The tragic story of Maddie Spohr has been making the rounds online, and it's one about which I have been conspicuously silent. Better writers than myself have written about Maddie and the unique role that social media has played in her story getting the attention that it deserves, so I'm not going to add much further, except of course to explain why I haven't had anything to say about it until now.
Quite simply, it's not a topic I can think on at great length before my mind begins to feed on itself. Losing a child is one of the very few topics that I would classify as unthinkable.
The other night (and here's where you get to judge me a little), Julie and I were watching Grey's Anatomy together. We watch each other's shows together sometimes. Julie's finally off the hook with Battlestar Galactica, alas for my Friday nights, but I still join her for American Idol (which we both mock mercilessly, as if we ourselves aren't sitting there watching it along with everyone else) and Grey's Anatomy. I don't want to like it, and there's plenty about the show I don't care for, but there I am on the couch with Julie every week. It's sort of pathetic. BSG really has left a big hole in my tv heart.
(Having said that, if you really need a Grey's Anatomy SPOILER ALERT at this point, you are more pathetic than I, and I'm glad you exist in the world.)
Last week's episode included the story of a terminally ill little girl and her desperate father, a man trying so hard to find a miracle cure for his daughter that he comes very close to missing her final moments. "This next part, she needs her daddy for this part," says one of the characters, and as the little girl slips away, she does so in her father's arms as he comforts her with a description of Mexico, on the trip they'll never take together now. ''Just relax and we'll be there soon,' he says.
Well, you can imagine how I reacted to this. We both sat on the couch with tears in our eyes, staring for just a tentative moment into that void where parents usually refuse to even glance. I finally looked over at Julie and said, "You know if anything ever happened to Schuyler, I wouldn't make it."
"I know," was all she said.
I occasionally hear about what a strong father I am, simply because I've stood behind Schuyler and fought for her all this time, but it's false praise. It doesn't take strength to fight for Schuyler. The honest truth is that it's the easiest thing in the world to do. It's my pleasure and my privilege to do so. It's easy because it's a multiple choice question with only one answer, but more than that, as corny as it sounds, I get to participate in the life of the most amazing human being I've ever met, or will likely ever meet. I get to live with that person every day of my life. Who wouldn't sign on for that? That's not strength. That's selfish opportunity.
When I read about parents like Heather Spohr and Vicki Forman, I get a glimpse of what true strength really is. It takes strength to face the one thing that no parent should ever have to face. It takes strength to go to that funeral, and most of all it takes real strength to get out of bed the next morning, and the morning after that, and all the mornings that follow.
One day, hopefully not terribly soon, Schuyler will have to say goodbye to her poor sad father. If the universe proceeds the way it should, she'll say goodbye, and she'll put on a pretty dress and then she'll put me in a box or an urn and she'll give me back to the earth. It'll be a hard day for her, and I'm genuinely sorry to put her through that, but it'll be a sad page from The Way Things Are Supposed To Be.
To me, as weak as I am, the alternative is unthinkable.
Oh, Rob, this just kicked me hard in the gut today. Having witnessed several families losing their children (hey, you see a lot of awful stuff when you spent 7 months in the NICU), I can't even watch shows where that's a plot line.
ReplyDeleteWhat you wrote about fighting for Schuyler is exactly how I feel about my own child. The fighting is the easy part; the alternative? Can't.even.think.about.it.
Yeah. Just, yeah.
ReplyDeleteMy heart goes out to the Spohrs and Formans. You also should add Shana Myers of www.gorillabuns.com to your prayers. She lost her darling 4-month old son, Thalon, two weeks ago, probably due to SIDS (but that hasn't been confirmed). No parent should ever have to bury a child. I don't know where these people are finding the strength to move forward. Thank you for the beautifully written post, which captures perfectly a shared sentiment: that it's a "privilege and a pleasure" to advocate on behalf of our broken children. That's the truth. And these unspeakable losses hammer it home to me everyday.
ReplyDeleteThere are tears streaming down my face.
ReplyDeleteI get this.
Having lost my own daughter during labor, my wishes were flipped opposite yours. I wish I had the opportunity - if even for a few hours - to have been able to fight for her. It took me a very long time to get past that anger for never being given that chance.
We'd like to think we can't go on. For years I was certain I hadn't, I was just a being - existing in some cruel limbo.
I won't get into how I think we're handed just what we can handle and given the opportunities to make a difference in the process. I'm not exactly sure how I feel about that, even though a deeper part of me subsists on it because that's my crutch. Your gift is your creative, inspiring voice. And Schuyler. And Julie.
Gifts that keep giving.
I thank you for that.
I sure couldn't have written what you wrote. I can barely think it. You are very strong. I read your book, and then found your blog, and through your blog, I found Vicki Forman's blog and so on. The most recent episode of Grey's was so hard to take that I might give up watching it altogether, much like I gave up on ER years ago.
