Ok, so I am not so great at keeping up with posts...or updates....Not sure where the last 3 months have gone, but they have flown by.  Happy Memorial Day to all.  It marks the start of summer; the end of another school year, looking forward to Seth and Abby moving on to the next grade.  It begins our favorite time of the year as a family - lake season.  We pack up the car and head to Cushing Park on Friday nights, and reluctantly come back home on Sunday afternoon.  Every Monday Seth begins asking how many nights we get to stay there and starts vying to eek another night out of it. He loves it there, has grown up there and so has Abby.  Many wonderful family memories have been made, many new friends, lots of smores, grilling on, yes, CHARCOAL!

We joined the park in 2002 - the year after Jack passed away.  Kevin and I agreed that we needed something new; something that we had not done before with Jack.  As Memorial Day weekend approaches each year, I find myself looking forward to the summer ahead with Seth, Abby and Kevin, but also drawn back to Memorial Day weekend, 2001.  As Memorial Day approached that year, Jack went into heart failure - was admitted to ICU...the shock and desperation floods back like it was yesterday.  I remember the spot I was standing outside of Egleston Hospital when I called my friend Anne to get Jack's mito doc's telephone number in Cleveland; telling her that he was critical  - - - and how surreal it sounded on the phone.  The days passed; family members arrived from all over the country; my dear friend Barbara arranging a Make a Wish Party and the local chapter pulling it together in 24 hours....the phone call from the Red Power Ranger.  Every summer since then, memories come throughout - the days marked by uncontrollable pain; the infections; the electric wheelchair that he HATED but Abby loved.....there are still knicks in the walls from that !  All the memories grow throughout each summer, and end when summer ends - Labor Day weekend, when he left us.  I get squirrelly every year at this time... I know its coming, and I can do little to stop it.  It's actually kind of frustrating - not being able to get a grip after all this time.  I have always hated conflicting emotions - I am ok being sad, or angry or joyful or happy - I am not ok being more than one of them at once.  And that is what happens each year - I am excited for Seth and Abby as they finish their school year and have their celebrations and look forward to their vacation, but I cannot reconcile the fact that they have both now surpassed in age their older brother.  This year, I have thought not only of Jack and those moments with him that I will forever cherish, as well as the ones that I wish I could banish forever, but of Dr. Patty.  She was with us through it all and I still cannot believe she is gone.  I really hope that she and Jack roasted some marshmallows and ate some smores together this weekend.

Tomorrow Abby and I leave for Cleveland again.  She will have some testing done on Wednesday, and see the autonomic docs on Thursday, and hopefully the surgeon too so that we can fix her C tube.  She is hoping that Dr. Mr. C can help her with her sleep issues again, and that the blood pressure that keeps dropping way too low can be dealt with, and that her favorite surgeon can stop her c-tube from leaking, so that when she starts her accelerated classes in 8th grade in August, she won't miss school.  Nothing makes her madder than when she has to miss school!  We were considering driving, but have decided to fly instead.  I was really not wanting to go; was feeling like it is a bit futile, then Tracy reminded me that last year at this time, we could not even have begun to consider driving to Cleveland because of the nausea and pain...and that is  SO much better now, and all we can contribute it to are our many trips to Cleveland.  So, I have a new perspective and travelling to Rainbow Babies doesn't seem so bad now!  Praying that these trips continue to improve the pain and nausea, which is much more sporadic now, and that they will help with the new symptoms that have arisen, and that we get to spend the next 2 months adding to the good summer memories, before beginning an 8th grade year of close to perfect attendance