An Anniversary

It was October 26, 2007, on a breezy Friday afternoon that Julia was diagnosed with spina bifida during an ultrasound appointment. I remember vividly the way the doctor described what my child's life would be like in heart breaking detail.

She wouldn't walk, she would face a life of surgeries and pain, she had signs of hydrocephalus and would most likely never have bowel and bladder function. He showed us the "defects" on the blurry screen and said words like lemon sign, banana shaped cerebellum, large opening on her spine, water on her brain, Chiari malformation...

He said he thought we should consider terminating the pregnancy.

I will carry the heartbreak of that day with me for the rest of my life. Today is the anniversary.

I wish he would have told me, "Your baby has some medical issues and will need a surgery, maybe more than one, but everything will be okay. She will be beautiful and strong and courageous." I wish he would have said "Congratulations, you're having another little girl!"

I wish October 26, 2007, would have been different.

I wish I would have known what the future would really look like...

Dance classes

Playing in the sprinklers

Running in the sand

Running circles around her doctors

Sisterly Love


I wish he would have said, "There will be some tough days, but the good ones will far out number the bad."


I wish I would have known then what I know now. Julia is perfect. She is beautiful, strong and fearless. I am the luckiest mommy in the world that she is mine. Everything will be okay.

Faces of Spina Bifida

This is what one SB mommy wrote about Spina Bifida in recognition of Spina Bifida Awareness Month. I thought is was beautifully written. Her name is Joanna and her son is Jet.



"I was one of those people who had never heard of Spina Bifida - until it came into my life like a sudden crashing wave. Surely there are others out there like me - but almost every time I tell someone "he was born with Spina Bifida" - and I'm all prepared with my gracious "it's okay if you've never heard of it" - they have heard of it - or at least they pretend to - and I think then why hadn't I?? It didn't really matter. I learned fast. Because when you're told your sweet unborn baby boy has a birth defect that will negatively impact his ability to eat, walk, talk, think, breathe, and virtually every area of his life - you want to know why. That is - after you tell the doctors you are not interested in terminating your pregnancy. Which they will encourage you to do - and every word they say will rip your heart out and replace it with fear and hopelessness. But once you make it through that, you realize it has prepared you for protection. Because you will spend the rest of your life protecting your baby from those who don't understand, those who don't care, and those who don't believe. So you begin. You start to read about Spina Bifida - it stabs at your heart with a pain like no other - with each fear, each unknown, each possibility of hardship your family will face. You panic, you pray, you research, you fall apart, you start again, you wait. And then your baby is born. You cry not only the tears of a mother who is finally seeing the angel she loves - but tears of worry, relief, and anticipation as you realize your journey is ending and beginning at the same time. The waiting is over in some ways - and yet you will never stop waiting on answers...treatments...insurance companies...doctors...test results...milestones. You realize that waiting is part of the game. Yet you know that even though waiting his hard - you'd wait for your baby all over again. Because in their eyes...their smile...their hugs...their breath...lies all the strength, joy, peace, and hope you'll ever need - while you wait. I was once one of those people who had never heard of Spina Bifida - I didn't know what it was - what it looked like - what it meant. But now I know. It's the face of my precious little boy - it looks like laughter mixed with tears and surrounded by love - and it means thanking God for His blessings, finding peace in His power, and begging Him for continued strength. Because living with SB isn't easy - but loving someone with it...is the easiest thing I have ever done."


- Joanna - Jet's Mommy.
www.babyboypenny.blogspot.com