Friday, October 15, 2010

Some thought's.....and much needed Prayer

Now typically I am not a person to judge and I completely understand going through a dark time in ones life, but something has hit me to the core and I am so deeply upset by it.

Now nothing gets me more upset knowing that people get misleading information about Spina Bifida which leads to a child not given a chance at life. Now where this is coming from is a Mom who is in the position we where in a year ago. Confused, sad, mad, and I remember all those feelings like it was yesterday. So with that said she came to our Spina Bifida online group, She was given an outpouring of support from all us parents. Questions answered, encouraging words. This journey is HARD, but it is so much more rewarding. She was open about being unsure about termination, she was given kind messages about why not to terminate, why all the women here did not terminate. But she is undecided whether her baby is worth giving life to. She told us she looked at our blogs, our children, and still was not sure her baby deserved life.

Now I wont lie this really bothers me an saddens me because Emma is worth all the pain and burden(if you want to call it that) of it all, but this is not what really got me so upset this women put a post on the board to please go to her blog to vote on whether she should keep her baby that has Spina Bifida or terminate. Now first of all why would she ask a group of mothers to vote for something that they clearly have already decided. And Most importantly anyone can vote and to have people help decided the fate of your child is disturbing to me on so many levels!!

Please pray that she finds the answer she is looking for because at this point thats all we can do. With that please read because it touched me!

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice.


  1. The most frustrating thing is knowing what an amazing gift our kids are, and having someone that just doesn't see it that way. I pray her eyes will be opened...Thanks, Lexi. Emma is such a beauty!

  2. Thank you for your post. well said. Praying.

  3. Hi! I have no idea how I got to your blog (haha!) but I also live in AZ and my 3.5 year old son, Brendan has spina bifida. Your little Emma is beautiful and Payton is super cute too! I've been reading a lot the past couple of days about "The Poll." I haven't seen her blog personally, but it breaks my heart. I too remember the mind-blowing devastation we felt the day we had our ultrasound. How could there be anything wrong? We had 3 other perfect, beautiful, healthy children. We just wanted to know if it was a boy or a girl.
    But WOW! Who knew how amazing the last 3 years would be! What a total BLESSING our son is to us and to anyone who meets him! Some of it has been tough, especially that first year, but the good has far out-weighed the bad. Brendan has completely surpassed every horrible prediction we were given before birth. Today he is a happy, funny, intelligent, sweet, motorcycle-loving, crazy kid who will melt your heart with a smile!
    I look forward to following your blog and celebrating Emma's progress! Maybe we will even get a chance to meet. We will also be at the Walk-n-Roll. You can check out Brendan's blog at
    ~ Stephanie :)
    PS. Which SB online group do you follow?

  4. I've never heard that story before but it's amazing! It made me cry! I had a baby 4 months ago and my boyfriend and I decided early in my pregnancy NO MATTER WHAT we would have this child. Irelyn was born healthy but she had been any other way we would have loved her the same. My boyfriend works with special ed kids and every one of them is full of life, love and laughter. What is more rewarding to a mother than these? My sister was told TWICE that her children would be born with difficulties...both times Dr's were wrong and both her children are healthy. Only God knows how his (our) children will be born and only God knows who can BEST love a child who needs a little extra. You are an inspiration...not because you have a child with SB, but because you are a mother who loves deeply and wholely!