Monday, June 17, 2013

Random Thoughts

If you are not an HGTV nerd like me, you may not love Brian Baeumler (HGTV host) as much as I do.  However, I happen to think he is fabulous and earlier this week I received an email which gave me reason to love him even more!
Bryan Baeumler and his wife Sarah have created the Baeumler Family Foundation (BFF) with the intention of helping children and families in need.  The Baeumler Family Foundation is a charitable organization focused on providing renovations for children and families that need accessibility or improvements to their homes, and could not otherwise afford the necessary modifications.  The BFF strives to help families better the quality of life for their children.
They are encouraging applications from health care workers on behalf of patients, or from the families themselves. More information, including the application form can be found at  If you know anyone at all who could benefit from this generosity, please forward to them or better yet, think about applying on behalf of them!  What an amazing gift that would be!

Alexa has had one main EA since the beginning of January. Since being paired up with her, she has done wonderfully at school.  She has made many advancements and has had a great year.  We all (EA, principal and myself) agreed that it would be best if they remained together for Senior Kindergarten as well.
About a month or so ago, I was informed that a new EA had been placed with Alexa for next year.  While we all agree that her current one would be what is best for her, there are union rules and schedules that one must follow.  I get it, I work in unionized environment too--heck I am a union member!!! But when it is YOUR child that gets affected because of these stupid rules......I was upset!  And ready to fight!  As a parent of children with special/medical needs, you NEED to be PREPARED to fight ALWAYS!  Sad that it has to be that way, but it does!  THIS TIME, however was different!  I didn't have to fight (very much! lol)  The EA and principal and superintendent did it for me!  They kept on top of it, emailing the HR dept.; kept in touch with me and then on Friday I got the wonderful news that our EA had been called the night before and was offered (and accepted) next year's placement with Alexa.  Having other people advocate for Alexa certainly was different--I am not used to that--It is nice!  She will have such a difficult adjustment after the transplant; knowing that she has at least one familiar face and one constant person will make it that much easier!  It really does take that one stress off my plate!

I finally started getting things in order for the upcoming transplant--at least at work!  I have put in my leave of absence request and looked into benefit options while I am off without pay.  Last week I started packing up my personal files and other items as someone else is likely to be occupying my desk while I am off.  And then it hit me! The last time I packed up my "stuff" was exactly 5 years ago (almost to the day) while I was preparing for my upcoming maternity leave.  How different it was back then...If I knew then, what I know now! Isn't that the saying?.  It's true! I was young, naive, full of hope, so excited to be off for a year with the new life I was about to meet very soon.
This time if my co-workers had not been in the room with me, I swear I would have cried--I had to hold it in numerous times.  This time is nothing like the last--this time, I am scared, nervous, worried.  This time I know enough to know that we have quite a hard journey ahead of us!  
I gave some co-workers things of mine to "take care" of while I am gone.  Their response was "you are not going to be gone forever".  While it's true, that is exactly what it feels like right now.

Oh yeah--Alexa's 5th Birthday is in 3 days and we couldn't be more excited! We have quite the celebrations prepared.  In the meantime,  she has been scouting the stores for things to add to her "wish list".  This is her latest and I think she is pretty pleased with herself!

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