Tuesday, October 2, 2012

Spina Bifida Awareness Day 2-Madi's Story

Dear Life,

This awareness month is so inspiring to me.  My friend Jamie is sharing  Madi's story today...

"My daughter, Madi, is a smart, funny, spunky, life-loving, and adorable three-year-old. 
 Her story goes back to when I was 22 weeks along in my pregnancy.  I had planned to have a homebirth and was seeing a midwife, but my husband and I wanted to know if we were expecting a boy or a girl.  We went in for an ultrasound and found out we were, indeed, having a girl.  We were over-the-moon excited!  The ultrasound tech said that she found some abnormalities, but informed us that the doctor was not there to talk to us and that she would have him call us the following day.  My mom started to worry, but I just blew it off.  It is very common to find abnormalities in level one ultrasounds, so I thought nothing of it.  The next day the doctor called and apologized for not being there the day before.  He then, again, told me they found some abnormalities during the ultrasound.  He started spouting things off like "she has no corpus callosum (she does, it is just underdeveloped, so they couldn't find it", "lemon-sign", "fluid on the brain" and a bunch of other very scary terms that we knew nothing about.  I tried to ask him what it all meant, but he wouldn't tell me anything.  He said I would need to go in for a level II ultrasound.  I called the office we were referred to and the earliest appointment they had open was about a month away.  I was devastated.  I couldn't understand how they expected us to go a month without knowing what was going on.  I called my midwife and told her the news.  When she heard about how far away the appointment was, she told me she would get us in sooner, and she did.  About a week later we were on our way for our level II ultrasound. By then I had already spent endless hours googling and had determined Madi had spina bifida.  I wasn't exactly sure what it meant, but I knew that is what was going on.  Sure enough, the doctor at the level II appointment confirmed that Madi had spina bifida.  He gave us his worst-case-scenario speech, told us Madi would never walk, and asked us if we wanted to know our options (ie- did we want to terminate). 
When we heard Madi's diagnosis, we were afraid.  We had never met anyone that had spina bifida and we had no idea what it meant for her.  I was so afraid that something would happen and I would never hold her in my arms.  I remember praying and telling God that I could deal with anything He sent my way, but that I wanted her to have a long life, that was full of life and love.  

We started to plan for Madi's arrival.  We met with the neonatologist, neurosurgeon, toured the NICU, wrote a birth and care plan, and talked with parents who had children with 
spina bifida.  It was a very stressful time, with very little answers, but preparing helped us keep busy and feel more ready.  I was induced at 37 weeks and Madi made her grand appearance.  She was so beautiful and we instantly fell heads-over-heels in love.  

If I could change anything about our journey, I would go back and enjoy my pregnancy.  I wouldn't have spent my time worrying about the unknown and I would have saved my tears.  Life may look different than I once envisioned, but that doesn't make it any less amazing.  When I look at Madi, I don't see her disability.
 I don't see her leg braces or her wheelchair. I just see her adorable face and her radiant smile. Yes, Madi has spina bifida, but it is just one small part of who she is. 
She finds a way to do anything she puts her mind to. She never gives up and lives each day full of joy.

Our family is now on a new journey to bring home a little girl home from India that also has spina bifida.  Ramya is 5 and has been in an orphanage all of her life. We are no longer afraid of spina bifida and feel that the knowledge and experience we have can help give Ramya the support she needs to thrive.  We hope to have Ramya home by Christmas and are looking forward to having two little sweeties zooming circles around us!  If you would like to read more about our journey, please visit our family blog at www.aworthyjourney.com."


  1. Hi, I am a church service missionary in Disability Services. We found your blog and we would like to contact you, but you have no contact info that I can find. Could you email me at suzanne.smith@ldschurch.org.
    I also have a daughter w/Ds. Our personal blog in www.lilyslifeisgreat.com.

    Sister Smith

  2. Sweet, sweet Madi!! So precious!


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