Sylvia is my 8 year old daughter. She's a girl on a mission 95% of the time! If she's not creating some type of artwork, she's practicing back bends and cartwheels or trying to dance like a more appropriate version of a "hoochie mama". It's hard to work your mojo when your mojo is 8 and your Mom would rather you dance like a lady. The thing about Sylvia is that she's all heart.
Everything she does is full throttle. I love that about her.
The other day, Sylvia came up to me with her ever-present pad of paper and asked me, "Mom, how do you start a fundraiser?" I have to admit I was only half listening at first. Then she said, "Mom, this is really important!" So I started really listening. "What is this fundraiser for?" I asked, and her answer caught me totally off-guard.
"I want to raise money so people don't have to have heart disease like you, Mom. I think Moms should be able to play with their kids and they shouldn't have to worry about their Moms dying. If I raise some money, they can get rid of it, right?"
She was 4 when my heart stopped. Half of her life I have lived with heart disease. I really didn't realize that she worries about me dying. That's the kind of heart Sylvia has. It's full of love for me, the other moms, and all the kids who have lost their moms to heart disease. She knows how cruel and crappy life can be when your mom's beta blockers make it hard for her to get off the couch. She's learned to accept that sometimes Mom just can't. It breaks my heart. She deserves the full Mom experience, and she's willing to do the work to make a difference.
Her timing was perfect, since the school was in the final days of their "Jump Rope for Heart" campaign. She jumps rope, people donate, and the money funds research via the American Heart Association. It's way easier than creating her "Cartwheels for Heart" fundraiser where people pledge money per cartwheel. I like her idea. We'll work on it. (She's really into cartwheels right now.)
Sylvia understands first hand what it is to live with heart disease in your family. She's jump-roping her little self silly to try to "get rid of it". It's very important to her heart that no one else lives in fear. She's blessed with a heart for others.
If you'd like to support her efforts, go to http://jumpmwa.kintera.org/sylviaswager
Showing posts with label heart. Show all posts
Showing posts with label heart. Show all posts
Tuesday, February 26, 2013
Monday, February 11, 2013
I Am What I Am....
Once upon a time I was a goofy crazy little child with chubby knees, big brown eyes, and a sense of adventure and imagination that never slowed down from the moment my eyes burst open until the minute I finally fell asleep. I wasn't a pretty little girl in frilly dresses, but if you needed to find a lizard or a snake, there was a good chance I might have a spare one in my pocket, or at least knew a good spot to find some.
If a food fight was needed in the school cafeteria, I was your girl! I wasn't afraid to go fishing with the boys, since I could bait my own hook AND take the fish off with no problem, but I wasn't dumb enough to bite the head off the fish to join Jimmy and Rusty's fishing club either. I may have been the brother MY brother always wanted...except I was a sister.
But by the grace of God I am what I am!
For a while, I was a very awkward band geek that could play the bass clarinet despite having a mouthful of braces, and a very large white-girl fro that my Mom swore was "adorable". (I have pictures. Don't make me share them.) I had this weird new body with no operators manual and no clue what to do with all these...curves... and emotions. So I covered them with T-shirts and jeans, and just kept being that crazy, goofy child inside, but knowing that I couldn't stay that little child broke my heart a little, and I needed something to ease that pain.
But by the grace of God I am what I am!
I didn't know those words then. I may have read them, but they didn't really speak to me like they do now.
Some time later, I awoke to find myself married with a couple of kids. "Worthless." "Ugly." "Ridiculous." When you hear them enough you begin to believe them. Turns out he has a problem with lying.
But by the grace of God I am what I am!
Then in another stop along the timeline of my life, I find myself surrounded by beautiful people, except they don't know their own worth. Like me, they're broken. "Queer." "Fag." "Homo." They've heard it all. They know you don't approve, so they put up a shell. Inside they are dying to know the truth, that they are wonderfully and beautifully made in the image and likeness of their Creator. Just like you. Just like me. My best friend wears a mustache to hide the scar on his lip where he was beaten in the face for trying to feel beautiful. I'd love to go back to that time and yell with them from the rooftops:
But by the grace of God I am what I am!
Through the times when a bottle was my friend, and the times when I had no joy left in my soul save the tiniest micro-dot of love. In the times when I was completely alone and scared and learning to care for myself again. As I nursed my wounded soul back to health and started looking, tentatively at first, into the mirror, I began to learn the truth about myself:
But by the grace of God I am what I am.
I spent a few minutes of "quality time" with the Creator when my heart stopped. Just long enough to feel the most perfect, complete, flawless, all-encompassing, forgiving, rejuvenating, renewing, joyful Love that ever existed. Love so intense in that one moment that it's enough to last forever!
Now I can hold my head high because I don't just think I'm loved. I KNOW that I am the beloved child of my doting Heavenly Parent! Lizards and perms and braces, and sadness and brokenness and all! Loved!
All that I was. All that I am. All that I will EVER be is a gift of grace from God.