ReplyDeleteI heard it once said that when you have children, you are essentially letting your heart run around outside of your body. That's probably the closest analogy that can describe how I feel about my kiddos.
Thanks, Laura
God forbid that anything should happen to Schuyler, but if it does, you will find strength you didn't realize you had. I never thought I could survive the death of a child, yet I've survived the death of one, and then three years later a second. It was -- and still is -- the most painful thing I've ever had to go through, but the human body and mind are amazing. It obviously changes you forever, you don't want to go on, but you do. Somehow you do.
ReplyDeleteI saw that episode, too, and cried like a baby. Then I went upstairs, afraid to close my eyes to sleep, lest something should happen to my little daughter. Like you, I can't fathom what life would be like without her.
ReplyDeleteWell said, friend.
ReplyDeleteI'm with you. That story line had me crying like a baby. I cannot even imagine.
ReplyDeleteI, too, watched that episode, and I, too, cried...argh. I have the same misgivings you do about watching Grey's...keep threatening to remove it from the dvr list, but haven't done it yet. It was so sad.....I tried to be tough and act like it didn't bother me, but that was no good.
ReplyDeletePretty much what Kathie said - I wish I could have had something, anything with my son that was tangible, that I could have fought for, that I could have now to remember. Very timely, as I am coming up on his first birthday next week.
ReplyDeleteIt is wrong, and it is cruel, and it should never, ever happen. And you won't make it with yourself intact, bit I have enough confidence that you would make it, if only to continue what you have already started - Schuyler's (and your) legacy.
You get out of bed. You just do. I don't know what else to say. Thank you for this lovely tribute to parents everywhere.
ReplyDeleteThank you for posting this.
ReplyDeleteI lost a son and it always helps to hear about those who appreciate their children even more when they hear about loss.
Too many people close to me treat their kids like junk. I don't know how they can after witnessing what we've been through. It is so difficult to watch. I would gladly take their kids and raise them as my own. Perhaps one day I will have one of my own but until then I take heart.
Anyhow Thank You. Great Post.
I too cried over Greys, but also as it was so close to home. My son is in a class of 7 kids, all who are non-verbal. One of the 7 kids passed away two weeks ago. There are no words to explain to my son that his friend won't be back and no words to offer her parents, but I cry for them every day and live with permanent fingers crossed that the unthinkable never hits any closer to home.
ReplyDeleteOh, yes. And it's refreshing to read this -- original, actually and hits the mark.
ReplyDeleteMe too, Rob. I'm nowhere near, not anywhere NEAR near, as proper and dedicated a parent as you are, but that would destroy me.
ReplyDeleteI can't imagine this, either, and am extremely grateful right now that I don't watch Grey's Anatomy. But I've seen these brave parents, like Vicki, who put one foot in front of the other and I simply marvel at it. This is a beautiful post.
ReplyDeleteexactly
ReplyDeleteThe greatest of all is being a parent/teacher to a child with special needs. My son being an only child as well as Schuyler and me being an "older" parent, that is a huge fear sometimes wondering what we are going to do when they are no longer in need of us. Lets just stay unrealistic and hope death only happens on TV. Keep being the silly man who gets to love, support, fight and teach that fabulous child you get to call your very own. I live each day loving Evan in hopes they find the cure soon!!!!! Keep going Rob and Julie, you are a true inspiration. I look to you as my coach as I prepare my special book.
ReplyDeleteA friend of mine from growing up has been fighting the battle against testicular cancer for 5 years now. He's 27 years old, with a young wife, 24. I watch as his parents do all they can and send him all over the U.S. to find an answer, and now his body just isn't up for fighting anymore.
ReplyDeleteJust as the father holds his little girl in the episode, I watch as his parents hold him and his wife in their arms... just hold them. It doesn't ever get any easier with any age. I NEVER thought he would lose the battle, such a strong young man ready to conquer the world, and to be taken down with this disease is only heartbreaking, and like you said... the unthinkable. Keep the Gatlin family in your thoughts for the next couple of weeks while they go through those unthinkable days.
let's not think of such a thing.
ReplyDeleteOh Rob. You don't know how it will be for her, that day that will surely come, hopefully a long time from now. You don't know. Neither does she, and that's a great blessing and a terrible sadness.
ReplyDeleteI am reading this after just walking by my husband's office and making fun of a melt down my 6 year old had over not catching any fireflies over the weekend. It makes me feel almost guilty for saying some of the flip "funny" things that I do... I followed the Spohrs and they were amazing parents. Maddie was a very lucky little girl. My heart just aches.
ReplyDeleteThe story of Maddie Spohr has consumed my mind for the better part of the month. I agree a million percent with the sentiment in your post.
ReplyDelete