January 2016 – Visits with Neil…

us at penguins gameOne night last week Abby lit a scented candle in the house – “I wanted it to smell like a nice fall day,” she said.  Well that candle burned for 15 hours before I realized we had an open flame in the house all night long.  This is the kind of thing that would make Neil’s head explode.  It was a habit of his to check all the doors and windows, lights and stoves before bedtime to make sure the house was secure for us.  I would make fun of him because, as I’ve said  and he would proudly agree, he was a “control enthusiast” at best.  But he would argue he had to do it because in the 25 years we were together I actually did leave the stove on (low flame, mind you!).  Twice.  And if it wasn’t for him, blah blah blah.  So it’s little moments like this that feel like a visit with my precious husband.  Because he would have caught my oversight, we would have argued, then we would have laughed, and then I would have admitted he was right, and he would have more reason to check everything.  And eventually he would have told his sister, brothers and closest friends a funny and exaggerated story about his need to keep tabs on all of us or the house would burn down.   It would have been a “moment”.  I miss those.

People have been so very supportive with their encouragement since Neil left.  The handwritten notes, invitations to outings, small tokens for the kids, offers to help around the house, stories about Neil we hadn’t heard, inspirational writings, even forgiveness when I haven’t been present or the friend I need to be.  The experience of losing Neil has been heartbreaking on so many levels, and it has been marked by a thousand different kindnesses directed at our family.  People are amazing.  Thank you from the bottom of my heart for helping us to move through this with your gracious support along the way.

The holidays and kids’ January birthdays were a hurdle – these being our first without Neil.  Thank goodness for family, friends and too much to do – which threw us into lock-step when grief could have easily won the day.  But, truthfully, the last eight weeks haven’t been any harder than the last ten months.  I can walk around my house at any hour and visit the special memories, and feel a sense of loss over the dreams we had for raising our family here.  Even walking up the stairs to the kids rooms or down the stairs to our basement I can transport back to the moment I told Neil it was time to go to the hospital because Patrick was coming, or the “minute-to-win-it” games he would invent with Abby.  Looking out into the yard on snowy mornings I visit those summer nights when he would pitch a tent every July and have sleepouts in the back yard complete with wiffle ball matches, tree swinging all the way to the clouds, and smores.  Of course there were times over the holidays that were sad – but mostly I just invite those moments in like a friend because I can feel him with us then.  It’s a little trick I’ve learned… I lean in to the sad moments when they visit, so when happy and carefree moments are here, they are not laced with guilt.  Every emotion gets equal air time.  Obviously I don’t have a therapist to give me more eloquent lessons to share… this is just my little take on things for what it’s worth.

Did you hear about the Fox Chapel Area School District fundraisers?  More than $70k was raised through efforts like raffles, pie throwing, boys fashion shows, principals dressing up like Elvis, and pizza sales – culminating in the televised telethon December 23rd.  It was such fun to work with the kids at each school and see their creative determination to support ALS, and such a great way to wrap up a wonderful year of events. 

Since we started LiveLikeLou in March 2012 we have raised more than $2.5 million!  Of that $870k has gone directly to research to find a therapy or cure for ALS and $165k in grants to patients and their children in Western Pennsylvania.   Most of our expenses have been underwritten by corporate sponsorships or individual donations and we do not pay rent or salaries.  Almost entirely, our funds are raised in Western Pennsylvania and spent in Western Pennsylvania.  Our goal is to meet our commitment of $2.5 million for the LiveLikeLou Center for ALS Research at The University of Pittsburgh’s Brain Institute, and to build a long-term fund at The Pittsburgh Foundation restricted to raising awareness of ALS and providing much-needed goods, services and care to ALS patients and their kids who live in the region – long into the future.  Last year we provided funds for ALS patients to purchase communication and mobility devices, and Iron Horse Awards for their kids for activities like summer camps, sports lessons, college scholarships and holiday meals.  Because living with ALS is excruciatingly expensive, and Neil helped us all to see that caring for these families is rewarding and a wonderful way to honor his life. 

In the past two weeks I have heard from several people with plans to volunteer and lead different events to raise money for LiveLikeLou in 2016 (see them all here).  It will be another busy year, in a good way.  Cleveland Brothers Rebound Strong events, another all-night Homer’s Odyssey reading, “DOW”, the LiveLikeLou bike ride, Donut Dash and Fox Chapel Telethon are all planned again for 2016…. and a new middle-school 5k, hockey tournament and the Anne Lewis Humanitarian and Advocacy Award Gala are also on the calendar.  Holy cow people are amazing!  And creative!  Compassionate!  There simply isn’t enough room on this blog to recount the generosity we have seen.  I am reminded of the quote by Amelia Earhart…”The most difficult thing is the decision to act, the rest is merely tenacity.”  We have some very tenacious people in our lives determined to leave ALS better than we found it.  Neil would be proud.  

With love and gratitude for every single day…

Suzanne