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Friday, October 31, 2014

National EB Awareness Week

Today is the last day of  National EB Awareness Week.  Normally I do a series of daily blog posts that week; this year I did nothing.  Well, I take that back, I did tweet some articles about EB on Twitter, but that was it.  No daily Facebook posts sharing with my friends, family and co-workers the good and bad of EB; no blog posts about EB facts or statistics. 

It is not that I forgot that it was EB awareness week, I just choose not to participate this year.  I still support all things EB; however it has become harder and harder to feel like we "fit in."  I spent all week trying to figure out what we are doing wrong; why I feel so out of place.  Maybe it is because I dislike the message people are sharing about EB as a whole.  My news feeds was filled with nothing but phrases like "I hate EB" and "the worse disease you have never heard of it"  I find that phrase in particular DEEPLY offensive; I always have.  Mainly because EB is not a disease; it is a disorder or condition.  I know those phrases are used for the "shock value" to pull at people's heart string and pocketbooks.  But as someone with EB, it is offensive to me.   Why can't the show the good that can and does come from EB?  Why must we focus on the negative??  What is that saying to our own children???  And for those who say, well my kid isn't old enough to see what I post.  Well that may be true right now, but someday they will read it and how will you explain yourself to them at that point?? 

EB is hard, I get that.  I know some with EB suffer daily; I see it all over Facebook every single day.  And I have lived with it every day of my life but I still don't understand why we need to focus on the negative all the time.   Why not show what positive, productive members of society people with EB are??  Oh that is right, that doesn't make money like showing what is underneath the bandages does.  I am all for a cure but I am not sure exploiting our kids in some of the ways I have seen, is the way to achieve that.

Last night a fellow EB mom posted the following on Facebook; it was from a brochure she received when her son with born with EB earlier this year.  It was written by a fellow EB mom with a now teenage son. 

The primary goals of EB care are: protection of the skin against trauma, prevention of infection, maintaining the highest possible level of nutrition and avoiding dietary complications, minimizing deformities and contractures and sustaining a strong support system and a positive attitude. Many of the complications of EB can be lessened or even avoided with proper early intervention and care.

I highlighted two phrases that I feel are LACKING in the EB community.   There is such a resistance to feeding tubes within the EB community, that I could go on for days about that, but I won't.  I also feel that a positive attitude is greatly lacking in the EB community as well.  Sure we have bad days; but there is so much focus on what our kids CAN'T do because they have EB or what their family CAN'T do because of EB.  Why can we focus for one week on what we CAN do??   I seriously can not recall a time my kids missed out on something because of EB or we as a family has to skip an event because of EB.  We seem to be one of the few that doesn't allow EB to run our lives.  Sure we make make modifications at times because of the location, weather or event but overall we don't skip things just because of EB. 

Perhaps since I have EB I will never know what it is like to "just" be an EB parent.  Maybe I will never understand their disappointment, heartache and struggles as an EB parent.  I feel like I have the same struggles but I guess having EB makes me approach the whole situation with a different attitude.   I already know what my kids are feeling, thinking and what they need when they need it.  Perhaps that give me an advantage to being an EB parent.  But it also makes me feel like an outsider.  I know annoy people by focusing on the positives of EB; but it is just the way I am.  I know this post will piss people off and probably get some negative comments; and I am sure someone will tell me I have zero tact, but I am the kind of person who will stand up and say what what needs to be said and what everyone else is too afraid to say themselves.    

At the end of the day I still support EB and all those that endue it every day; but I will attempt to do it in the most positive way possible and encourage you to try and focus more on the positives than on the negatives. 

Saturday, July 26, 2014

My friend Jamie....

16 days ago humanity lost a great person....

I first "met" Jamie over 10 years in an on-line group for women with EB.  We communicated on and off thru the years; ran an on-line EB support group together for a while and even met in person a few times.  Jamie and I were born just 2 weeks apart; were married on the same day (6 years apart) and we both had EB.  Jamie had a more severe form though; a form that took the life of her older brother when he was just 19.  

Jamie was so much more than someone with EB.  She was a daughter, a sister, an aunt, a friend, a wife, a painter, a singer and the list goes on.  

I knew Jamie had been battling a form of cancer, that is common in her form of EB, for many years.  I also knew when she decided that quality of life was more important that quantity of life.  Jamie passed away on July 10 surrounded by her loving husband and family by her side.  She fought a brave and inspirational battle up until the very end. 

Since her death, her wonderful Husband Taylor has used his incredible loss to share Jamie's life with the entire world .   It is a love story like no other!  I have learned so many things about Jamie over these past two week;  I have laughed and I have cried.  I am so blessed to have known her and to call her my friend.

I encourage all of you to take the time to sit and read her extraordinary obituary here.  Then head on over and read the love story of Jamie and Taylor.  I PROMISE YOU, it will be worth your time and your tears :-)

Rest in Peace my have earned it.

Monday, June 16, 2014

18 years and 1 week ago today....

18 years and one week ago today, I graduated from high school.  And just the sound of that makes me feel old!  During my senior year I took only the classes I had to; I couldn't wait to get out of high school and into the real world.  I was tired of papers, projects and tests.