...and his grace to me has not been ineffective..."- 1 Cor. 15
If a food fight was needed in the school cafeteria, I was your girl! I wasn't afraid to go fishing with the boys, since I could bait my own hook AND take the fish off with no problem, but I wasn't dumb enough to bite the head off the fish to join Jimmy and Rusty's fishing club either. I may have been the brother MY brother always wanted...except I was a sister.
But by the grace of God I am what I am!
For a while, I was a very awkward band geek that could play the bass clarinet despite having a mouthful of braces, and a very large white-girl fro that my Mom swore was "adorable". (I have pictures. Don't make me share them.) I had this weird new body with no operators manual and no clue what to do with all these...curves... and emotions. So I covered them with T-shirts and jeans, and just kept being that crazy, goofy child inside, but knowing that I couldn't stay that little child broke my heart a little, and I needed something to ease that pain.
But by the grace of God I am what I am!
I didn't know those words then. I may have read them, but they didn't really speak to me like they do now.
Some time later, I awoke to find myself married with a couple of kids. "Worthless." "Ugly." "Ridiculous." When you hear them enough you begin to believe them. Turns out he has a problem with lying.
But by the grace of God I am what I am!
Then in another stop along the timeline of my life, I find myself surrounded by beautiful people, except they don't know their own worth. Like me, they're broken. "Queer." "Fag." "Homo." They've heard it all. They know you don't approve, so they put up a shell. Inside they are dying to know the truth, that they are wonderfully and beautifully made in the image and likeness of their Creator. Just like you. Just like me. My best friend wears a mustache to hide the scar on his lip where he was beaten in the face for trying to feel beautiful. I'd love to go back to that time and yell with them from the rooftops:
But by the grace of God I am what I am!
Through the times when a bottle was my friend, and the times when I had no joy left in my soul save the tiniest micro-dot of love. In the times when I was completely alone and scared and learning to care for myself again. As I nursed my wounded soul back to health and started looking, tentatively at first, into the mirror, I began to learn the truth about myself:
But by the grace of God I am what I am.
I spent a few minutes of "quality time" with the Creator when my heart stopped. Just long enough to feel the most perfect, complete, flawless, all-encompassing, forgiving, rejuvenating, renewing, joyful Love that ever existed. Love so intense in that one moment that it's enough to last forever!
Now I can hold my head high because I don't just think I'm loved. I KNOW that I am the beloved child of my doting Heavenly Parent! Lizards and perms and braces, and sadness and brokenness and all! Loved!
All that I was. All that I am. All that I will EVER be is a gift of grace from God.
...and his grace to me has not been ineffective..."- 1 Cor. 15
Friday, January 25, 2013
Snowy, with a chance of prayers.
I'm looking out my bedroom window at the snow falling in soft puffs, cheerfully and quietly racing towards the ground.
They are like millions of prayers and kind thoughts all fluffy and pure covering the dark, scorched ground of a tragedy.
It's been snowing for a while now, and only a few dark spots of sadness remain. At first glance, all is well and light and pure in the world. Choose to see only that.
Hold on to the vision in white, made whole by the praying of friends and those who love you and don't know anything else to do for you. Don't seek out the dark patches where the broken pieces show through. It's too easy to be drawn into them by their stark contrast against the purity of love, joy and happiness.
The bare ground of sorrow will be covered by the billowy white softness of this snow until this season of coldness ends.
Soon, the warm rays of Divine Love will melt the snow of blessings into water so plentiful that we can't absorb it all. Kindness, like soft rains will gently soak away the hardness of cold ground that we've become. For a time, the murky mud of our sorrows seems to be everywhere. It sticks to our boots, dirties up our homes, and tracks along behind us everywhere we go.
As we allow these blessings to flow deeper within us, and we absorb the warmth of God's love, we are transformed into fertile soil where seeds of hope can find nourishment and flourish.
The ground always remains, but as time goes by it can't be seen through the colorful blooms and dense foliage of the garden we've allowed ourselves to become.
They are like millions of prayers and kind thoughts all fluffy and pure covering the dark, scorched ground of a tragedy.
It's been snowing for a while now, and only a few dark spots of sadness remain. At first glance, all is well and light and pure in the world. Choose to see only that.
Hold on to the vision in white, made whole by the praying of friends and those who love you and don't know anything else to do for you. Don't seek out the dark patches where the broken pieces show through. It's too easy to be drawn into them by their stark contrast against the purity of love, joy and happiness.
The bare ground of sorrow will be covered by the billowy white softness of this snow until this season of coldness ends.
Soon, the warm rays of Divine Love will melt the snow of blessings into water so plentiful that we can't absorb it all. Kindness, like soft rains will gently soak away the hardness of cold ground that we've become. For a time, the murky mud of our sorrows seems to be everywhere. It sticks to our boots, dirties up our homes, and tracks along behind us everywhere we go.
As we allow these blessings to flow deeper within us, and we absorb the warmth of God's love, we are transformed into fertile soil where seeds of hope can find nourishment and flourish.
