WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Sunday, January 8, 2012

Hope

We having been patiently waiting for Abby to "bounce" again. She did slowly bounce once she made it through the toddler years. Now since we are well past puberty we are still hoping for the "bounce."


Some mornings when I wake up, I have all the hope in the world! Or the days she has a sparkle to her eye, or what I recognize as a high energy grin, or you can just tell by the way she putters around that her engine is revving!

Other days, when she is dragging, when her stomach is miserable and she wanders out to say good morning on wobbly legs,grabbing the counters to balance or rest on her way out, I just want to cry. The doubts roll in, and I hate to face it, but the fact is, she has slowly faded bit by bit over the last couple years.


Is it realistic of me to hope for another bounce at this point? Or maybe I should be preparing to change my direction and focus more on treatment to slow the progression instead of treatment to get her to bounce..


Fact is, a great big part of me REFUSES to accept this diagnosis. In the world of Mito since there are so many variables, there is plenty of wiggle room for denial. I accept they found the Depletion and I "get" the problems that causes, but I don't accept it yet, can't be a primary issue, I keep leaning toward that this is a secondary issue. My "Hope" is entangled in the concept that despite the huge strides in the study of Mitochondrial Disease they have so much to learn still. My mind is constantly trying to connect the kitchen sink to Abby's diagnosis, I keep replaying over and over the steps we took when she got better the first time as a toddler, I know we have taken those steps plus many more yet, I still feel her sliding down the cliff.. I curse my lack of science education, I am so frustrated that I simply do not have ability to make the intellectual jumps to change my "gut" feelings into scientific based theories. I want to steal the mind of a great Dr. for just a few months, maybe it wouldn't lead me to a cure, but at least it would allow me to feel like I truly understand the science and would relieve some part of my frustation.


In the last couple months I have found a lot of Mito families to chat with- it is a joy and at the same time awakens a lot of uncertainties. As I learn their stories and about their Mito journey, I also learn exactly how bad things could get. Every once in awhile I hear about a child making a bounce and I gain my hope again. Sadly, I have heard far fewer stories of "bounce" and a lot more of decline.

I guess part of our issue is the way that Abby declines. No trips to the ER, no major scary episodes that clearly label it as "decline" or "involvement".. more a slow and gentle fading.. It is like something is stealing her vibrance bit by bit, and at times she becomes just a ghost of who she was.. There is simply nothing that any Dr. could fix- there is no cure for "fading out."

As I am sitting here, I hear her giggling somewhere in the house, and today is not a good day for her- and Hope has flared once more.

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