A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, September 24, 2010

A gift of spina bifida

It is easy to focus on what I am missing by having a son with spina bifida. (This is a followup to my last post - A Moment of Grief) When talking about 'a different kind of perfect' I might think and imagine what I am missing, how things are worse now that we have spina bifida in our lives. Concentrate on the worry, the appointments, and the hardships.

But thanks to a friend, fellow mother and blogger Joanna for reminding me that there are things that I have gained by having spina bifida in my life. I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about our diagnosis, but it really isn't.

It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.

Spina bifida has brought me clarity.
It reminds me of when I first got my glasses. I commented to my mother that Now I could see the leaves on the trees when we were driving. I never knew before that I couldn’t see the leaves; I didn't know I was missing anything. But now that I had seen I didn't want to go back to the blurriness.
Having a child with spina bifida has given me glasses that I never knew I needed. It has opened up a life for me that I don't want to give up.

It has given me the clarity, time and opportunity to enjoy and marvel at little things (even during physio). To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments.

It has given me a voice to ask questions and seek current research. It has made (ok maybe I'm not quite there yet), I should say, it is making me into an advocate. Confident that I am a strong mother who has good instincts.

It has given me the gift to realize the strength of my partnership. That we have been to the bottom of the pit and have risen higher than we realized that we could. That we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture.

It has brought me a gift of a family of mothers and their children that understand exactly where I am and what I am thinking. It has given me children that I have followed and will follow being born, growing older, rolling, standing, walking and running. I have found a whole community of people who have been there, and share their experiences to help you when you feel alone.

Let me finally say that it has given me to opportunity to realize how wonderful, loving and caring my family is. Who read about my moment of grief and reached out to see how I was. To reinforce their love and confidence in my ability to be a mother of a son with spina bifida.

So today I celebrate the gift of spina bifida. That I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings.

OK hand me a tissue.


  1. Beautifully expressed. :) I love how you followed up with this post - such a perfect balance of what we are all feeling and go through. And those pictures of Nickolas are SO sweet! Love it!

  2. I ditto Joanna comment.

    This post is wonderful!

  3. What a wonderful gift he is! Have a wonderful weekend with your family.

  4. Hi Amanda
    What a beautiful story. I am a mom of a spina bifida little girl. I read Nickolas' story page... it was like I am reading about my story. Doctors tried to convince us to abort. My daughter is turning 6 in November.

    It is challenging at times. But there are more happy days than challenging though. She is an absolute angel, still in diapers but I dont regret not aborting.

    Thanks for such a lovely blog.

  5. I couldn't agree more! I am so thankful that thru this I have met so many amazing mommies & babies :) Your son is beautiful and perfect! He is going to accomplish so much and will have his family there to support him thru it all!

    Much love,
    Lysette & Lyla

  6. Oh, pass that box of tissues over here!! :)

  7. :) The glasses are a very great way of explaining what we realize when its all said and done. Love it.
    Jenn (LillyPie)

  8. I have a daughter with spina bifida and she is 21months old. Your story and your blog on the gift of spina bifida just touched my heart, you are so right we find so much joy in our little girl. She is our blessing even through all the pain and heartache there is true happiness.