Don't Tell Her That!

Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.

Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."

Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.

Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.

I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.

Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.

During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?

We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."

Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.

She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.

As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.

I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!