Thursday, October 21, 2010

Boy in the Big Red Chair

When milestones make your stomach lurch and your heart stop.
Yep - I came around the corner the other day to see Jet here.
Sitting happy-as-you-please in his if he'd been sitting in it every day since he was born.
Of course after the high pitched "Jet!" I managed to squeak out - I walked (not to quickly so as not to scare him. lol. Like he's some bit of wildlife I'm trying to get a closer look at) over to him and made sure he knew how to get down in a way that wouldn't require stitches.
He already knew how.
Okay. So yes we've been practicing getting off the couch or getting down the stairs...but I didn't know for sure he'd been paying attention. Until now.
And I must say he impressed me.
(Until he fell off it into a hands and knees *splat* the next morning at PT...way to show off to your therapist Jet...I guess he wanted to make her feel needed.)
And though he has since proceed to promptly stand up in it as soon as I turn my back... I keep the chair turned around facing the wall unless I'm right there to correct such dangerous behavior.
We have enough hospital visits, thank you...
your majesty.
(because this is what happens when you edit pictures too late at night....and because we could use a little silliness right about now. :) He'll forgive me someday.)

Wednesday, October 20, 2010

Full of Life

Today was Spina Bifida Kids Worldwide Day of Prayer. A small voice that turned into close to 3,000 prayers lifted up - and those are just the one's we know about. And as I thought about the purpose and power of these prayers - I thought of all the sweet little babies who are born with SB - like sweet little Kai - not even day old yet - and already so strong and full of life.
I got to visit this little angel today. And in his honor I wore the "Believe in Miracles" necklace that I wore every day of pregnancy with Jet (starting from when I found it just a few days after his diagnosis).
My mom, sister, sister-in-law and mother in law wore it too.
So very special.
I love what this necklace symbolizes to me. And as I wore it, and as I prayed, I thought of my own little miracle and the day he was born...and how perfect he was...
And is...

And as I prayed I thought of how much we have to be thankful for - and how God has protected him and us from what could have been - from ending this miracle life before he had a chance to shine.
Were we afraid? Yes. Were we heartbroken? Yes. Did we wish it were all a bad dream? Of course.
But God never allowed us to lose faith. And He brought us through the darkness and gave us HOPE. Beautiful, uplifting hope that allowed us to see past the doubt and fear and death - to pure, amazing light.
And I prayed that light and hope to shine on all the mother's of unborn babies today - babies that have yet to be born and their lives are already being threatened. Threatened by fear. Threatened by ignorance. Threatened by selfishness. Threatened by the perception that if they are not "perfect" they will be happy...they will not be easy...they will not have a fulfilled life...
...they should not be given a chance at life at all.
Oh how God must cry.
How we all have cried.
And as I prayed I asked for patience and compassion. For love and strength. To continue to live my life in a way that shows what a fulfilled life truly is.

And just what happy looks like.

And that nothing worth living for is easy...

And no one is easier to love...

This lullaby is a favorite of mine.
And today it is dedicated to all of our children,
to sweet baby Kai,
...and all the miracle babies to come.

All you Are
Where did you get those eyes so blue-
They're from the sky that you passed through.
And what about that little tear -
Did you find that it was waiting for you here?

And what about your little nose -
He knew you'd need it for the rose.
And as for your soft, curly ear -
He knew that there'd be songs for you to hear.

For all you are and all you'll be,
For everything you mean to me,
Though I don't understand, I know you're from the Father's Hand.

How can it be that you are you?
He thought you up and so you grew.
Because you're mine it must be true -
That He was also thinking of me too.

For all you are and all you'll be
For everything you mean to me.
Though I don't understand, I know you're from the Father's Hand.

