This journey with our girl has been a family one. There are four of us here at Chez Lenaburg. Jerry, me, PicklePie and her big brother Jonathan or J-man as we affectionately call him. He came to me yesterday and asked if he could write a piece for the blog on how he feels about everything that is happening right now. After all, he has been a witness to all Courtney has been through from the beginning.
I don't talk about J-man a lot in this space because he has asked me not to in the past. Being in high school, then college you can imagine how un-cool being featured on his mother's blog would be. Now he is almost 25 and wanted to take the opportunity to talk about his sister and how much he loves her, how much she has shaped who he has become, all without a word being spoken between them.
So without further ado, I give you my first born, the young man who made me a mother. Courtney's big brother, Jonathan. He is a man of deep emotions and a very gentle heart. He has been through a lot, witnessing a saint in the making. Jerry and I could not be more proud of who he is becoming, a man of honor and Godly character. Courtney is the luckiest little sister on the planet.
These are his words and his alone...I am humbled that he is mine...
It’s 2 a.m., and I’m standing in front of a person that, by all rights, should be dead.
I watch her chest rise and fall, rise and fall, as she breathes in her sleep. A simple task to many of us; but I’ve seen that same chest struggle with something so mundane, something we never think about.
And it hurts. It hurts so much to watch it. I want to scream and rage and do something to help her. To give her something she never had: a life unshackled.
It’s been this way all her life. I remember walking through the halls of the hospital with my grandparents, so eager, so excited to see her. And when I held her in my arms, something sparked. I imagined the things we’d do, the future we’d have. Me, and my sis.
Sometimes it’s hard to remember what that feels like.
My name’s Jonathan; for those who don’t know, I’m Courtney’s big brother. I’m the person no one really talks about in all this, but I’ve been there from the beginning. I talked about Courtney once on this blog: at the end of her story, as written by our mom. Even though I have asked Mom to not talk about me on the blog in the past, I felt that, with recent events, I should step in and offer my full perspective on “the Pickle”, as she’s known in our house.
Life’s difficult when you have a mentally and physically challenged sibling. Things never seem to flow. I mean, there are good days and there are bad days; but they’re not the good and bad days other families have. A bad day for a “normal” family is getting a bad grade on a test, or breaking curfew, having plumbing problems in the house. A bad day for us involves hospital trips, cancelled plans, and a LOT of praying.
When I was little, I was what you might call a “spoiled brat”. Now, I know that my folks did the best they could under the circumstances, but it was hard to understand what was happening when you’re 6. I did eventually get over myself, but it took years to accept that this was how life was in the Lenaburg household. Even when my faith was shaken to the core when Courtney wasn’t healed in Lourdes like we thought she would be, I understood that God had a reason for what he did. I didn’t like it, but it wasn’t my plan: it was His.
It remains his plan and his alone. We are just along for the ride.
Even through all that, one thing was clear: none of this was Courtney’s fault. She was not to blame. I have never hated my sister. Not for one second. I have hated her circumstances as “unfair” and “wrong”, been frustrated at what she couldn’t do, what she has lost over these many years. But it was never her fault. I’ve heard too many stories of abusive families who see their disabled children as the cause of their problems. These people disgust me. It feels wrong- evil, even- to look at her and see her as anything but a beautiful person, deserving love and respect. She laughs, she cries, she tries to trip me any chance she gets- she is her own person with her own personality. As my Mom says “She is a spicy little number with a mind of her own”.
I have been tempted in the past to ignore her, to think of her as “less than”. I have never given into those thoughts. Not for one second.
But that doesn’t make it any less easy to deal with. I remember one time in elementary school; I punched a kid square in the face, because he called her a “retard”. I lashed out at a guy in high school who heard Courtney having a seizure, and though it was someone having a drug trip. So many people refuse to understand what I have always known-there is a person locked in there, and she is suffering.
No doubt you’ve heard about all the changes coming from Mom: the life expectancy, the hospice care, the fact she can’t eat food by mouth anymore (as a Lenaburg, let me tell you, that hurts me most of all). She has, on previous occasions, beaten every record and expectation of her. She was supposed to die at 6 months. Then 1 year. Then 3 years. 5. 13. 18. 21. Time and again, she has shown them all up. Sure, there was one time she needed an Irish yell in her face by Grandpa Green (you know, guy quoted in this blogs header. Good man. Mean chess player.). But she has proven to be a fighter, through and through.
This time is different, though. This time, we are dealing with seizures we don’t know anything about and that the meds don’t stop, and her body has been tapped out. And you know what the worst part is?
The worst part is, I can’t do a damn thing about it.
I’ve never professed to be an expert on seizures, or neurology. I leave that to the people who are far more educated than I. But I do know my sister. And she is tired. We’re all tired. We’ve been at this game for over 20 years. And yet, life moves on. She still needs care and love every single day, as we all do. And we have to watch every time she seizes, watch the fear in her eyes, and hope that this time isn’t the last. My parents have come to terms with it. I honestly thought I had, too.
And then I stood there, watching this frail body that had beaten every odd, destroyed every statistic, had baffled doctor after doctor, was a hero to some, and inspiration to many. Watched as she slept peacefully, her body hoping to get some rest from the war it was waging with itself. A war it will not win.
And it struck me how much I didn’t want to let go in that moment.
Now, don’t misunderstand me. When the time comes, I will be joyful that she has been freed from the shackles of her body. That she can run to God, never having to fear anything again. But I didn’t want that to happen yet.
I want the woman I marry to meet her, and know what my sister means to me. I want my children to know their Aunt Courtney from more than pictures and videos. I guess I need to let that go since I am not even dating anyone right now.
I don’t want to lose that part of me she holds. It's the best part of me.
Mom said the other day that Courtney is my first love, and you know what? She's right. Courtney has changed my life so dramatically without saying a word. Without her, I’m sure I would be who I am now. Whether that’s good or bad is up for debate, but know this: I do not regret being her big brother for a minute. I am proud to be her big bro, and I will fight for her and with her, no matter what the circumstance.
It's fun to just take her for a stroll around the mall when Mom’s sale shopping, and just talk to her. To watch her smile as I talk about the newest video game I’ve been playing, or about the anime I watch, or about the latest movies I've seen. To watch the people around us give her funny looks, and to just smile right back at ‘em, knowing I have the better shopping partner. I will cherish memories like that when she’s gone. I will always remember that bucktoothed grin, the guffaws, the Chewbacca howl and the dopey expression on her face as she sits next to Dad on the couch.
I know the pain that will come from being left behind when she goes to Heaven will be gut wrenching. I know that Mom, Dad and I will rely on each other and God to make it through the really dark days. Even though that is coming, I would not change one thing. I love Courtney more today than the day she was born. She is the bravest, strongest person I have ever known, and stubborn as hell.
Heaven better get ready because Courtney’s gonna to bust a move. I bet her dance card os going to be full.
**way's to help with Courtney's medical costs/daily care expenses**
We Love the Lenaburgs - Team Courtney Fundraiser
Labels: Courtney's World