ALS Walk for Life: In Honor of Uncle Chip

What is ALS?

ALS is a progressive, degenerative disease affecting motor neurons. Motor neurons are specialized nerve cells that carry impulses from the brain to the muscles by way of the brainstem and the spinal cord. The muscles then move in response to these impulses.

In ALS, motor neurons gradually cease functioning and die. As this happens, the muscle tissues waste away because no movement is being stimulated. This results in gradually worsening muscle weakness, atrophy and often spasticity. Only the motor neurons are affected. Other nerve cells, such as sensory neurons that bring information from sense organs to the brain, remain healthy.

From my husband, Christopher  – 

ALS is a fucking monster. Physical paralysis in slow motion while the brain remains intact.  Fucking.  Monster.

I vaguely knew all of this before 2013.  But nothing quite prepares you for the real cruelty until someone you love is diagnosed.  Especially when that someone is as important as my Uncle Chip is to me.    A little background for you.  My family is very big and very close.  (So big that Katy, who is from a teeny tiny little family, needed some time to adjust to the dynamics of a large, boisterous family like mine.  She now fits in perfectly, by the way.)  One of my younger cousins made an astute observation recently.  He said that in our family our cousins are closer to siblings while our aunts and uncles have the capacity to act as surrogate parents.  I couldn’t agree more.

My parents are truly great.  But from the time I was a little boy, my Uncle Chip was there, filling in some of the gaps that may have been missed.  He taught me that it was okay for a man to show affection.  He taught me how to fight fair.  And he also taught me that you can’t always win, even if you do fight fair.  Let’s just say that I was on the receiving end of some sports related beat-downs when I was a kid.

My Uncle married my terrific aunt and they’ve raised two awesome kids.  And amazingly, he still made me feel important.  Special.  So it took me by surprise when, one night after he was diagnosed, I had the following exchange with my cousin, his son.  I told him how fortunate I felt to have such a good relationship with his dad.  And my cousin told me that what I didn’t understand was that there were A LOT of people who felt exactly the same way I did.

My uncle was a volunteer at his church.  For many years he took kids to do missionary work around the country, cleaning, building, helping.  And through those years, he had a profound effect.  I heard so many stories at the wake and funeral testifying to my uncle’s gift with kids.  So here’s this guy who has his plate full with his own family, and he’s taking time to let other kids in his community know that they have talents, they have worth…that they’re special too.  It speaks volumes about the man.

I’m not usually a guy who feels comfortable asking for things (or writing something for Katy’s blog), but for my uncle, I’ll make an exception.  My family is participating in the Les Turner ALS Walk for the third year.  And heartbreakingly, this will be the first year we will do it without my Uncle Chip.  So my ask is this.  Please donate to the Les Turner ALS Foundation.  It makes me sick to my stomach to think my uncle couldn’t get on the floor and play with my children like he wanted to the past two years.  Perhaps your donation helps fund the research breakthrough that helps the next Uncle Chip.   I know that he’d do the same for for you.

——–

We found out that my husband’s beloved HEALTHY Uncle Chip had ALS while I was in the hospital giving birth to our twins 2 and a half years ago, January 2013.  We were overjoyed and simultaneously mortified because he had, in essence, been handed a death sentence.

Uncle Chip died last month.  That was a 2 and a half year run living with ALS ravaging his body if you keep track of how old my babies are.

The correlation of new life and life leaving us all at once has escaped no one in our family.  All Chip most wanted to do was to get down on the floor and play with our babies, and he never could.  Not once.  

PicMonkey Collage

There is not a cure.  YET.  There is no way back to health.  YET.  There is no getting back all that is lost so quickly, so brutally, so cruelly and without mercy.  Mobility, agility, control.  All gone.

Because we live in Chicago the Les Turner ALS Foundation has been extremely important for Uncle Chip and his family.

Walk_for_Life_lockup

Donate now RIGHT HERE to Team Move Those Hips for Chip in the ALS Walk for Life.  Right there, where it’s highlighted.  Any amount is so appreciated and will go to doing great things toward something so awful. We know you have plenty to spend your money on, and we’re so appreciative of you giving anything you can.

We do this ALS Walk for Life in honor of Uncle Chip.  He’s done it with us the last two years and this year will be incredibly sad.  But just as he always wanted, it will be filled with funny stories and remembrances of what a great man he was.

My husband’s family is big and full of love and support and jabs. It’s what they do.  But you never ever question how much you are loved in this family.  The hugs are as strong as the laughter and the loyalty. I’m incredibly impressed and moved and in awe of how they’ve all handled this tragedy together.

I’ve watched my husband open himself up and feel his feelings in ways I’ve never witnessed and I am so incredibly proud of him.

Chip let every single person he loved know exactly how he felt about them before he left us.  There is not one among us left wondering how he felt about us.  That is some kind of a man to make sure we would all be secure in that knowledge.

I could write forever about Chip and this family, but instead I will share a letter I wrote him right before he died. I knew I wouldn’t see him again.

Dear Chip,

I just want you to know a few things.  I want you to know that I adore you.  I want you to know that you’ve impacted my life in so many ways that it’s hard to name them all.

From the first minute I met my husband, he would talk about you.  He would talk about what a great uncle you are and what a great dad and how funny and smart and cool you are.  My husband doesn’t like many people.  You are one of the few he really really likes.

Every time I’ve been around you, you make me feel special.  Like I’m really wanted and appreciated and loved and welcome.  Like I’m in on the joke.  I thank you forever for that.

We found out you were sick as I was giving birth to my babies.  What a cruel turn of events.  Each and every time you’ve been with us and been around my babies, you’ve doted and tried to make them feel at ease. You made yourself less than comfortable on occasion for their sake.  Don’t think we didn’t notice.

To their credit, they have never once asked what your breathing apparatus or wheelchair or anything is, and if you know my boy you know he asks about EVERYTHING.  They just know you are Uncle Chip and accept you as you are.  I love that.

After I had the babies I remember you specifically telling me how great I looked and what a great job I was doing as a mom.  It meant everything to me.  It still does.  There’s that kindness of yours.

You’ve given us a new love of birds and butterflies and I’m grateful as I really didn’t know. They will always have significance to us because of you.  For the rest of our lives when we see butterflies we will think of you.

I adore you, Chip.  I know you and I have fought similar demons and I respect the hell out of you.  Without ever outright talking about it, we understand.

To say I will miss you is just not adequate.  I will miss the hell out of you.  We all will.  I am so thankful I got to share in the light you spread around the world of Chip.  It is far and wide, your light, as so many will attest to, but I feel closer.  I feel special to you and that’s the gift you give people in your life.  You make everybody feel special, when really, it’s YOU who are the most incredible.

I love you forever Chip.  You are brave and kind and smart and so funny.  All the best qualities in a person.  We will always have you with us.  I promise.

I hope you find freedom from this pain that you in no way asked for or deserved and we will carry you with us always.  As you’ve carried us.

Thank you for everything.

Donate now RIGHT HERE to Team Move Those Hips for Chip in the ALS Walk for Life.  Right there, where it’s highlighted.  Any amount is so appreciated and will go to doing great things toward something so awful. We know you have plenty to spend your money on, and we’re so appreciative of you giving anything you can.

See also: The Butterfly the Finch and the Dragonfly

 

Thanks so much for reading!  If you like what you read, I encourage you to share the love by sharing this post. 

To get my blog delivered directly to your inbox, type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.