Monday, October 18, 2010

Spina Bifida Worldwide Day of Prayer

Wednesday, October 20 · 12:00pm - 1:00pm EST
11:00am - 12:00pm CST
10:00am - 11:00am MST
9:00am - 10:00am PST

LocationWherever you are

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. Parents expecting a child with Spina Bifida, those afraid and considering termination. Please pray that they will go to their appointment with an open heart and mind, that the doctor will give them a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give these families a peace beyond understanding and a clear indication that they should keep their baby or give it up for adoption. There are many mothers willing to adopt these babies.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Friday, October 15, 2010

Not Alone

Today I read an expectant mother's blog post about her family struggle - to keep or terminate their unborn baby who has just been diagnosed with Spina Bifida. She was asking for opinions on which they should chose and I could tell she was really weighing her options. I have to admit I felt shocked - having a little boy with SB and being so marvelously blessed - I was stunned as I immediately teared up and my heart screamed "no!" I felt the pain of that day - that heart-stopping day when we thought we were losing our baby. The day we were given that same choice but with a much worse diagnosis. If there is anything more frightening then facing the choice between giving birth to a child incompatible with life or ending your child's life before they are born, then I'm not sure what it is. I have never felt more lost or afraid.
But then the morning came.
And if you've read Jet's Story you know how God in His mercy granted us a miracle. And the first miracle was when He made the choice for us. We never even had to. Not that I can say I would have chosen differently - but I remember distinctly feeling like I couldn't ever speak again - much less "choose" a plan of action. Until God gave me breath again...and gave my son life.

Since reading this mother's thoughts and fears and taking compassion on her - for I understand her pain so completely - I wrote her the thoughts in my heart and pray she finds the peace and wisdom she needs get through this and feel alive again.
And then I went back to the blogs I visit the most - the friends who encouraged me before I even looked at my beautiful son and told me "our children are amazing gifts - it's going to be okay". I reread their words that mirrored my own and prayed they would find this mother and help her to see what the reality of Spina Bifida truly is.
nd the reality is Happiness. Strength. Gratitude. Love.
And you don't have to take my word for it...

"September 24, 2008 was the day we found out about Greyson's spina bifida.... As I sit here tonight, I can't help but wonder if there will ever be a time where I feel like that person again. The person I was before September 24, 2008. That person didn't know anything about spina bifida...That person didn't lie awake at night feeling like I didn't do enough PT that day, or lie awake going over the pros and cons of getting KAFOs over AFOs, she didn't worry about appointments, or make a list of the different medical supply companies to call trying to find the right catheters, or know the fear of the surgical family waiting room... BUT, that person didn't know how much she could love another person. Didn't know what it was like to cry tears of joy over her baby sitting up by himself for the first time, or rolling over. She didn't know what it would sound like the first time her son would say "mama" the or what it would feel like the first time he would give her a hug. She had no idea how she could just look at his face and know exactly what he needed. I never knew this kind of love before and I am SO GLAD that I will never be that person again. The person who took things for granted...took life for granted. As hard and as sad as that day life has changed in the best way, I have become the person that I was meant to be...this little guy's mama..."
Leigh : Mommy of Grey

"Tomorrow marks the day I stopped breathing. The day I thought things would never be okay again. The day I was sure our life as we know it was over. Nothing would even be confirmed for another two weeks, but in my heart I was sure my baby was not going to come out on the winning side of those little statistics.
We have come so far in a year. Now, I breathe in his loveliness every hour, we're better than okay and our life hasn't stopped. I have to remember this and just be thankful that those 4 horrible months are over and that the last 8 have been so much more amazing than I could've imagined."
Jill : Mommy to Kingsley

"I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying.
I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly. And this is what I got...a handsome, silly, train-loving, outgoing, stubborn, brave, happy, running, fun-loving, totally-adored, musically-gifted, hard-working, superman!Some might say, "Well, sure, but he's an exception." But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God."
Colleen : Mommy of Nate

