Thursday, October 6, 2011


October is Spina Bifida Awareness month. I'm going to kick off my month with a post about the one question people never want to ask. "What is it like?"

There is not any explanation I can give to make someone understand the emotional aspect of being a special needs parent. No words relay the exact balance of all the emotions felt. Here is my best shot at an answer.

When a woman becomes pregnant she is walking down this lovely road. The road is flat: a nice, easy, relaxing walk. You look at the flowers and just enjoy the pleasantness of the road your traveling down.

Then one day you find out that your not suppose to be on that road. You find out there is a special road for you and you must get off of this level, easy road. It's hard to leave. Everyone you know is walking down that road and loving it and you just know this other road is horrible, but you have no choice so you go.

And then your there. Standing at the beginning of that road. You feel alone, scared, and know that there is no way you are going to make it down that road. You want to go back to that first road with your friends and family. The road is long. This road you are staring down isn't a bumpy road. It isn't even full of hills. No, this road is in the mountains. It is full of lots and lots of mountains.

You haven't trained for mountains. You have never climbed a mountain and you know it isn't easy. Climbing mountains takes sweat, tears, and a lot of strength. You could fall, you most likely will. This is horrible. You know it is the worst thing that has ever happened and you don't understand why God would do this to you.

You walk the begginning of this road and though simple, you are still very upset by just being stuck here. Then you arrive at the mountains. They are tall, and rocky but forward is the only direction you can go. It's hard climbing those first few mountains. You fall down, you cry, and want to just scream. But you get up. You keep going. And you make it to the top of the first mountain, then the second, and all the rest after that. The climbing gets easier as you go and soon you can climb mountains with ease. The tallest mountain in the world doesn't even make you blink.

While on this road you realize that maybe it's not so bad. You discover other people on this mountainous road. Good people who help you. They take your hand when you fall. They tell you all the shortcuts. They rejoice with you as you make it to the top. You realize that the journey your on is not at all about the climb, it's about getting to the top. When you do make it to the top of those mountains you feel happier than you have ever felt. Each mountain gets better. The climb is easier and success is more overpowering.

It's a simple realization. The first road was simple. Everyone was on it. But don't mountains have the best scenery?

an update

Here it is october and i am just now updating. O I have been so bad on my blogging! I am super busy with my FINAL year of nursing school and Lane has been busy himself. He is making leaps and bounds. First, I cannot keep track of this kid! He is crawling EVERYWHERE and is into EVERYTHING. Nothing stops this little boy and that is a miracle. We are working on pulling up and cruising and he is so very close! I am going to try to upload some videos next time. We recieved our walker this month and lane is standing at it but we are not walking yet but that is coming soon I'm sure.

Medically speaking Lane is as healthy as a horse right now. Feeding is going great and we are not using the g tube at all. We are not decannulating this fall as planned but are going to give Lane a little more time and try for this winter.

Be looking for an upcoming post about Spina Bifida Awareness. October is spina bifida awareness month so more to come!

Our walker

Look who's feeding themselve!!

standing up....

grandma's dog which lane really loves...

and the main man....

so sweet...blowing mommy a kiss...