Saturday, May 5, 2012

You never know how strong you are, until being strong is the only choice you have.

Don’t let what confines you define you.  Do not be limited by what you see or discouraged by what you do not see. This has been my constant mantra for eleven years. 

When Mighty Z was born it was very hard to not limit her because of what I saw looking into her hospital crib. Even after the doctors told me there was no hope for my Mighty Z I had a hard time not confining her.

It took me time to grieve for the healthy child I thought I had and to celebrate the child I was given. It is important for me to say that I was not horrified by the child I was given, I was just felt so ill equipped to handle such a medically fragile child.

At the time I felt so isolated and yes confined at having such a responsibility. It took me years to find people like me, to feel like I was not alone in all the feelings that flashed through my mind. The what if's and at times the hope that was not there.The pain that never never goes away.

After I had time to catch my breath and look around. I began to see the perfect angle God had given me. How that God had never left infact  HE was the one caring me through this.I began to stand on my own feet and not let what confines me define me., and to never limit Mighty Z by what I saw. 

I learned to never give up! To call things that be not as though they are (Romans 4:17) No matter what the circumstances, God has an answer and He will show you the plan when you seek Him (Jer. 33:3).

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Tuesday, May 1, 2012

pushing the envelope

Almost 2 years ago the French stumbled upon a drug that could theoretically help Mighty Z's disease. Some think it could be a cure.

I don't feel that I will throw Mighty Z's ventilator in the trash (although the thought sounds fantastic and scary at the same time).I do feel the drug could help Mighty Z during the day.

 Most CCHSers (Congenital Central Hypoventilation Syndrome)  only breathe 15 breaths per minute, I know for a fact that Mighty Z only breaths 15. If this drug could raise her respiratory rate 10-15 points higher imagine how her daily life could change.

The drug is Desogestrel a birth control pill. In the study that I have read it talks about a 19 year old and a 30 year old both women who have CCHS (Congenital Central Hypoventilation Syndrome) took desogestrel both  patients  reported respiratory sensations and marked anxiety over breathing that they had never experienced before.

When Mighty Z turned 3-years-old, a life-changing option was dropped in my lap. I had heard about diaphragm pacers, which are surgically implanted and make the body breathe seemingly on its own. But, the decision to have her undergo a dangerous and experimental surgery was a difficult one for me. It was dangerous, but I stood up to the fear.  I was trying to make her as normal a child as I could, to give her a normal childhood,It would’ve been a lot easier and a lot safer to keep Mighty Z on her machines. But I had to let her have a chance.”

Now Mighty Z is 11, and another life-changing option has dropped into my lap. She will be the youngest in the world with her disease to take desogestrel. Yes the old fear is back, the what if's and the knowing disappointment if it doesn't work.

Why do I keep pushing the envelope when it comes to Mighty Z's treatment? Maybe it’s because my daughter lives on the verge of dying with each breathless moment and yet doesn’t seem to have an ounce of quit in her. 

And I will continue to fight for her potential, because that’s what parents do for their children.

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