"When we first hear that our child has a disability, we worry so much because of the unknown. We worry because we feel they will be incomplete. Questions like "will my child ever walk" creep in and haunt us. Then comes that magical arrival. Maybe days, maybe weeks, for some even agonizing months - full of worry but also a large lesson in trust. Then, we finally get to take that child home and from that day forward we begin to experience that, disability or no, there is absolutely nothing missing. We begin to see that the only thing that was "incomplete" was our understanding of what love and family is really all about. Concerns and worries about our child's future and well being - they are still there, but as that love grows, as that incompleteness of understanding is wiped away, the concerns and worries take their proper perspective and become much more minor inconveniences in a life that is more full than we could ever have imagined."
Karen : Mommy of Carson

"I thought of this, when I thought of her (an expectant mother's) worry, and the worry I had, and the joy Charlie brings.
If I could "fix" Charlie, and take away Spina Bifida, and undo the need for the shunt and give him full function, I would. But - if God called today and said they had a perfect model, with working legs and no Spina Bifida, who was otherwise just like Charlie - but the catch was, I would have to give back the Charlie I know and love -
I would say No.
No way."
Jennifer - Mommy of Charlie

"...Our children are much more than their disability. Our children are as much of a blessing as any other child...sadly ANY child could be diagnosed with a disease or illness at any point in their life and most parents wouldn't stop loving or parenting them. You just love your children unconditionally and you work it out. You find a way to be better because of it."
Nicole : Mommy to Annabelle

"Nellie is an amazing blessing in our lives. We have more challenges in our lives than the 'average' family, but I can assure you we have more fulfillment, joy, appreciation and love than ever imaginable. There was a time in my life when I didn't think I was up for this challenge, but now I can't imagine my life without it.
We love you Nellie. Don't change!"
Megan : Mommy of Nellie

"I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about this diagnosis, but it really isn't.
It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.
Spina Bifida has brought me clarity....
To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments...
It has given me the gift to realize the strength of my partnership... we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture...
today I celebrate the gift of Spina Bifida - that I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings."
Amanda : Mommy to Nick

"Caleb is not a mistake, he's perfect. I can't imagine my life without him and I don't want to. I have never, not once, not even for a second regretted giving him a chance at life. What if I had listened to that doctor? What if all these parents had listened to their doctors? This world would be missing some pretty amazing people."
Cassie : Mommy to Caleb

" I know, with certainty, that my life is richer because I have a special little girl...She's a rockstar. And she makes me believe anything is possible. I see perfection every time I look at her. Ten perfect tiny figers, with ten perfect tiny toes...A smile that lights up a room, and a giggle that makes you forget whatever you were doing and join in....Perfection. It's the same perfection I see in Mason. They are my babies, and they are perfect...I truly believe that God does not make mistakes, and He never gives us more than we can handle. Life is what we make it, and perfection is really just a matter of perspective. I know my perspective has changed...and all for the better. Ten fingers. Ten toes. One heartbeat. One life that I cannot live without...perfection."
Selena : Mommy to Maddie

"I am the mother of a handicapped child. It isn't a tragedy. It's the most beautiful thing that has ever happened to me, because now I know what it is to truly love-it's sacrifice. It taught me compassion, understanding, and patience. Because before I gave birth to my baby, it was all about me. My life revolved around my own conveniences, and comfort was my only concern. Now, I worry less about myself and more about others. It has made me a richer person; maybe not monetarily, but spiritually.
So if I look flustered or tired, sad or stressed, know that my life wouldn't be better if my child were never born. If you feel helpless offer help or a kind word instead of criticism. You might as well stab me in the heart. My child's life is worth living! Not just because I wanted mine, but because it's a true gift from God."
a quote shared by Michelle: Mommy to Brendan

"My name is Joanna, and my son is a gift. My heart is full as I look at how we've been blessed. My soul is richer from this journey we are on. God has brought me through the worst nightmare of my life - and given me the baby of my dreams. I cannot deserve him. God is so good."
Joanna : Mommy to Jet

