"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
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