Wednesday, September 26, 2012





Every single one of you rocks!  Every single one of you is an angel! Every single one of you is a gift beyond description!  And together we are way bigger than the sum of our parts.

I've been waiting to post the final number of the fundraiser for Patrick, as checks continued to come in. But this is where we are at and we exceeded all of our expectations.  I've been part of a few grass root efforts for social change, all rewarding, but nothing like this.  This was money raised through word of mouth, Facebook and email.  I will never curse my computer again!

The donations received ranged from $15-$1000.00, with the majority being between $25-$100.  No publicity, no raffles or fancy dinners with free cocktails (not that there's anything wrong with any of those things!)  Just regular people responding to a need with money or time.  Its amazing and brings tears to my eyes as I write this post.

Patrick is doing great.  He just got back from Baltimore and is VERY close to having his trach removed.  He rocked Kennedy Kreiger (part of Johns Hopkins) and had everyone eating out of his hand.  AND, he actually admitted to missing me!  Once. And then immediately told me to put him in his stander.  I'll take it.

More good news.  I think I mentioned in an earlier post that the guys that announce the Triathlon are amazing and they were particularly kind to me, making a big deal over my finishing and making me feel like a million bucks.  I emailed them to thank them for making the day so special for me and sent them the link to our blog.  Well, both guys wrote back and had read some of the blog and were fascinated with Patrick's story.  They asked that if I do the triathlon next year, I let them know so they can follow us and really give a shout out!  THEN, I got an email from the PR group that covers the Chicago Triathlon and he asked me to definitely contact him ahead of time next year and he would cover Patrick's story and help us raise more money!  So.........



I'll keep you posted......

Wednesday, September 5, 2012


EVERYONE has been asking me, "What did Patrick say when you crossed the finish line"?

I finally have an answer!  I received a text from Patrick today reading, "I never thought you could do it.  Congratulations and thanks"!  I almost fell over.  This the Patrick equivalent of jumping up, hugging me, kissing me, renting a sky writer plane, taking out an ad in the paper.  He's  very understated..And I know he means that as a global thanks to all of you who have supported us and contributed!!  I do not have $$ totals yet, but should very soon and will let everyone know exactly how successful this journey has been.

Patrick was not able to be at the finish line because he is at Kennedy Kreiger Institute in Baltimore Maryland.  Everything his parents say about this place is amazing.  Constant positive attitude.  Innovative thinking.  They never say never.  Pat is well on his way to decannulation, which is the technical term for having his trach tube removed.  This place is expert at doing this and has had 100% success.

Patrick has felt for two years now, that his trach tube in unnecessary.  There are two camps of thought on this.  The more conservative camp is concerned for his safety and risk of choking if the trach is removed.  When we cough, the mucous we cough up, passes from our lungs, up the trachea and into our mouth where we spit it out or swallow it. (right now you are probably gagging...but its just the human body!).  You aren't even aware of this unless you have a bad cold or bronchitis.  When Patrick coughs, the mucous in his lungs comes out of his trach and is often suctioned out with a small tube.  Some folks are concerned that if the trach tube is out, we will not be able to reach his secretions and he may not be able to cough it up into his mouth.  And he could not choke.  Not good.

The other camp, headed by Patrick, believes that the trach itself is an irritant and creates mucous (true),  he would be better able to cough effectively without the tube and would be better able to swallow.  All true too.

But with the risk being choking, you can understand why some members of his medical team are hesitant to remove the tube.  But Patrick convinced me a long time ago he understands his body and I have learned to trust him.  This hospital has a great program with controlled protocols and if his trach is going to come out, this is the place.  So if you are praying people, believe in the power of nature, the stars, your own higher being...put in a few good thoughts for Pat.  He's very close to a huge milestone.

Patrick gets angry, but never overtly complains or feels sorry for himself.  One time, when I needed to go with him to an event that included many of his friends and former classmates, he was really pissed off I was going.  "No way"  "Do you seriously think you are coming" "No chance I am getting into the van with you".

When I asked him why he was so pissed off about me going with him, he said "do you think anyone else will have a nurse there"?

"Well if they are paralyzed, in a wheel chair and have a trach, they will".

He just looked at me.  He's usually not so adamant about wanting me to stay out of the picture.

"Just one more way you're different, bud"?


I get it.  We all get it.  We want to pick the times when we stand out, as well as why we stand out.  Sometimes you just want to be part of the group.  I'm proud of what I have accomplished in my life, but  sometimes standing out because I'm fat isn't my first choice.  Most of the time I don't care, because its my truth and at my age I've had a lot of time to figure things out.  But sometimes I would just like to blend in.  Magnify that by a million and you have Patrick's situation.  Most of the time he could care less if you are staring, asking questions or ignoring him because you don't know what to say.  This is his truth now and he accepts it.  But he's 19 and sometimes he wants to blend in.

Getting this freakin trach out puts him one step closer.