We are Family

This is going to be long. Its going to be real. Its going to sound like sob story or an attempt at eliciting sympathy and I don’t want it to be any of that, I want it to be a witness to love and strength and beauty in the midst of the muck of life. Its going to be what it is because sometimes you just feel the need to share… and a long time ago life taught me not to pass such moments by…
 
Yesterday afternoon I was texting with my dad – we text our way through EVERY Cub game because that’s how we roll from 1,500 miles apart.
 
Along the way my dad shares that my sister Sally is having a good day. Actually was able to get up out of bed (a long while back my parent’s turned their bedroom into what basically amounts to a really nice hospital room for my sister and they moved upstairs into the guest bedroom) and come out and eat a fudgsicle and seemed to be recovering from another bout of infections.
 
Then 9 pm roles around and they get a call from the hospital. Get back in here right away… lab work came back. ‘Horrible infection. We got get this for real for real and right now.’
 
The night is spent in the ER and then getting room. Another round of hospital visits, another round of doctors, and hopefully… hopefully… on the other end of it? Maybe another week of respite before it all repeats.
 
My sister texts me late that night. “One of these infections is going to kill me.”
 
Yes. One of these days, one of these is going to do what so many other damn horrible things have failed to do…. but not yet. Not this one. We got this one. Love you.
 
 
What else do you say?
 
Its true. And we long sense past the stage where we lie to each other to make it more comfortable.
 
Today? Its my parents anniversary. 51 years. They will spend it going back and forth to the hospital. Not the retirement they expected. Sally will spend it on the other side of the ocean from her husband and kids. Not the life she wanted.
 
But it is the life we have and we will make of it what we can. That is what my sister teaches me daily. That is one of the great gifts my parents have given me. We lament, we do not get stuck. We are real, we are there for each other, and we find the joke and the laughter in whatever life may come.
 
 
I don’t share this because I want your sympathy (not for me and not even for them). (Though if you are the praying type… a prayer is welcome… and good thoughts of any kind for any other, presence, a hand now and then, a visit, its all appreciated – though we struggle to ask for such things life has made us a bit better at this by necessity.)
 
I share it because I’m amazed day after day of the quiet (okay she is loud… let’s call it the persistent strength) of my sister whose life hasn’t known a day of normal in the last 12 years… maybe more. And who has beat every prediction for how long she will muster out another day of life. Who has fought and struggled and persevered… and all for love of her family – to see another highlight of her daughter Caleigh riding her horse, or son Callum playing rugby (they are Scottish… like, live in Scotland Scottish) and mountain biking and overcoming the same genetic crap that she has overcome day after day for… well for what seem like forever. For one more time when they can go to the backyard for a game of catch.
 
I share it because I am amazed day after day of the fragile strength of my parents. (they are fragile. And they are strong… so damn strong) Watching your child’s dreams come to… what life has left of dreams… Changing their house, their life, their every day to support… all of us. Because there isn’t a day that goes by that I don’t feel supported as well as my sister Sally, and Karen who also struggles mightily as well with that same disease, and Robin my eldest sister who does the work of all 3 of us combined in helping out because that is what eldest siblings do. My parents long ago set the standard for me on what it is to be leaders, disciples, and family. (yes, Stitch, ohana means family and nobody gets left behind) and they taught me that everyone is family. And frankly? Its why I push and wrangle and hope so hard to create families like that wherever I may be.. families not bound by blood but by a love we choose to share for each other, with each other.
 
That is really why I share this I guess. Because life is precious, life with others better yet. And life will give you more than you can bear.
 
It will.
 
Don’t let anyone tell you otherwise. And don’t go through it alone.
 
Because life will give you more than you can bear but it will also give you the people to help you bear it. Sally and Karen teach me that daily. My mom and dad made it the bedrock of my life. And my sister Robin, who is probably driving the hour from her house to go help my parents even now, reinforces that message daily.
 
And I’m on the outside looking in… so it means I cannot do anything but love and pray and speak. And speak is what I do. So I share that I love my family.. for the way it doesn’t let anyone get left behind.
 
And you are my family too. Love you all.
 
#mito #mitochondrialdisease
#umdf #energyforlife
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About Andrew Kukla

I am the proud father of four wonderful children, loving husband to Caroline, brother to three mostly wonderful sisters, and son of two parents that gifted me with a foundation of love and freedom. I also am a Presbyterian pastor and former philosophy major with a love of too many words (written with many grammatical errors and parenthetic thoughts), Soren Kierkegaard, and reflections on living a life of discipleship that is open to all the challenges, ups and downs, brokenness and grace, of a chaotic and wonderful life founded upon the love of God for all of creation.

Posted on September 4, 2016, in Uncategorized. Bookmark the permalink. 1 Comment.

  1. We are with you…………………………..

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