Spina Bifida Diagnosis: What I wish I knew

Now that my child is seven years old, I can reflect on the dreadful days/weeks/months after receiving the news without tears in my eyes. We received Camden’s diagnosis at 19 weeks gestation, and I remained on bedrest for the remainder of my pregnancy due to a compromised cervix. I spent nearly 5 months depressed, angry, and sad. The things that I know now I am sure would have spared me the suffering that I endured then, I am sure.

I wish I had known to use resources including friends, family, social media groups, providers, and The Spina Bifida Association of Iowa. I felt alone and depressed. I felt that no one could understand that I was mourning the loss of my “normal” child and I felt guilty and helpless. I wish that I would have had someone tell me that they had been where I was and that things would be okay. I wish that I would have had someone to give me advice that medical experts could not.

I wish that I knew that things would be different, but fine. Looking back at my fear, anger, and sadness, I would have told myself that different is not bad. Different can be empowering. I would have told myself that being an advocate is difficult but worth it.

Today, I can appreciate how far I have come as a wife, mother, and advocate for my little boy. I can appreciate how hard I have worked with faith, love, and by surrounding myself in relationships with those that can/have walked in my shoes.

I have been in your shoes. I am here as a cheerleader, listener, and advocate.