The ground always remains, but as time goes by it can't be seen through the colorful blooms and dense foliage of the garden we've allowed ourselves to become.
Sunday, September 9, 2012
30 Things About MY Invisible (but NOT Imaginary) Illness!
1. The illness I live with is: Arrhythmia. My full diagnosis is "Ideopathic Ventricular Tachycardia/Ventricular Fibrillation which means we don't know why, but your heart goes too fast then stops!
2. I was diagnosed with it in the year: 2008, after my cardiac arrest.
3. But I had symptoms since: Well, the cardiac arrest was the first big symptom. Unmistakable, really. It was a really REALLY good symptom to have.
4. The biggest adjustment I’ve had to make is: to SLOW DOWN and RELAX!
5. Most people assume: I'm cured. There is treatment, and I'm doing very well, but I'm not cured.
6. The hardest part about mornings are: getting moving. But I've never been a morning person.
7. My favorite medical TV show is: House. I keep hoping a real-life House will show up and diagnose me with something I can just take an aspirin for and be all better. Then I would run a 5K, get skinny, and hit the talk show circuit. Then the Unicorns start flying me over the rainbows...but a girl can dream.
8. A gadget I couldn’t live without is: the Maximo VRII AICD that lives in my chest and shocks me when my rhythm gets too fast.
9. The hardest part about nights are: shutting down my mind as it races with thoughts and memories and fears about my heart. What if this is my last day? Have I lived it properly? Will my kids have good memories of me if this is it? Have I told everyone I love them. Would God be pleased to see me? Have I loved Luke well enough? Do my friends know how I feel about them? Have I apologized? Have I prayed?
10. Each day I take 13 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: do what I can to be healthy.
12. If I had to choose between an invisible illness or visible I would choose: Sometimes it would be better to be visible, but I don't like pity. It would have been better to have a visible disability than when I was on the wrong beta blockers. Mostly I looked (and felt) like I was on a bad drug trip, or having an extended "Woodstock-type" experience. It would have been nice for people to see that I was medicated and not just bizarre.
13. Regarding working and career: My heart event was the catalyst to becoming a published writer. I am thankful for my heart disease reminding me that if I die now, I take all my thoughts and stories and ideas with me. God's got lots of stories already, He wrote them all! No point in taking them all with me!
14. People would be surprised to know: how much control they REALLY have over their cardiac health.
15. The hardest thing to accept about my new reality has been: I have to be a little less critical of myself. I've always been my own worst critic, and I've had to learn to give myself a break.
16. Something I never thought I could do with my illness that I did was: Dance my socks off at the Symposium!
17. The commercials about my illness: Don't exist.
18. Something I really miss doing since I was diagnosed is: Dancing for hours with wild abandon. I had to reel in the abandon, and cut the hours. I do love to dance!
19. It was really hard to have to give up: Running. I know this surprises some of you, since I'm not a good runner. I ran my first and second 5K the summer before my diagnosis. It's not that I loved to run...it's just that I COULD run. I don't like being "unable" to do anything! I just can't run yet. Maybe someday, but not today.
20. A new hobby I have taken up since my diagnosis is: BLOGGING!!
21. If I could have one day of feeling normal again I would: just enjoy it. I do have days when I forget about my heart disease, or at least tolerate the little things I need to do to feel like a real live girl. I truly am blessed with lots of good days. Bad heart days are terrible. I wouldn't wish them on anyone.
22. My illness has taught me: to forgive and forget. Life is too short to stay mad. Some things can be left on the salon floor. I an learning to forgive my body for betraying me, but that's a work in progress. We're talking. We go to dinner sometimes. We're working on getting back together.
23. Want to know a secret? One thing people say that gets under my skin is: "I don't have heart disease, I just have..." then they list a myriad of cardiac problems a mile long that ARE heart disease! I used to do this too. DENIAL! "I don't have heart disease, I just have a rhythm problem." BUNK! Dude, I was dead on the floor without my own pulse! It's called HEART DISEASE! A Dis-Ease of the HEART! Now I say it. Now I own it.
24. But I love it when people: tell me they are glad I'm still here.
25. My favorite motto, scripture, quote that gets me through tough times is: "The light shone in the darkness and the darkness could not overcome it." Also, when I pray and ask God why, He always responds the same. "Because I love you!"
25. My favorite motto, scripture, quote that gets me through tough times is: "The light shone in the darkness and the darkness could not overcome it." Also, when I pray and ask God why, He always responds the same. "Because I love you!"
26. When someone is diagnosed I’d like to tell them: It won't always feel like this. Just hang in there. You are not alone, you've got lots of heart sisters!
27. Something that has surprised me about living with an illness is: how many others are walking around with similar issues that are living in fear and loneliness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Pray for me and with me.
29. I’m involved with Invisible Illness Week because: I thought you'd want to know what it's like to look healthy on the outside, but not so much on the inside.
30. The fact that you read this list makes me feel: Strong, loved, heard, blessed, and like maybe I'm taking one for the team!
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