"Always worried, always responsible, and always grateful"

I just wanted to give you a little update on Abby!  Yes, we are home and happy about that!!  It felt good to sleep in a real bed and hang out in my own house with all 3 of my kids!!  Unfortunately, Abby is not better yet.  She still has CMV, almost as bad as she had it in the beginning.  We have arranged for a  home health nurse to come on Saturday mornings to give Abby an IV of Cytogam.  Cytogam is antibodies taken from healthy human blood, that helps to fight the CMV.  We'll continue this treatment, then check her levels, once a week.  When her CMV levels come down enough, we can stop the cytogam infusions.  We also have to go back up to clinic on the 23rd.  Abby feels okay, but she's real tired and she still continues to lose weight.  When we asked the transplant team if she'll be better by our make-a-wish cruise, they said that she should be okay if she really takes it easy until then.  That means no soccer for a while-Abby wasn't too happy about that!!  School will be hit and miss for the rest of the year too, and she'll have to wear a mask again-not Abby's favorite thing to do!  But, I guess this will all be worth it if we can go on our cruise!!  Abby misses her friends, but she's taking things in stride, like she always does.  Her high spirits and positive attitude continue to amaze me every day!  With everything she's been through the past couple of weeks, she has a right to be a real grouch, but she never is, she just takes it with a smile on her face.

Going back to school and trying to take care of Abby and her new needs has been hard for me.  I couldn't help but to laugh out loud when I heard that many of my students thought I had been gone from school because I was on a cruise!!  HaHaHa, boy were they wrong!  I had to put those rumors to rest!  I have to leave Abby home everyday while I work and I don't like that.  Add to that the new worries and stress with what we've been going through, and it makes everything even just a little harder.  I even checked into taking the rest of this school year off to take care of Abby and myself for a while, but financially, it just won't work out.  Missing the last 30 days of school would cost me about $10,000-definitely not worth it!  I keep telling myself that I just need to make it through the school year, but I can't do that, I can't be a lazy teacher and just "survive", I've tried and I just can't.  I care too much about my students and I want to teach them as much as I possibly can before they leave my class, it's my responsibility as their teacher.  So, I'll just keep running myself into the ground until May 23rd, then I'll get a break, and a minute to catch up with everything that's happened to us the past year.  Sometimes it's hard to keep up with everything that I need to be doing, and so many people have offered to help, but they are all things that I need to do.  I wish I could just give someone else the constant worry and responsibility for a day or two.....but it doesn't work that way. 

I recently read an article that was posted in a heart tranplant site, that was titled: "Always worried, always responsible, and always grateful."  It was an article that summed up interviews from many different parents of school-age heart transplant recipients.  The title says it all!  This role as parent of a child that has had a heart transplant is full of worry and responsibility, but everytime things start to look too hard or too overwhelming, the "always grateful" seems to take over.  Today, right after I got off the phone and learned that I couldn't take the rest of the school year off, I was feeling pretty discouraged.  I decided to look at my facebook page, and that's when I learned that one of our heart friends had received "the call" for her heart and was waiting at PCMC!  All of the emotions from that day came right back to me.  I could'nt help but to feel all of those same things I felt on July 12th, only 9 months (exactly) ago!  Although there were lots and lots of emotions going through me, the one I felt the most was one gratitude.  Gratitude for the donor family, gratitude that Abby got her heart when she did, gratitude that we are home together, gratitude that Abby is still with us and survived May 18th.  Pure gratitude.  It was a good reminder for me to put things back into perspective.  I haven't heard how our friend is doing, she's probably just going in for her transplant now, but I know that right now they are also feeling complete gratitude.