"Perspective Changes Everything"

Posted by: Leandra

"Perspective Changes Everything" - 04/22/07 08:24 AM

I drove around for some time with that quote plastered onto my car by way of a bumper sticker that after a great several years eventually succumbed to the elements. :-) In reading some of the recent heated posts I thought I would share some of my personal experience in case it is at all useful to anyone. If not, please simply disregard as it is not at all my intent to resume the direction of closed threads.

Almost 13 years ago my husband and I had our first child, Lindsay. When Lindsay was 3 years old, I discovered there was actually a name for the strange progressive muscle weakness I and some of my family members have always had...Facioscapulohumeral Muscular Dystrophy. At that time I also learned that Lindsay had the disease and that, as it is a highly variable autosomal dominant disease, I have (and she has) a 50% chance of passing it on to children with unknown degrees of severity. Somewhat alarmed, I learned to quell some of my personal worry by educating myself and family as much as seemed appropriate. I spent much of my time in research and involving myself in support groups and conferences related to FSH MD. While I was sidetracked with FSH MD involvement, we experienced a life-threatening encounter when Lindsay was 8 as she was hospitalized with Type 1 (Juvenile) Diabetes, a disease that is also highly associated with genetic predisposition. I had worked in health care for many years but never knew anything about the symptoms, and it might well have been an ongoing research mentality and personal need to stifle worry with information that helped discover the problem before Lindsay was rendered comatose. Since that time, I have been very actively involved in both FSH MD and Type 1 Diabetes groups, and I thought it perhaps useful to mention here that the topic of whether or not to have children has historically remained an extremely charged one in both communities. I should also share that after all the embers settle, the take-home message has invariably remained in both forums that there really doesn't seem to be a right or wrong answer as it appears to present as a very personal decision based on differing perspectives, experiences and the unique individualism of each person. My experiences with these forums has challenged my perspective with the notion that we are all perhaps the sum total of our differing experiences that are collectively buffered against our differing natures. It is perhaps these unique items that help each person in our world make decisions about ALL kinds of things.

When seeking one's own personal answers based on one's own unique experiences and personality with regard to the topic of procreation, I wonder if maybe it might make sense to seek a neutral entity equipped with both the appropriate genetic and medical information as well as the training to assist individuals as they personally rate different types of challenges against their own uniquenesses. Consulting with a genetic counselor could possibly make sense in terms of coming to the best personal conclusion as opposed to attempting to effectively debate private individualism.

As for me, I will share that after imposing our personal ratings on risk and probability in our private situation, my husband and I chose to try to have another child with the knowledge that there would be a 50% chance of passing on the FSH MD gene again as well as a chance of passing on susceptibility for developing Type 1 diabetes. For the record we also knew that the chances of Downs Syndrome was higher due to my age, that the chances of poor eyesight was greater, and that there were reasonable risks of allergies including severe asthma. I'm certain there were many other "significant" (quotes here based on individual perspective) hereditary risks as well. While we still have yet to learn whether or not our almost 2-year-old, Natalie, has any of those other ailments, we have so far learned to add ichthyosis of an as yet unknown type to the list. Again, I have found myself grateful to be able to come to a forum where I can work on squelching worry as I arm myself with information and support.

For my family those things that some unique individuals with unique experiences may perceive as dis-ease are actually challenges from which we have personally and surprisingly derived great strength. From our unique perspective, we have personally landed in a place where we have managed to feel more greatly enriched than had we never been presented with our unique challenges. Given our personal responses to our unique experiences, we have come to perceive that most everyone is challenged with something at some point whether or not there exists a scientific name for it. I wonder if it is what we each uniquely and individually choose to do with these challenges (which may be perceived by some natures and experiences as value and by others as malediction) that propels us uniquely into our differing directions where we each are allowed to individually define and rate that which we ultimately find valuable and meaningful as we grow and evolve.

Despite our amazing uniqueness as individuals, perhaps we all share a common notion other than ichthyosis...we are all different. Our challenges and our associated perceptions of them are unique to each of us. What makes the most sense for my family and me appears to be as uniquely or even more different as our differing ichthyoses and the many ways of treating them. I can only hope to remain mindful that I don't know much of anything about the experiences and uniqueness of other folks, and, as such, try to continue the offerings of support and comfort upon which this valuable forum was founded.

Hugs and gratitude,

[This message has been edited by Leandra (edited April 22, 2007).]
Posted by: jds

Re: "Perspective Changes Everything" - 04/23/07 12:52 AM

Very well said. Thank you for your insight.

Tammy (caregiver)
1 year old son- lamellar ichthyosis
Posted by: threerxli

Re: "Perspective Changes Everything" - 04/23/07 04:17 PM

That was very well written. It was everything I wish I could have said, had I not lost all composure. I have been in "fight Mode" for several years now, and it is still difficult for me to take a "timeout/reflection time" before posting.
Thank You!