Kit:  Country Roads by Connie Prince & Template:  Summer Bytes 4 Template 2 by Seatrout Scraps


Journaling reads:


Before 2011 you were just a normal teenage girl enjoying your freshman year.  You had just started babysitting, rehearsing in Pride & Prejudice, and starting to drive.  Who knew a stomach virus could change all that?!  I still remember when you first got sick and I kept thinking, "all she needs is some IV fluids and we will be home before long."  I also remember when you started passing out and I kept thinking, "you just need rest… the play is exhausting you…you'll be fine before long."  I think the next few months became my worst nightmare.  You went from running around with a busy social life to not being able to walk ten steps without passing out.  I just couldn't understand why no one could figure out what was wrong.  It seemed like such a blessing when you were transferred to Cleveland Rainbow Babies and Children's Hospital.  I can't believe I was so overwhelmed that I forgot to tell you we were leaving for Cleveland and you found out only after seeing it on Facebook!  You still haven't let me live that down!!  I am so very grateful Dr. C accepted you as a patient!  I didn't like all the poking and prodding though - as I'm sure you didn't either!  Watching you during the tilt table test was just as torturous for me as it was for you!  It was almost like they enjoyed seeing you pass out, regain consciousness, and pass out again!  But after all the tests, did you hear me cry when we got the diagnosis of P.OT.s?  I was so relieved we finally had answers.  I became obsessed with learning all about Postural Orthostatic Tachycardia syndrome!  I agree with you that those next few months were rough.  Even worse than before you were diagnosed.  I felt so badly every time you face planted and I wasn't able to catch you.  I knew you were so tired of me constantly fussing at you.  I knew you were tired of depending on all of us to even walk to the bathroom. I knew you hated the wheelchair.  I knew you hated the nursing home and anti-gravity treadmill.  I can't believe your so-called friends stopped coming to see you.  I don't know that I will ever forgive them for that.  So what they couldn't handle seeing you "check out" as we liked to call it?  Still, we had some good times.  I remember you getting mad at me for laughing whenever Zach played pretend and his army men would pass out.  You didn't see the humor in that at all! That's okay, I wasn't laughing anymore when that evil Toradol medicine started making you have seizures!  Those two hospitalizations about threw us all over the edge!  I still can't believe that the beta-blocker Nadalol made such a difference.  It was almost overnight that you stopped passing out.  Maddie, you went from being in a wheelchair to using a walker in under a year!  True, in the beginning your walker was a "faller" as you passed out over it, and then it became a "sitter" as we pushed you around, and finally it became a true walker as you used it to stay balanced.  Now look at you though.  Can you believe in the two years since you were first diagnosed you went from being bedridden to running?  I know, you aren't happy that you still pass out, get dizzy, and have pseudo-seizures.  I know you want to drive.  I know you hate your medicines.  I know you hate the daily exercises.  I know you want to be a normal 17 year old girl.  I even know how much you hate your compression stockings.  You aren't very shy about sharing THAT!  Well baby girl, if I could have anything it would be a cure for        P.O.T.s.  I would wave my wand and you would be healed.  But since that can't happen, I love knowing that you are out of the wheelchair and walking, that you are down to 10 meds, that you are doing school again and kicking booty, and that you can RUN!  What's the occasional pass-out when you can do so much Smile  You have come a long way darling and your dad and I are proud of you for keeping your faith and working so hard.  Yes I'd like a cure, but I'm sure grateful that I just have you!