Saturday, February 25, 2012

There is No Secret Ingredient

B loves Kung Fu Panda. So very much so, that the reason she got dumplings for Thanksgiving (pear dumplings) was due to her obsession with this movie. I love my girl. . .

After watching that movie for likely the fiftieth time tonight (Friday is movie night), the phrase "There is no secret ingredient," kind of stuck with me. And I thought about our kids, and us as families, dealing with FPIES everyday. My thoughts settled on "hope."

I have been rather disturbed to read some posts on a few of the support forums lately. I have seen other FPIES parents, a handful in particular that are very active in the community, publicly discrediting (and I do not use that term loosely) other FPIES parents. This disturbs me on a few levels--- first, I think "Who has time to do this?" Second, the pragmatic part of me wonders how on EARTH this is remotely helpful or useful to anyone. We have kids with a chronic illness. This is a shared reality for all of us. I know personally, when I frequent the boards, it is specifically to reach out to others, maybe help someone through a situation we experienced when B was younger, etc. I don't like or have time for drama. If what one wants to say is counteractive to the supportive nature of "support" forums, and one indeed has the time to conjure up such nastiness, I may suggest that time would be better spent perhaps by reading one's child a book. Madeline is a current favorite around here, if suggestions are needed.

The issue that bothers me most is that as parents of children with a rare, often misunderstood diagnosis, we are sometimes slammed by others, including some family and even medical professionals, in how we go about the care of our children. Obviously, there are amazing supportive and educated docs (we are very lucky to have B see some of the best!) and amazing supportive family and friends. But the nature of dealing with a rare and misunderstood diagnosis can lend itself to outside criticism and doubt, particularly when going through the initial diagnostic process. Our FPIES community is meant to be a safe place, a place free of those criticisms. And we of all people, should know that the intricacies of each child's case may be confounding and may not be "by the book." Statistics break down at the individual level, and if all of our kids were textbook in all of their symptoms, I would think that outcomes for all may fare a bit better than they currently do.

So what can the rest of us offer in these situations? What can be used to counteract this poor behavior? We can hope. Hope is the most powerful device we have-- it is what gets us through the medical testing, the endless doctor appointments, the food trials, the day to day questioning, and those awful nights that we all know too well. It is hope that we can offer our children as they deal with the most challenging aspects of this condition. The truth is this: we don't have a special medicine, we don't have a magic bullet (outside the realm of small kitchen appliances), we don't have a secret ingredient. We DO have the strength and the compassion that we can offer to one another, elements that come from navigating our own sometimes dark circumstances, elements found within the very essence of hope itself. With hope, we find each other and we find ourselves. With hope, we somehow find a purpose in all of this. With hope, we discover that although the road is often rocky and the path can be dark, normalcy, comfort and solace can and will be uncovered and nurtured through our strength and solidarity as a community. For the negativity that does exist, sadly even in our own backyards it seems, we cannot allow it to strip us of hope, but instead, we must stand up against this negativity with our continued dedication to one another's families and our continued fight for our children's cause. It is with hope and only with hope that these ideals we hold most dear are truly possible. I commend and applaud all of you parents and professionals that do this everyday.

1 comment:

  1. You remain my strongest Momma inspiration!! Baby B is so fortunate to have such an amazing, wise, and strong momma!! And I am proud to call you my dear FPIES found friend. FPIES may be ugly but this community of friends and family it has brought has been amazing!