I haven’t had a post all week. I’ve been in a funk of sorts. My beautiful daughter has had Lupus for most of her life – one that we’ve been struggling this past year to keep under control. It’s one of those chronic disease that you have to manage for the rest of you life. We haven’t been managing it very well this year.
These last two weeks, she’s having a big flare-up, one, which has us all scared.
This is my beautiful, seventeen year old daughter:
I love this little girl. She is my heart. She is my love.
Lupus has robbed her of so much. And through it all, she has had the best attitude. She’s bright, sunny, happy and cheerful. If she didn’t tell you, you’d never think that such a terrible disease lived just under the surface of the happy, beautiful sprite you see in front of you.
She hasn’t felt 100% all summer, and two weeks ago, she started to feel even worse. The arthritis caused by her Lupus had gotten really bad – so bad that she had trouble walking, taking the stairs up to her room was difficult, and holding a pen to write her thoughts was agony – thank god for ipads! It makes writing down your thoughts easy with just a light touch of your finger. The things that we take for granted, like holding a pencil, using a keyboard, buttoning your shirt – become very difficult for her when her disease spins out of control.
She’s been dealing with Lupus since she was five years old. And as I said earlier, it has robbed so much from her. She’s had to be much more mature for her age while deep down inside, she just wants to be a little girl, like any other.
I did NOT know that I have been in a perpetual state of denial about her Lupus since the beginning. I mean, YES, I have dealt with it. I managed it. I have fought with it. But, never, never, never, not even for a moment did I look – really LOOK, at what it had done and I have never even tried to imagine a life without it. It has robbed us so quickly and swiftly and uncaringly that I have never even dared to think WHAT IF. Never even tried to imagine.
Until the other day, when my daughter looked at me and for the first time, she said OUT LOUD, to me, and to the world in general:
My life would be so different without this Lupus. I could have been a normal little girl. I could be a normal teenager.
And for the first time EVER,
…in front of my daughter, all those pent of years of just taking a beating from this disease and never questioning it, my eyes teared up and I cried, big, fat, silent tears. And she said to me,
Mommy, please don’t cry. It’s nothing to cry about.
I am usually the positive person in every situation.
I am usually the cheerleader in every situation.
I am usually the problem solver in every situation.
I am usually the “clear thinker” in every situation.
I am usually the strong person in every situation.
I am usually the care giver in every situation.
And with her Lupus, it is so hard to be all those things. For her, for me, for my family, I must be all those things. And yet, at that moment, it was trying to rob me of my ability to be all these things to the ones I love. And you know what? I’m tired of taking this beating!
I am a firm believer of manifest destiny. You know, the school of thought that says YOU can manifest your OWN destiny? I’m a HUGE fan, and a HUGE believer, as every other part of my life, I have always taken the bull by the horns, taken control of the situation and made my life what I want it to be.
But, with her Lupus, from the moment we discovered it, I accepted it. I never even dared to dream of a day that it would not affect her. I always thought that having “those kind of thoughts” would prevent me from concentrating on the task at hand – which was, as it is with every parent – to take care. To take care of it. I always thought that having “those kinds of thoughts” would make me feel
And when my daughter said those words, out loud – “My life would be so different without this Lupus,” I DID feel sad. I DID feel depressed. I DID feel regret. But you know what else I felt?
I felt angry. Angry that I had not dared to look this bully in the eyes or try to fight with it with all my heart and soul. I had only been fighting it with my actions and in this physical world. I had let it defeat me, my heart and my soul, from Day 1.I had accepted its place in our lives. After processing through all my thoughts, feelings and anger this week, I’ve decided that:
I’m now OVER it.
I’m no longer accepting it in my life.
I will no longer accept it in my daughter’s life.
I WILL imagine a life without it.
I will manifest the future that I WANT.
And I truly believe that I CAN, that she CAN, and that we WILL.
I’m going to fight it with my heart and my soul. After all, these are the best parts of us, aren’t they?
Do you believe that we are all connected?
I put this out in the blogosphere, so that you can also help us. I ask for your positive thoughts, your prayers and your imagination in dreaming up a life where we – all of us, can look our bullies* in the eye and say:
I will no longer accept you in MY life.
KAPOW! Take THAT Lupus. You are dead to me.
Tomorrow, we are at the hospital, for more tests to see how much havoc this flare-up has caused this time, and then to figure out a treatment plan to get this under control. I will be there to love and support my little girl. And I will be there dreaming up a new life and a new future for her. PS – I’m DREAMING BIG.
Thank you for reading. It means more to me than you know.
Mother, in Minneapolis
*bullies can be anything, not just Lupus. Bullies can be cancer or leukemia or diabetes or heart disease, or anything in your life that you or a loved one is battling.
I’m linking up to THINGS I’M LOVING. Through it all, even this, I’m LOVING that you we all support each other. Thank you so much for the encouraging words – it means so much to me!