came time for the surgery. The memory of wanting to rip the i.v. from my arm and run (okay probably waddle) very fast out of the pre-op room is still at the surface of my most vivid memories.
I remember the whole family arriving. I remember David laughing at my horror that this was actually happening now! I remember how great my doctor was and how sure of everything. I remember the noises - the beeping, the nurses talking, the air flowing helping me breathe.
And I remember hearing the cry.
That first, amazing cry.
The most beautiful sound - so sweet - bringing instant relief - glorious introduction - answered prayer.
I felt the tears of joy and my whole countenance transition from worry to the most calming feeling of serenity I had ever experienced.
The feeling of being totally cared for.
The feeling of reaching a safe place of rest.
The feeling of completeness.
I'll never forget that feeling.
And I'll never forget how much we are loved by our Father in Heaven when I think of that day,
the peace we received,
and the gift we were given ~
Our Little Miracle.

Monday, May 24, 2010

Let the Birthdays Begin...

With Mine! (lol)
This weekend we began the countdown to the big O-N-E for our little man (don't make me cry)-
Yours truly had to sneak in her birthday first. May is a BIG birthday month in our family and towards
the end they all get crammed together. lol. But I have a few family members in particular (Aunt Kelly. :))
Who REALLY put the "Happy" in "Happy Birthday." So we did HAPPY!
Okay I'll tell you - I turned 26 (ahh!) on Sunday and I have to say so far 26 has been amazing!
A good cookie cake is the perfect kick-off.
Caution: watch out for bursts of flame!
My mom took some pictures of the 3 of us (you momma's out there know that NEVER happens!)
A rare a perfect moment - me with my boys. The best present.
And check this out...
I can't believe how big he's getting. And standing! Of course we're holding on to him
like perfectly cautious parents but he is STANDING none the less. :)
And can you believe how cute?!
Uh-oh...somebody's getting bored.
Momma's Boy.
...and Surprises!
Could there be a better birthday combination?
Thanks so much to my fabulous family and friends who made this one of the most special birthdays I've had yet!

Thursday, May 20, 2010

The Grass is Greener... your own backyard. :)
I know I have sometimes been guilty of having "the grass is greener over there" moments. There is always that friend who always looks so stylish, or that family member who is so creative, or that neighbor who's yard is consistently "yard of the month." Usually I feel inspired or motivated to take action...but sometimes you just feel inferior. And "the grass is greener" feels more like a weight on your chest than fire under your feet. And in the world of SB - it's sometimes better just to "keep off the grass". There is always that child who is sitting, crawling, standing, walking....before your child.
There are those babies with super-human powers that defy the natural developmental stages and are running around at 9 months...and honestly those don't really get to you
...because you know that's not the norm.
And then there are those babies who are advancing beyond your child but are your child's same age...and those sort of start to get to you...
but you know every child is different so you can shrug that off to.
And then, there are those children who are younger than your child...who were not sitting up when your child was, or saying "dada" or starting to crawl...and are now walking around effortlessly...and you see them walking right into the most beautiful green grass...

And you feel that twinge of "am I doing something wrong?" or "am I not helping him enough?"
And worse is the reminder that your child "shouldn't be doing this's normal for SB."
Isn't that the term "normal" can seem so... not normal.
Using word normal and SB in the same sentence seems both contradictory and natural.
Our lives are not "normal" in the way that they are not always easy or predictable or able to be controlled....but then again...whose are?
Are any of our lives are free from frustration or worry?
Free from feeling left out or wanting to fix things or experiencing sadness?
Free from wanting the best for our children and always wanting to give them more...
then marveling how we could not ask for more than what they give us
The love they give us every day.
Their smiles that warm us up.
Those little ray of sunshine smiles that heat the earth...
...and make the grass greener... our own backyard.

Tuesday, May 18, 2010

The Monster under the Bed

Remember as a child when there was something you feared that wasn't necessarily tangible. Something that you hadn't really seen yet...but knew was lurking. Something that hadn't hurt you...but you were afraid it could. Something that you weren't certain other's really believed was even there...or at least they weren't aware of it like you were.
Something like a monster under the bed.
That's what Spina Bifida is to us.
It's hidden. It's illusive. It's unpredictable.
It's easily forgotten when it's sunny and you're playing outside.
It's terrifying when it's dark and you can't see what's lying in front of you.
Like the shadows on the floor or the mysterious noise from the closet, it lurkes.
It's not obviously scary like the growling, chained up dog in your neighbors yard. And it's destruction is not easy to spot like a fire or tornado. But it's scary. And it's destruction is formidable. And though it may not always seem tangible. It's real. And the fact that others can't see it, and that sunny days make the shadows disappear, make it easy to live unafraid...most days. And that's what makes it even scarier.

