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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Monday, October 1, 2012

If I Had Known Then What I Know Now...

When we first found out Madi had spina bifida, we worried and stressed a lot.  I cannot even tell you how many tears I cried.  I didn't understand spina bifida, and the doctors were only telling me worst-case scenarios, forgetting to tell me that first and foremost, we were having a baby.  A beautiful, perfect, and amazing baby that would bring more joy and love to our lives than we ever imagined possible.  If I had known then what I know now, I would have saved that heartache and tears and I would have focused on enjoying every second of my pregnancy.

This is a theme you hear a lot in the spina bifida community, and that is, "If I had known then what I know now...".  In honor of spina bifida month, I want to share with you what other moms, dads, and individuals with spina bifida themselves had to say in answer to the phrase, "If I had known then what I know now....".  If you are a parent receiving your child's diagnosis, I pray these words will help you through this time, giving you hope, direction, and focus.  If you have spina bifida yourself, I hope these words will give you strength, encouragement, and direction too.


If I had known then what I know now...
 
 
  • I would not have worried about the what ifs....and enjoyed the right nows!
  • I would have never googgled sb or anything that goes with it and enjoyed my pregnancy to the fullest!
  • If I had known then what I know now I would not have let sb make me so nervous and stressed out. I knew how much I loved being a Mom and that should have been my focus. I would have researched about therapies, playgrounds and activities for children with special needs rather than researched sb itself. The information on the Internet is scary and leaves little to no hope. What I did know was I had no control, God was in charge the whole time and was blessed with a beautiful gift from Him.
  • I would have talked to an experienced parent and not retreated into a shell. I thought that meeting other parents with children would make me more stressed, but has actually put my mind more at ease.
  • If I had known then what I know now I would have put my foot down for pointless tests, Dr. appts., and treatments. I would have demanded caring and kind nurses and Dr's instead of allowing them to add to my stress and worry when my son was little or for dismissing my fears and concerns or my sons cries of fear and pain. Although it didn't happen often, it did happen and I wish I would have been the assertive, outspoken person I am now. I would have been more focused on him and not on the goals. He is a beautiful, vibrant, intelligent child ( and always has been) and I have finally learned to relax and enjoy every second because I know now, I can't fix everything ;-)
  • I would have been unable to hide the smiles in anticipation of holding my baby boy, SB and all :)
  • I would of stressed less and let God work...I would of probably been more open about talking with others not many knew about Nevaeh having SB until she was 1 1/2
  • I would have been WAY less afraid of her needing a shunt. She got one placed at 4 months after the neuro decided it was time, and it seemed to really help her. The revisions I was so worried about also turned out to be no biggie. She needed 1 at 9 months and 48 hours later you couldn't even tell she just had brain surgery (except for the bald patch lol). I took a video about 12 hours after she woke up and she was herself right away. http://www.youtube.com/watch?v=sX6ClDkameA&feature=plcp
  • I would have been more willing to share my weaknesses with others and asked for help instead of trying to live up to the "superwoman" image that others placed on me because I refused to be transparent about my fears.
  • I would have loved myself sooner. I would have accepted the pint-sized, limpy, goofy, tye-dyed leg brace wearing, funny, awkward girl that God made me to be, way sooner than I did. I wouldn't have worried so much what people thought of me. I like me. Who knew? I'm kinda neat!
  • Would have valued myself more and let myself know that I was a good person.
  •  If I had known then what I know now I would have respected and appreciated my body more. I hated my body growing up. Poor self-image and a lot of self-hatred. I now love myself and feel worthy of love. I never felt that way growing up. I couldn't give a flying whoop what people think of me now and if I want to go swimming and show off my scarred legs, I'm gonna do it. I'm not gonna let a bunch of strangers and self-doubt stop me. :)
  • If I knew then what I know now.... I wouldn't have spent so much of my childhood ashamed and trying to hide the fact that I had sb and was "different" from other kids. I would have fully embraced it and instead of hiding, would have educated. I would have been honest with my friends and instead of telling them I had to go to the nurse every few hours for "kidney meds", I would have told them the truth about having to cath. I would have listened to my docs when they told me how serious an infected ulcer on my foot was. I would have agreed to the amputation years ago instead of waiting until the infection was so bad it almost killed me. Most importantly, I would have made more of an effort to meet other people with sb so I didn't spend 30+ years feeling like I was the only one who would ever understand what I was going through. lol I guess that's why they say hindsight is 20/20.
  •  I would not have cared what everyone else thought.
  • Had an easier time in school, and probably gone on to be a veterinarian like i wanted to when i was younger.
  • I would not have stressed so much during my pregnancy and looked for a support group sooner than I did. I thought we were the only people around with a child with SB and that is not the case at all. Also, I would not have googled neuro tube defects when that is what the OB said my daughter had before I went to see a MFM. It was very scary to read about those and think that the baby I was carrying fell into one of those categories but I knew I was going to keep her no matter what.
  • I wish I could have seen a baby with Spina Bifida, my pregnancy would have been so much better. Just knowing that Ciarlo is just a baby who happens to have Spina Bifida
  • I would have... Not stressed so much I would have treated him like a typical baby!!!! Because he is
  • I would have been less shy,more outspoken, less fearing,more responsible and independent.

4 comments:

Tracy Jensen said...

awesome!!! Thank you for posting this...it's fabulous!

Mama Meerkat said...

This is wonderful! :)

I'm doing a series of informational posts on my blog for spina bifida awareness month to help spread awareness and information.

growingfromtheobstacles said...

Love it!!!

Anonymous said...

...You did help...

My daughter..who turns 7 months today..also has SB..& only close family & very few select friends know..

I have been contemplating wether I should write one of those notes on Facebook to finally let the world know about my daughter. & I know, why Facebook? Well, that's where I communicate with people I don't see often.& it just feels right.

Part of me is scared. Will they judge? Will they give me pity? Will they be mean?

But I can't..shouldn't be worried about that.

This is for me..for her..for my family.
Reading this has given me a little more courage to do it. So thank you. :)