Another year, another walk

Hello, hello.  Tomorrow is the big Salt Lake City Hydrocephalus Association WALK again...although this year I have added a motorcycle ride to the mix (as it was an easy way to get Chad and the rest of our friends excited about the event).  :)

So at this point, based on registration and on-site trending, we are expecting between 250-275 and I am a little high strung!  It starts early (8:00 a.m.) so I will be at the park by 6:00 and have taken today off to run around like a mad-woman gathering up all of the last-minute needs.  Whew, what a crazy, fun, exhausting experience.  I can't believe this is year #3 of this occasion for me!

I have such mixed emotions about the Hydrocephalus Association events; in some ways, I am so grateful I can help and give back to a cause that means so much to me; truly a wonderful organization that I believe in wholeheartedly, as I have relied on them when it mattered most - and still do as they direct more ongoing research.  But in other ways, it is a reminder that I am different than most (as I try so hard to forget) and it can be a sad reality.

I love and hate hydrocephalus.  I love that it gives me a different sense of empathy and compassion for people that struggle with physical ailments.  I love that it allows me the opportunity to be humbled and truly rely on my family, friends, and the Lord to carry me through pain, surgeries, and tough times.  I love the friends I have made through my interactions with other patients, family members, and loved ones of those impacted by hydrocephalus.  I love that it has created opportunities otherwise unknown for me to serve and be an advocate for those who cannot stand up for themselves.

But, I hate that it hurts so much.  I hate the uncertainty that any day could result in a failure and surgery.  I hate that my life will be plagued with excessive worry and precautionary measures everyday "just in case".  I hate that most days my head hurts and I know that I don't want to complain, so it means quietly dealing with the pain, nausea, and dizziness, as I don't want to be a miserable person for those that mean the most to me.  I hate that sometimes I feel less than others because a small mechanical plastic valve and few feet tubing is the difference between me being alive or not. (However, a shameless plug is always a good idea - God bless the makers of my Medtronic shunt, which has been functioning now for more than 5 years!)

And so I approach yet another day of mixed emotions.  It won't hit until about an hour after the craziness is over, so tomorrow sometime around 1:00, there will be a meltdown.  I can guarantee it.  It will be a meltdown of exhaustion, relief, sadness, gratitude, and more, and even though I can feel it is coming, I won't stop it because I think experiences like this are good for the soul to test us and help us come back to center.

Please have happy thoughts, warm wishes, and fond prayers on our behalf today and tomorrow.  Come out and join us at Sugarhouse Park (Big Field Pavilion) if you have time.  If you can't make it to the park, you can sign up as a virtual walker and walk a 5k wherever you are tomorrow on my behalf - which I must admit, would be very cool.  Or, you are welcome to make a donation (and/or help raise money).  All of these things can be accomplished through visiting our website at www.walk4hydro.kintera.org/SLC.

There are over one million Americans with hydrocephalus so as we at the Hydrocephalus Association say.....there are a million reasons to walk!  Let's go out together and help find a cure!