Monday was not nearly one of our scariest days...but it wasn't without shadows. It started at 9:30am with a visit to the pediatrician. Jet has been "off" the last few weeks...appetite low...fussy...not sleeping as well as he usually does....did I say FUSSY?! (lol) But nothing really horrible. No fever. No inconsolable crying. No vomiting or other symptoms you look for in a sick child. Just not himself. Now my fellow Mommies of BWS (Babies With Shunts) understand that "not themselves" is an early symptom of a possible shunt malfunction. Loss of appetite, fussiness, vomiting, fever, etc. are also all signs to watch for. Well...Jet didn't have all of these, but he had some. And while my gut told me he was okay - I was worried enough to check it out.

So we went to the pediatrician who proceeded to check for ear infections, UTI, a cold, ANYTHING that could explain the change in behavior the last few weeks. After some poking and pricking and searching and cathing and CRYING! (ahh!) they found nothing.
No illness. No infection. No news is good news?
Not so much. Not yet anyway. I knew where this was going.
In that moment I caught a glimpse of what could have been a green, hairy arm reaching out from under the bed to grab me and the doctor said "with Jet's history, I think we should call his neuro"
- which translates - it could be his shunt.
Well I could see on his face that he thought it WAS his shunt - I really didn't think Jet was acting bad enough for this to be the case - but the worry seed was planted and we had to make sure. We were off the hospital.
To the ER.
No one wants to go to the ER. It's loud. It's a long wait. It's germy. It's just not where you want to go after already spending hours at a doctor's office. But there we were. Jet sleepy and ready to be home. Getting hungry again but not allowed to eat until the doctor gives the okay. More poking and examining (by this time Jet is crying when anyone walks into the room) one CT scan (a HUGE answer to prayer that he stayed still), a series of x-rays and endless rounds of "happy birthday" later (Jet's new favorite song...we've been practicing...:)) we were done.
At least we hoped we were done. The results would take a little time.
So we waited.
And rocked in the squeakiest rocking chair known to man.
And waited.
And played on the 2 foot radius of the hospital bed.
And waited.
And went through the contents Nina's purse.
And waited.
And called Daddy (bad idea...Daddy on the phone is just not the same apparently).
And we waited...till the doctor came.
And then we listened to the doctor
(Jet hiding in my neck and me mentally kicking the monster back under the bed).
And thank you God - all was well.
Nothing to fear.
We had turned on the light and searched under the bed only to find some old tennis shoes and a few dust bunnies.
No monster this time.
But like all monsters under the bed...we know that doesn't mean it's gone for good. It just means it saw the flashlight or heard the grown-ups coming and moved to the closet or something.
(Monsters are tricky like that.)
But for now, we feel better. We feel safer. We feel thankful.
And with the assurance that the monster is at least gone for now...we can finally rest. We can close our eyes and give in to the sleep that inevitably follows days spent at the doctor
...and of course, chasing away monsters.


Thursday, May 13, 2010


Jet and Mommy rode in the car,
Down to Flordia (very far)
with Nina, Papi and Uncle Nate
To see Aunt Kayleigh Graduate!
Some yummy coffee will help keep
the grown-ups from falling into sleep
It's okay for babies to rest,
Then a break of "superman" flying is best.
Finally we find Aunt Kay!
Family Fun time on the way!
Fun in the Sun...
A dip in the pool,
Mommy that was really cool!
Speaking of cool...who could these cool cats be?
A cute pair of graduates down at FC
Among all these people the baby is shy...
And he's really not sure about this guy...
But a kiss from Aunt Kay is a calming touch,
Congratulations Aunt Kay! We love you so much!
So much to be proud of,
We're beaming with joy...
When we got home
we had a CRAWLING boy!!!
The whole trip he wasn't aloud to get down,
For a baby there's just no good spot to sit down,
He went from person to couch to bed to car
(He was never aloud to go very far)
So when he was home and could finally move
We were shocked to see him really get in the groove!
Such a great accomplishment! Let's give a cheer!
The Jet man is crawling...and TROUBLE is here!

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