Tuesday, July 6, 2010


I so enjoyed this past week with the stories from family and friends points of view. So many people are affected by the diagnosis of Spina Bifida. Siblings, grandparents, aunts and uncles, and of course friends. When we first find out about a pregnancy we picture that child, his/her life, their personality and all that goes along with childhood.

I remember looking across at my husband driving from the doctor's office and my heart just broke. I knew how much he would have looked forward to teaching Toby football, basketball, Tball. You name it. At that time I felt like all those dreams were left back at the doctor's office. I felt like because this was his son, his first son, he grief really was greater than mine.

The funny thing about that is I THOUGHT those dreams were left at the doctor's office, but really they came with us. They just changed and were reshaped. We still plan on basketball for Toby just in a wheelchair, we still are eagerly looking forward to the day he's old enough for Tball just in a walker(one more year to go) and he loves throwing the football around.

During those first few weeks of finding out his diagnosis I mourned a lot. I mourned the loss of a child that I thought we would have. I mourned the loss of his legs, of his bladder and bowel function, of the life he would share with gracie. I mourned and mourned and mourned. I just wish looking back at that time that I would have realized what Toby was going to be.

How his life was going to take shape. How many things I cried over that are just normal now. Things that broke my heart in the beginning arent anything like what I pictured them to be. The imagination is always more dramatic than reality.

We just do things differently. But we still go out and live our lives. Our lives are still filled with an incredible joy and peace. Yes, I have my rough days. But overall life is wonderful and Spina Bifida is just part of it.
Luckily for me there are numerous people that share those rough days with me. There are those who went through the diagnosis. Who struggle with the pain, and who now are equally amazed at how incredible our life is. I thank God for the ones who struggle along side me, who cry with me and then who rejoice and laugh when I realize, 'hey that's not so bad."
I hope some of you who have been following this blog are encouraged. I pray you find hope in our words. For those of you have been through this who have older children. Myabe children who are even adults now. Let me challenge you to pick up a pen or sit down and write a email to those people who supported you, prayed with you, cried with you and rejoiced with you as they met the baby that would change your life forever. Sometimes, it so easy to forget or to think that they know how you feel about them, but its always a good idea to remind them.

1 comment:

Scasmflops said...

I am crying alongside you all over again. I did and still do the exact same thing. I hurt myself, and my heart breaks for the things that I "think" I have lost in my son. But I cry even harder when I think about this being Bob's son, and all the experiences that father and son will have to alter to have together. But just as our husbands have become even stronger through this journey, so shall our sons. I love you girl, and I want to publicly thank you because you have been there sharing your heart and your faith to help carry me through.