Wednesday, October 19, 2011


We are home and settled back into the routine of every day life.  Most importantly, we are home where we have help with Jack.  I don't want to harp too much on how truly exhausting it is to travel 3000 miles with a ventilator dependent, essentially quadriplegic, almost thirteen year old, eighty pound child because the fact is - I choose to travel to St. Louis - I'm not required to travel there.  But, I don't think it's possible for most people to really understand the amount of physical work involved in traveling half way across country with Jack.  Jack does not travel in his wheelchair, he sits in one of the captain's seats in the van.  Therefore, when we stop for the night at a hotel, Mark has to lift Jack out of the seat and carry him out of the van, the whole time Jack is disconnected from his vent and I'm right there assisting with the transfer and hooking Jack up to his other vent once he is in his wheelchair.  This lifting of Jack alone is back-breaking.  Add to that the unloading and loading of his equipment and supplies - which requires two trips with a fully loaded hotel dolly.  I counted that on this trip - because we did it over three days each way and we also had a minor delay due to car trouble which required an additional, temporary hotel stop - we loaded and unloaded Jack and all his stuff 14 times!   I need to get a video of the loading and unloading process just to give you an idea of all that is involved. Mark says we look like a traveling circus.

I'll also not complain too much about having to provide all of Jack's care 24/7 for 10 days straight with no help because I know some of you who read my blog don't have nursing help and you provide all your child's care all the time.  However, I can tell you - I could never be Jack's full-time caregiver.  I'd be dead by now. Seriously.

My whole point being that even though I took a trip to St. Louis and I was away from the office for six days, I was NOT on a VACATION people!  (what I want to scream when people ask me how my "vacation" was.)

In any event, we made it home safe and sound, Jack is well and Mark and I are slowly recovering.  It takes us about a year to recover and erase from our memory the hell of this trip.  Just in time to do it all over again! :)

Okay, so we did have one "fun" day. The last day in St. Louis, the weather was beautiful, so Mark and I decided to take Jack to the St. Louis Zoo.  Jack didn't really enjoy it too much because it was windy and he was probably still recovering from the prior day's eye surgery.  Oh well, we made a valiant effort at trying to have some fun with Jack while in St. Louis.

Mark's awesome picture of us on the Merry-Go-Round. Granted, he was trying to get a picture of a moving target.

Lots going on over the next few weeks.  I'm walking the LA 1/2 in less than two weeks and I haven't trained one bit for the walk.  Not sure what I was thinking agreeing to do this knowing that I haven't trained like I did last year.  Then again, I'm only walking it - I'm not running it.  But, there is still a time limit, so I do have to walk with some speed.  Wish me luck!  

Jack's 13th birthday is fast approaching.  So much I want to share, but finding the time to put my thoughts to words (and maybe a video) - therein lies the challenge.  Hopefully, I'll come up with something that does justice to his reaching the milestone of being a teenager.  (can you believe that?!)

Thanks for checking in my friends.  Have a fabulous rest of the week! 


worthy said...

Sounds like after that trip you NEED a vacation! Glad you are home safe and with the care and support you both need. Just reading about your trip has exhausted me!

The Hogan family said...

Ann, The whole vacation thing drives me crazy. I am pretty sure that Paul has not taken a vacation day for anything but medical stuff more than three times in the the past seven frustration! And by the way, you have every right to complain...everybody has their own crap to deal with and this is yours! I HATE unpacking all of Keyan's stuff for one is amazing what these kids require! I know how exhausting it is, but you are great parents for giving Jack what you think is best! Oh, and I can't tell you how many pictures we have like the one on the Marry-go-round! Made me laugh right out loud! Hang in there.

Susan said...

Glad you had a good vacation. Ha, ha, ha. Sorry. Just kidding. Sigh. You amaze me and I applaud you and Mark for taking Jack where you think he gets the best care. A vacation it is NOT. But I'm glad you made time for some fun too. Good luck with everything you have going on. I can't believe Jack is going to be a teenager. I hope he has a great birthday!

CS said...

Ugh, Ann. I know exactly what it -the packing/unloading/organizing-looks like for you and I'm exhausted just thinking about it. Jack is so lucky to have the parents willing to go through so much to make sure he has the best care, even if they do go crazy in the process. And I understand having to cram something fun into the trip. There has to be something redeeming other than "maintaining" our kids.