At that time, we were the largest class to graduate from those halls; the first class in many years who's graduation was held inside the gym due to rain and not out on the football field like so many years before.  We all couldn't wait to go to collage, start working, and be adults! 

But once high school was done, I wanted to go back.  I missed the days where homework and what color prom dress was my biggest worry.  I wished I had stuck it out and took band my senior year; I regretted letting my minor tennis injury sideline me my last year on the tennis team. I missed my lab partners in advanced biology and the cows we had to study! 

I wasn't very popular in high school but I did have a small circle of friends.  Sadly many of us lost touch over the years.  But thanks to social media it is now much easier to to keep up with everyone!
Since joining Facebook about 7 years ago I have enjoyed seeing who still lives in my home town; seeing who moved away but were eventually drawn back to the familiar place they grew up in. It is fun to see who married whom; who has kids and how many.  It warms my heart to see everyone offer notes of cheer and congratulations when someone posts about a new job, a new child/niece/nephew/grandchild or a marriage! 

Sadly our class is also not immune to tragedy either. We have lost beloved teachers to aggressive cancers; classmates to accidents and illness's. We have offered support, prayer and condolences when classmates battle chronic illness or have lost family and friends; parents and grandparents; and sadly some have even lost spouses and children of their own. 

So almost two decades later I am still proud to be part of the class of '96! For those I am friend with here on Facebook, thank you for sharing bits and pieces of your lives with everyone.  I have truly enjoyed following your journey thru life.

Thursday, May 29, 2014

A very big honor....

About 7 years ago Sami started her educational career.  She started late in the school year in an ESE preschool due being socially and emotionally delayed. After all, she had a rough start to life, born 6 week early with a rare genetic skin condition.  We almost lost her twice due to infection.  Then at 11 months she was diagnosed with congenital scoliosis.  She didn't walk until age 2 and didn't talk until age 3.  She was excited about school; we hoped she would start to catch up.  After a couple of month she was a different child.  And school thought she was ready for kindergarten already.  But we were nervous; she has a late summer birthday and would start kindergarten at age 4 almost 5.  I wanted to wait until she was 5 almost 6 but school insisted she was ready.  So two weeks before her 5th birthday she went off to kindergarten!  She did very well and was transformed into a new child!  Her entire time in Elementary school was a positive experience.  She had GREAT teachers who not only educated her but also loved her and help shape her into the person she is today.  And we will be forever grateful for them!  

Here is a collections of photos of her over the years:-)

Last fall she started her first year of middle school. New teachers, new friends, harder classes. New people to educate about EB and her spine issue.  It took a while to get into a new routine of bed time, getting up and ready for school (on time!), homework, projects and tests.  It didn't take her too long to get social life and a GREAT group of new friends!!

She made A/B honor roll the very first semester in middle school!!  Her end of year school project was one of 45 out of 400+ students to be chosen to be voted upon my the mayor and members of work at city hall.  Of those 45 she won the top honor- the mayors choice award!!

There were many days she would wake up and her back would hurt so bad she couldn't even move.  But she would push thru and make it to school on time and stayed all day.  She also missed very few days due to illness or pain.

Well, tonight was a culmination of her hard work and dedication. Tonight Sami was accepted into her school's National Junior Honors Society!  Assuming her grades don't drastically change in the next week, she will end her first year of middle school with a 3.875 GPA!  We are so VERY PROUD of her!!! 

Monday, April 21, 2014

NOT the school mascot

This not so little guy (about 7 FEET in length) lives in the retention pond across the street from Sami's school.  We see him a lot when we go to pick her up.  Joey always ask to get out and pet him...uh..that would be a BIG FAT NO!!!

Saturday, March 22, 2014

Spring has sprung!

Well the calendar says spring has arrived!  But for most of the country it still feels like winter and here it already feels like summer!  

It has been awhile since I have blogged....I had been meaning too.  A lot has happened, but my free time is far and few between.

Here is a summary of the past few weeks:

December:  aside from the Holiday's we traded in the truck for a 2005 mini-van!

January:  Sami got braces!  Summer needs them too but we can barely afford one in braces so sadly Summer will have to wait.  I also found out I will be losing my medical insurance at work :(  And for those who never looked into the Health Care Market place, you should; none of the plans are cheap and the only way I would qualify for a subsidy would be to stop working all together :( I was able to get a plan with a decent copay and deductible but it is quite expensive compared to what I had before.

February:  We took a trip to the beach and blew a tired on I-75 on the way home.  It did A LOT of damage to the van:(  1 month and a lot of money later we finally got it back! 

March:  Summer turned 8 and Joey turned 3.  We had a smaller party at home for the two of them and planned a party with a few friends from school for Summer but no one showed up:( She was very upset.  A friend of mine made some AWESOME cakes for them though!  

We are now on spring break and that means only 9 weeks of school left!!!  This year has flown by so fast.  Sami is doing well in middle school.  Grace adjusted to kindergarten well.  Summer had struggled a bit with common core this year and some issues with how her brain processes sounds (her teacher and doctors agrees) but there is no treatment and it is not considered a learning disability, so we just try to work with her and be patient.  

That pretty much sums it up!  Thanks for reading.