Monday, October 11, 2010

Before the Morning

Last night I met a dear friend for coffee for the second time in 2 weeks - and you mommas out there know that just DOESN'T happen without the stars aligning just so. We've been friends since middle school but haven't seen as much of each other as we use to - it's been so nice to reconnect with her. And this dear friend happens to take beautiful pictures. And she took some precious ones of my little boy and I a few weeks ago. She gave them to me tonight...and no surprise...I love them. I'd seen a few of these before - but to look at them all tonight in order was like a little story - full of sweetness and simplicity and real right-in-front-of-you love.
And in the spirit of SB Awareness month I wanted to share them with you - because to me - they express so genuinely the reality of this beautiful life we live - with Spina Bifida.
It doesn't control us.
It doesn't define us.
It doesn't stop us from having the most beautiful miracle babies...
with the most glorious smiles...
and the sweetest sugar...
It doesn't keep us from taking them to the park...
exploring God's creation...
(grass is not one of Jet's favorite creations...)

It doesn't keep us from singing "A Song of Sixpence"
(watch out for that black bird...)

and laughing every chance we get.
And though it threatened, SB did not deny us the great blessing of walking hand in hand...
and basking in the warmth of the sunlight....
...and each other.
Because all of that fear that threatens to suffocate you when you first learn of SB, or when days of hardship weigh on you and bring ominous clouds of doubt, all that darkness...cannot hide the light...
the beautiful light that is always around the corner...
glowing brighter...growing stronger...
ready to break through the darkness.
And let me tell you - it's an amazing feeling.
And it's a beautiful life.
There is a song - and every time I hear it I feel like it was written for me. (It's playing now -you can rewind and listen to it on Jet's play-list at the top right of the page). It is an amazing testiment to what I felt like when we first heard of SB - and what so many of us feel at different times in our lives. It expresses so perfectly what I would say to an expectant mother, father, family - who is scared and so lost at the thought that something has gone wrong with their unborn baby. Because fear for your child - it's one of the deepest hurts you can have.
So every time I listen to it's lyrics I am reminded (and yes I usually cry...surprise right?) of how some of the hardest moments in our lives...are just the dark before the morning.

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so say a prayer
and hold on
cause there's good for those who love God,
But life is not a snapshot,
it might take a little time, but you'll see the bigger picture

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

So hold on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the dark before the morning

Once you feel the weight of glory,
all your pain will fade to memory
once you feel the weight of glory,
all your pain will fade to memory

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

So come on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
is just the dark...
before the morning

Wednesday, October 6, 2010

Trucks and T's

There are so many little things Jet does that make me smile and say "could he be any cuter?" And there are even more things that make me shake my head and say "could he be any more of a little BOY?" Jet is a "boy's boy" from his instinctive desire to growl and clinch his fists at me when he's angry right down to his appreciation of all things noisy and messy. Aside from his deep love for "The Princess and the Frog" which might be deemed more of a chick-flick in kiddie world - he is all snakes, snails and puppy-dog tails. And in this tradition he has a strong devotion to his cars. He has a dump truck and a cement truck to be exact - and he loves them both. They were the only "baby friendly" cars I could find that didn't have tiny little swallowable pieces and now that he has learned how they move - boy oh boy - he's in love. He scoots them all around the house (once again the hardwood floors are in his favor) and will go on like this for an hour.
It's hilarious. It's adorable. It's such a boy thing to do.
I love it.

In correlation with October being Spina Bifida Awareness month, some speical friends of ours -Leigh and Andy Gibbs (Grey's parents) - have designed a T-shirt to honor our little SB heros. :)
The front
The back

The line down the back is representative of the spine and the words really express what it's like to live with Spina Bifida - and what it means to us. I think it is perfect and a great way to spread the word about SB. Another friend of ours, Kari (Toby's mom and originator of The Journey blog) has made the T-shirt available to order HERE at her buisness blog I can't wait to have ours and get a family picture of the 3 of us wearing our matching t's.
The T-shirts are 13$ and are available in kids and adult sizes.
They will be only be on sale until October 13th so don't wait! Order now and help raise Spina Bifida Awareness! :)

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