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Tuesday, October 12, 2010

In honor of spina bifida awareness month....

They said they saw the 'lemon sign'.
They said she had brain abnormalities.
They said there was fluid on the brain.
They said she had a neural tube defect.
They said she would need many, many surgeries.
They said she might struggle cognitively.
They said she would not walk.
They said we had a "choice".
But they forgot a few things.....

 She would be a fighter.

She would be beautiful.

She would be determined.

Her smile would make everything ok.

She would have an amazing sense of humor.

She would be strong.

She would find a way.

Nothing would slow her down.

She would be smart.

She would be full of life.

She would be full of love.

She would be our super hero.

She would be a blessing from God.

She would be perfect.

Choose life.

"Each child is sent into this world by God with a "Unique Message" to deliver, a new personal act of love to bestow".
- John Powell, S.J


Diana said...

Oh Jamie, I just balled at this post. All my love to Madi and the rest of your beautiful family!

Jessica said...

Your post brought tears to my eyes. It's exactly how I feel about Gage but haven't put into words! Your Maddi is beautiful! Thank you for sharing her with us!

Jessica said...

This brought tears to my eyes! This is exactly how I feel about Gage! Thank you so much for sharing Maddi with us. She is beautiful!

Summers Family said...

Beautiful post! She's adorable.

Amanda_in78 said...

Let me just wipe away those tears so I can type.
That was wonderful. When doctors become scary and use all those words, it is nice to see the child they are talking about.
I wish more parents who look up their child's scary diagnosis could find blogs like this. So that when they 'google' spina bifida they could see children like Madi!

Jill said...

I can only echo what everyone else is saying. I absolutely love this post. So perfect.

Jodie said...

A stunning tribute to her and to SB Awareness Month. You have just reminded me that although the outcome isn't what we wanted, the result made us better parents, better people, and better Christians....and bulletproof. Many hugs-

Anonymous said...

Yes, she is perfect! In every single way!
Beautiful post and beautiful little girl!!

Tiffany said...

Hello! I came across your blog from a fellow SB mom friend. This was beautifully written!! Your daughter is absolutely precious. :-) Her smiles remind me of my son, Logan. He has Spina Bifida: Myelomeningocele. Feel free to stop on by my blog at!!

Scasmflops said...

Beautiful post!!!! Everything that we know to be true about our Sb miracles... and everything we want others to know so that they will choose life. Thank you for putting this together. LOve it!!!!

Sandy said...

Our children give us so much more than we could ever give them. God knows what he is doing when he blesses us with these beautiful children. I fear for those who doubt God and do away with the blessings he had in mind for them.

Stephanie said...

This was beautifully written and made me all teary! Our amazing children are such a blessing!

Stephanie said...

This was beautiful. Your little Madi is beautiful! There is so much beauty in our kids that I can't even stand it. :)

Lyn said...

Amazing post. It brought tears to my eyes Jamie!

Anonymous said...

thank you.

Thara Sanderson said...

Thank you. My son has been diagnosed with spina bifida. This is really encouraging to read as a new mom to the SB community. Your daughter is so beautiful. Noah has myelo too. What is her lesion, Noah's is L1-2?

Jamie said...

She's about an L2 level :)

Leah said...

She’s gorgeous!! My daughter has the same level as her. But since no two children will be the same my Laurel does not have hydro. And we think that she will eventually rely on a wheelchair- she functions as if her defect level is L1. She likes to keep us on our toes like her twin brother her partner in mischief.

Anonymous said...

I love this

They told me that:

My child would be a paralyzed vegetable
My baby would probably have a learning disability
My boy will not walk independently either
My son would have severe bowel and bladder issues
My child should be terminated immediately

But they failed to tell us this:
He will have determination
He would have a good quality of life
He would be smart and friendly and funny

Holly said...

I love this.

This is what I was told prenatally at diagnosis day-

Laurel would be cognitively delayed
Laurel would never walk independently
Laurel would never get a job
Laurel would never have a decent quality of life
Laurel would be severely disabled
Laurel would never be able to live independently
Laurel would never have a boyfriend
Laurel would never have bowel and bladder control
Our lives would be crammed full of appointments tests and anxiety

Chloe said...

She’s amazing. When did you get them? I’ve been trying to obtain a pair of braces for Oliver so that he can finally practice standing up as part of his therapy regime. Does she have a wheelchair that she uses or not? Is it okay if I email you with some questions?

Jamie said...

Yes! My e-mail is We get our braces from Hangar Clinic, and all my girls also have wheelchairs, walkers, and standers.