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!

Sunday, October 17, 2010

I think I’m going to go there…

I think everyone in our blogging SB-mom community has been touched by the struggles of another mother. This mother who posted a poll on her blog asking strangers to weigh in on her options of what to do with her unborn child who was diagnosed with spina bifida. To participate in the MOMS study, to continue with the pregnancy and not participate, or to terminate.

I read her blog that lead up to the poll. I read how she presented the choices. I also read her post on our baby center website and the hurt and hardness that ensued. I can see how insulting it was to a mother with children with spina bifida, asking the public if their children should not have been born. I can so easily see and feel those strong and passionate emotions, I felt them too.

In fact, yesterday I wrote a whole letter addressed to this person about how she chose to present her nightmare of trying to choose the right path for her family, her unborn child and herself. I felt that she completely presented spina bifida in a negative light, without paying attention to the joyful experiences and lives of spina bifida. I read some of the responses on the BabyCenter site, I read fellow mothers on facebook and how upset they were, I read other mothers blogs and how upset they were. Like I said this is something that has profoundly impacted our blogging-internet community.

I talked to my husband and my sister about this poll. They could understand where she was coming from. How she was looking for anything, anybody who could tell her what to do. Because she was so lost. They reminded me that I had been where she is right now. And that got me thinking…

Here is the tricky part.

Then I read her other post. The post in which she explained why she posted the poll. The despair she felt in reaching out to other mothers about their choices and how she felt she was battered down when she tried to be honest. Her post actually made me delete my message and send her one on an entirely different level.

I do not condone the poll. What I can do is empathize with a woman who is so lost, so unsure that she used the internet to try to get answers. This is something that I use every day. The problem with the internet, blog postings, forums and emails is that it is so easy to offend someone. To post something that in your head you mean one thing, and when someone reads it, it means another.

She came seeking hope and support and then things went horribly wrong. I will blame the internet because I cannot believe that someone would so obviously insult us. Let me also say that I empathize (even more so) with all of the mothers who are so profoundly hurt by the entire situation. Who could not sleep and felt that they had to defend the lives of their glorious children. I can empathize because that is me as well! I read the blogs in response to the situation and marvelled at the children we have and the obstacles that have been overcome and the worry that spina bifida is seen in such a bad, negative light. In contrast to our awareness campaign to REDEFINE SPINA BIFIDA. This situation seems to spit in the face of that whole way of thinking and celebration of spina bifida in the month of October. But I do not think that this is what was meant.

Maybe it is my training as a nurse, as a person who sees individuals in the worst part of their lives, and offer comfort and empathy as well as medical care. To care for the soul and the body at the same time.

She did respond to my email, something that I am profoundly glad.

She discussed what makes her so scared about having a child with spina bifida. She told me about people she had talked about who had lived with spina bifida, in siblings, and parents. The things that they told her shocked me to my core. I think I might have had a horrible time making a decision if I was told, by people in person. A sister of someone with spina bifida who experienced depression as well as witnessed her parents go through many trials ‘She was a joy and a happy little child living with a disability. That happiness and joy has faded over the years to depression and personal grief at all her life is missing’. That horrifies me. Even worse, this sister says that she”went from getting love to not.” She also received a message from a friend whose mother had spina bifida (occulta?) and all the hurt she saw her mother go through. She was told by someone who lived with spina bifida ‘Whatever you decide you’ll hurt… but you’ll hurt more if you have to cope with the significant needs for 20-30 or more years.’

That statement horrifies me as well. But not as a parent who could be facing that. I don’t believe that I am facing what someone 30 years or more faced. What horrifies me, is that this person loved someone with spina bifida and is actually saying this.

I am not sure if I could have been strong enough to continue with a pregnancy if I had received those remarks. I am profoundly thankful that I did find the strength to continue and I am confident that I made the right choice. But it was a choice.

I did consider termination. Since you obviously know what choice we made, it is not obvious the turmoil that we went through in the 2 weeks in which Kyle and I struggled to make a decision that would impact us for the rest of our lives.

I will bring you to those weeks in July. I have discussed when we got our diagnosis, the negativity that was involved in the views of the doctor that gave us our diagnosis.
It is not very often that you face that type of decision. One in which you know that nothing will ever be the same again, and none of the choices are what you had ever even imagined that you would face. I did not want any of the choices. It was so unclear; life became unfocused, dark and despairing. I wanted information; I wanted someone to tell me what was going to happen, what I was looking for. I was looking for any kind of answer!

And it wasn’t only about me; it was about this child, Katheryn and Kyle. It was about bringing a life into the world that would only know pain, only know injustice and despair. It was needing to let go of the idea of perfection that I had in my head and redefine it forever. Or, even as unimaginable, to take the almost easier way out. Stop the life that was inside of me. Deliver a 22 week baby that I had killed. And live with that decision.
The first night, those were my choices. Pain and suffering for a child to live. Or pain and suffering, but a potential for the easy future I had dreamed about. But never knowing about the potential, always having that unknown child in my life but knowing it wasn’t because of a decision.

Having a choice, having a decision was tearing me apart. First it tore me one way, then the other way. We were told of mobility problems, brain and neurological problems, intelligence problems, learning disorders, bladder and bowel difficulties. All of these scary things that you cannot even imagine having a child and baby go through.

That was where I was. Wanting someone to tell me what to do. Give me an answer.

That is why I can empathize with this woman. That is why I can so easily imagine the horror that is going through her head, over and over and over again. We got a lot of information and obviously decided to continue with the pregnancy. Once the decision was made, together, the screen lifted, the fog went away. Light shined on us again and we could smile and be happy. Once the decision was made.

I hope that this post didn’t insult any of my wonderful mothers. My purpose in writing this was not to insult or explain or excuse any of the strong emotions that were involved. My emotions were running very high as well.

What I want to do, why I wrote this, is to provide comfort to my SB-mommies that were so hurt by this situation. I know that you will find comfort in the arms of your children tonight, those with spina bifida and those without. I only hope that this mother will find similar comfort as well.

It is a horrible, indescribably choice to be handed. Not everyone is as strong as we are. I hope you take comfort in that as well.


  1. I too know those feelings of fear on either side - and that is why I was so heartbroken by how the whole thing went down. I felt like so many of our SB mommies tried to give her hope - and when that hope is not met with a positive response it is personally hard to digest. Someone recently asked me if I'd ever tried to explain something so important to someone...and they just didn't get it? Yes. Yes. And it is so incredibly difficult with life and death are involved - life and death for a little one just like my baby boy. I can't stand it. I'm still praying. And I thank all the mommies who are posting and talking trying to find and give comfort to one another- we are a wonderful family and I am so blessed to be a part of it.

  2. I think it is good to know what she was thinking. The things she was told from family members of spina bifida people really got me thinking - I actually blogged about it! (http://www.ruths-story.com/2010/10/18/happiness/) Thanks for posting this.