Monday, April 12, 2010

I Guess People Assume I'm "Crazy"

Okay, I realize that some people out there are going to tell me to "get a sense of humor" and "don't take things so personally" and in all honesty, I'm not really hurt or upset, but I am at least a little appalled at the level of ignorance being demonstrated on a so-called "mom" website.  Momlogic, who I just started following recently on twitter and whose bio on twitter is "Real advice.  Real stories.  Real moms." just posted a link to her "momstrosity" post titled, "10 Must Have Products for Paranoid Parents" and thinking it would be funny, I tuned in.  The first item was semi-funny - mostly because of the ears on it...then the second item popped up and lo and behold, it was the sign that I have hanging on Bean's carseat and stroller - its the one in the very upper-left corner of the picture included with this post.  It reads, "Please wash your hands before touching mine" and it is a little pink stop sign.  The entry on Momlogic reads"
Here’s a product for those nervous parents who never let another human being touch their baby … unless that person has scrubbed down like a doctor before surgery. My Tiny Hands tells the great unwashed to keep their greasy mitts off your pristine child. Do they sell one for Mom that says “Control Freak?”

Read more:
Awesome.  That is totally who I am - a control freak who has a pristine child.  Except not at all...I guess the lesson to be learned from this is one should never assume to know why a parent is doing something.  And it aggravates me that a mom's website would further the myth that these signs are nothing more than just paranoia to be ridiculed and ignored if the parent is not around (people thinking - oh, I don't need to wash my hands - that is just a paranoid parent speaking...and then touching the child - preemie, immuno-suppressed, whatever the situation).  I am just as bad as others at making assumptions about things and people, but we should all remember what happens when we assume things...

The story behind these pink stop signs is truly special and meaningful, and I for one am very much appreciative of the mother who took the time and risked the ridicule to create these signs.  Her daughter was born at 35 weeks.  She speaks on her website, My Tiny Hands about how "awkward" she felt about asking her friends and family, let alone strangers, not to touch the baby without washing their hands first.  She discussed RSV, which is what sent Bean to the hospital the first time and how flu season was such a threat.  I hope that people will take the time to visit the website and realize that these are actually very useful and for some of us parents, very necessary signs rather than just accepting how ridiculous and overprotective the request is.

Sorry for the rant...this one just touched something off in me!

Saturday, April 10, 2010

Are you an organ donor? Make it known!

As everyone who has followed this blog at all knows, my daughter is a heart transplant recipient.  It still seems strange to say that, even though it has been 3/4 of a year since she received it.  It just seems like such a foreign concept.  Although I often heard of organ donation in the news and even from family and friends, I had never known anyone personally who had had one.  And although I have always had the little pink sticker on my driver's license (that used to indicate organ donation - it now is directly on the new licenses), I had never really thought much about organ donation and the impact that every donor can make on the world.  April is "Donate Life Month" so I wanted to remind all those who read this blog to consider becoming an organ donor and to make sure that if you make the decision to become an organ donor, to let those around you know!  The first reason is to make sure your wishes are known, the second is to spread the word and get those who have not considered organ donation to think about it and make a decision for themselves.

In case you have not read Bean's story, I will take this chance to share some pertinent details, as well as some related statistics.  Bean ended up at Lucille Packard Children's Hospital after being at two other hospitals, with a diagnosis of Idiopathic Dilated Cardiomyopathy.  Although some children with this diagnosis can be treated for years and years with drugs, Bean was one of the approximate 33% who end up needing a heart transplant to survive.  Because she was in the hospital, on a ventilator, she was listed as a 1A status with the United Network for Organ Sharing database.  We were told at the time that we should expect a long wait and that she may need a "bridging device" in order to survive the long wait.  A Berlin Heart was ordered for her and was kept on site in case her heart took a turn for the worse while waiting.  One thing you soon learn when waiting for a transplant is that there is no "usual" - each story is different.  But, the doctors and social workers still supply you with statistics in the hopes of giving you some idea of the range of possibilities.  According to Science Daily, up to 40% of infants die while waiting for a donor heart and the average wait is two months, although new attempts at using ABO-incompatible hearts are showing promise in decreasing both those numbers.  Because Bean was a preemie, she was extremely small (under seven pounds at the time she entered the hospital) and she also had the hardest blood type to match, so we were told that average of two months may stretch out to six months and even a year.   We settled in at Stanford to wait.  But, shockingly, a heart came in less than 30 days.  On July 6, 2009 we received word there was a heart that was compatible and had been examined by the transplant team and found to be a good candidate for Bean.  The surgery would wait until July 7, because other organs were also being donated and the heart is the last organ to be taken for donation.  I don't know how many other babies were helped and maybe even saved by these donations, but it still amazes me that some parent was able to see through what must have been crushing grief to think about others who could be saved by their tragedy.  I am so thankful for that decision.

Organ donation is a gift that gives exponentially.  Obviously, Bean was saved by organ donation, but the effect of that is felt and known by a myriad of people and will be felt for years and years to come.  According to UNOS data, today there are 106,937 people waiting for transplants and since January of 2010, only 2,198 transplants have been performed.  Consider the impact you can have by becoming a donor.

Please feel free to use Bean's story to spread the word about the benefits of organ donation and if anyone out there reading would like me to share Bean's story with an organization, on a website or anywhere else to help raise awareness, please feel free to email me.  I am in the process of becoming an Organ Donation Ambassador, but would love to share our story in any capacity.

I would also like to say to all the donors and donor families out there that I thank you.  I thank you for thinking of others and impacting others in a way that few others are able.  I would like to say that you are not only saving lives, but you are changing lives for many, many years to come with your gifts.  Thank you, thank you, thank you.

Thursday, April 1, 2010

For Fun - Parent Job Announcement

This was posted on one of the listservs I am a member of and I thought it was cute.  Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:

Mom, Mommy, Mama, Ma
Dad, Daddy, Dada, Pa, Pop


Long term, team players needed, for challenging permanent work in an, often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities! Travel expenses not reimbursed. Extensive courier duties also required.


The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets
and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product.
Responsibilities also include floor maintenance and janitorial work throughout the facility.


None.  Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.


None required unfortunately. On-the-job training offered on a continually exhausting basis.


Get this!   You pay them! Offering frequent raises and bonuses A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.


While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth, unconditional love, and free hugs and kisses for life if you play your cards right.

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...