Friday, April 1, 2011

I wish I could express....

I belong to a forum called 'Spina Bifida Connection' that is comprised of parents of little ones with spina bifida, as well as teens and adults with spina bifida themselves.  It is a great support group where you can talk about anything you need to and get answers to any question need help with.  Many times moms who have just been told their baby has spina bifida come on for support.  It is the same story over and over again.  The doctors gave them a bleak outlook and are telling them they should abort, but they want to get more information first.  The crazy thing is, when I hear the specifics on their child, many times the level of their spina bifida and/or form is better than Madis.  Bleak.  Life is not bleak.  Look at Madi's life.  Does that look bleak to you? 

Today another mom posted that she cannot put her child through such a sad life and that she has decided to abort.  I am in tears, and I never cry.  It saddens me that the life of a child with a disability is not seen as valuable and worthy of life.  It saddens me that people look at Madi and feel bad for her.  It saddens me that people think that a baby with her condition should not be given life.  It saddens me that people see it as bleak and painful, and therefore, unworthy.  Yes, life is different, but who are we to judge that it is any less amazing or worthy? 

This is a great reminder of exactly why I keep this blog.  To bring hope.  Spina bifida may not be something we plan or wish for our kids.  Spina bifida may bring challenges, I am not going to lie, but spina bifida also brings love, hope, laughter, determination, and so much more.  Spina bifida brings life.



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10 comments:

  1. AnonymousApril 1, 2011 at 1:10 PM

    That's incredibly sad for that family. Wishing they could see the hope that lies ahead if they were able to hold out. ((HUGS))

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  2. CassieApril 1, 2011 at 2:00 PM

    What is so frustrating is that this mom could just take a few minutes to browse through the dozens and dozens of blogs and see how amazing, blessed, beautiful, and perfect our kids are. None of these blogs were around when I was pregnant, I would have LOVED to have seen a precious child like Madi when I was pregnant with Caleb. It would have calmed so many of my fears. It's a real shame that her baby will never be given the chance at life. It is a terrible terrible shame.

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  3. ElizabethApril 1, 2011 at 3:40 PM

    It breaks my heart. I'll remember his family in my prayers.

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  4. JamieApril 1, 2011 at 4:13 PM

    I did a long post to her, and asked her to read our blogs, but IDK if she did :(

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  5. Chuck and HeatherApril 1, 2011 at 5:24 PM

    I hate hearing stories like that. There is no way that mother could have looked at these blogs with such beautiful children who are doing SO well and still make that decision. Breaks my heart. ):

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  6. JoannaApril 1, 2011 at 6:16 PM

    Ugh. Stories like this are like a punch in the stomach. I would be utterly devastated if something happened to my Jet. It's hard to breathe just thinking about losing him - and can you imagine if someone decided to end his life because it was "too difficult" for him?? It sounds absurd rightt?! I am heartbroken over stories like this and pray that something or someone can get into their mind and heart and change things. Praying for a miracle. :(

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  7. ainemcApril 2, 2011 at 3:33 AM

    Heartbreaking :(

    There should be some kind of law were these doctor's are forced to give facts on sb babies and not their far fetched untrue poor prognosis.

    I also wrote to her. Hoping she changes her mind. It's so sad.

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  8. krousehouseApril 2, 2011 at 6:56 AM

    I dont visit SB Connection often just because of time constraints. But I am so glad I didn't read this woman's post. It makes me sick just knowing it's out there. I look at Madi and my own Charlie and think, life is beautiful and so worth it.

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  9. MeilaniApril 2, 2011 at 6:38 PM

    I want to cry too just thinking about it. People get so caught up in the imperfections of these children that they miss the wonderful and the beautiful blessings that come with them. All we can do is be positive voices and hope to make a difference.

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  10. acmcginnisApril 4, 2011 at 7:16 AM

    I cried too! I was sitting here in this hospital room looking up at my little girl in her bed, thinking...I can't imagine aborting this little baby of mine. She may have SB, but is the most amazing thing already-regardless of a disability. This was a great post and spoke straight to my heart! Let's just pray the doctors can start telling the truth about SB to new moms and quit scaring them to death.

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