Saturday The Joy-Hope Foundation debuted with a 5k Run/Walk. We were so excited to have a great turnout. There were 275 registered racers and at least 300 turnout for the overall event. It was so amazing to see the whole vision I had come together. We were able to raise over $11,300 for our efforts as well!
There was no way that this event could have been pulled off if it weren't for the 30 volunteers that day and leading up to that day. That was one of my favorite parts. It really blew Allan and myself away. We could not believe that there were so many people willing to work their tails off for our foundation. So very cool indeed.
As we were cleaning up, the niece of one of the volunteers found a bright red ladybug on her leg. Perfect. I showed my bugs, they were delighted. That was so very special.
This race was held the weekend of the Anniversary of Ava's infant dedication. Not intentional, but that is when it was. As a fatter of fact it was the Anniversary of Eric's as well. This is when Allan and I promised to put God's Plan for our children ahead of our own. What ever it may be.
I remember how she was not having a great day that morning and I wondered if I was going to need to take her to the hospital instead of the church. I felt sick to my stomach. Then she perked up and did great. We came home and had a huge party. We were celebrating Emily and Alexa's 5Th birthday and Ava's dedication. Although the party was a few weeks before their Birthday, they insisted that they share their special day with Ava. They still talk about how important that is to them. Who knew that a short 12 days later she would go to the hospital?
For the all of our children's infant dedication's my Mom makes a cake. She usually picks the scripture for the cake. It represents each child's theme, so to speak. She's really good at that by the way, hitting the nail in the head each time. For Ava it was a team effort. We settled on Isaiah 40: 29-31: "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
I could write a whole paper on the power that these words have for me right now. In this moment. In light of Ava, the Joy-Hope Foundation, Eric, parenting, grieving, holding Ava's hand at her bedside and being amazed by her inner strength and tenacity, having a 5K and running one for the first time in my life.
Ava's name means bird. I remember wondering why God wanted me to name my baby bird. It's not so glamorous you know.
As you can well imagine, race day was very emotional for me. To hear my husband stand before all of those people, some who came for the sport and most who came to support the vision of the Joy-Hope Foundation, and tell who we are, why we are hear, and what we've lost was surreal. We had a germ of an idea 11 1/2 months ago. Here it is. Where do we go with it now?
My questions are numerous as to what the next steps are and the "how's" of those steps. My mind was full on the way home of those things. Plus we were flat out exhausted, physically, emotionally, mentally. As we drove down route one south, I saw a Bald Eagle soaring, effortlessly, majestically, right outside my car window.
The Ladybug was for my bugs, the Eagle was for us.
Tuesday, October 26, 2010
Wednesday, October 20, 2010
Endurance
Planning and Training to run the Have Joy. Spread Hope. 5K on Saturday is teaching me a lesson in endurance.
You have a deadline. You have tasks that must be completed before the date. There are your regular responsibilities and the pop up surprises along the way. There is always a snafu, you can count on that.
To finish you have to bear down, set your mind to it and pace yourself. If you go out too fast, you won't be able to sustain until the end.
I am finding that there are times I need to step back and take a break. I need to recharge and make my bugs the priority. Not the training schedule or the 5K. Not my job. My family.
In the middle of the chaos of life I am reminded not to loose sight of the 3 little goals who are usually right on top of me or under my feet.
You have a deadline. You have tasks that must be completed before the date. There are your regular responsibilities and the pop up surprises along the way. There is always a snafu, you can count on that.
To finish you have to bear down, set your mind to it and pace yourself. If you go out too fast, you won't be able to sustain until the end.
I am finding that there are times I need to step back and take a break. I need to recharge and make my bugs the priority. Not the training schedule or the 5K. Not my job. My family.
In the middle of the chaos of life I am reminded not to loose sight of the 3 little goals who are usually right on top of me or under my feet.
Tuesday, October 12, 2010
Strength and Energy
Ever have a day where you sit down to do something at the computer, get up and hour later and realize that you never accomplished your original intent? There you go. That is why the Blog has been silent.
I always knew I wasn't Super Woman. When I was 5 I knew I was Wonder Woman. I had the underoos to prove it too. Now 30+ years later, no super powers and sadly, no invisible jet.
There seems to be a new rhythm in the house these days. There is a lot of missing Ava and play about death. The heaviness of grief is not there. Last week I felt it creep in for me personally. I knew what it was and was so disappointed that it was coming back for a few days. I rather enjoy grieving with out that heavy laden feeling. Especially when there is so many tasks to accomplish in a day right now.
The bugs are all about making sense out of Ava being gone. They won't ever make sense out of it, but they try to wrap their little minds around it to the best of their abilities. After a week of Lain playing "I have to hold my baby because she is going to die soon", she told her daddy, "I'm tired of Ava dying and going to Heaven and I'm tired of Ava being sick."
Us too, Ladybug. Us too.
Layer these emotions and thoughts with daily living- laundry (always there, am I right ladies?), meals, groceries, cleaning, bills. Add bath time, snuggle time, play time, discipline time the mitigation of the emotions of 3 ladybugs (hmmm maybe Daddy is secretly happy about the mandatory OT). Add 16 hrs/week for work, homeschooling and the Joy-Hope Foundation. Sprinkled with a training program to run the Inaugural 5K which is in 11(GULP) days. The cherry on top? Things I like to call "mini commitments"- you know the ones that would usually consume you but since you are so busy they become items to check off the list. Season the schedule with post season baseball where the two house favorites are making a run the the ring. As it simmers the smells of fall and the annual events bring us right back to a time when Ava "was here". When she "came with us" to what ever event we are attending at the time.
Welcome to life at ours house. (OK, Lain doesn't say that anymore, but I love it so I pretend she still does).
I find myself in the middle of all of these things to do, that need to be done, and I want to get done. Oddly enough, they are being attended to. Some more than others, depending on the day. Some days we feel the emotions of our loss bubble to the surface so we stir and turn down the heat so it doesn't boil over and make a mess out of everything. Other times we let everything else go so they can boil over and see what mess there is to clean up.
As I was running the other morning I realized that there is no way that I can do all that is on my plate right now. Yet I have energy. I have drive. I have a team of people who God put in my path that I could not do this without. My ability is not my own.
He is orchestrating all that is happening in my life. I have energy and stamina because of Him. Wisdom? Him. Desire and Drive? Him. 3 living Ladybugs? Yup. Him. A wonderful teammate (except in baseball)? You got it. He did that too.
My life and my commitments are for Him and because of Him. The Joy-Hope Foundation is His. We are just simply obeying. It's not so simple when you are tired and out of juice. But then He propels us on to the next step. Then "Oh look here we are now".
It's quite a ride. I am happy to be on it. I will also be happy to have a bit a of a reprieve after the 5K. I can't wait to see how it will all turn out and how it will come together. This alone is amazing to watch unfold. It's such a neat way for me to see who really is in Charge and how we are all instruments for His plan.
Although I once REALLY REALLY believed I was Wonder Woman, and dabbled with the notion of being Superwoman I know that I am just a women standing is the arms of her Lord, putting one foot in front of the other, learning to use my energy for those who can't.
Check out the Joy-Hope Website! www.joyhopefoundation.com
I always knew I wasn't Super Woman. When I was 5 I knew I was Wonder Woman. I had the underoos to prove it too. Now 30+ years later, no super powers and sadly, no invisible jet.
There seems to be a new rhythm in the house these days. There is a lot of missing Ava and play about death. The heaviness of grief is not there. Last week I felt it creep in for me personally. I knew what it was and was so disappointed that it was coming back for a few days. I rather enjoy grieving with out that heavy laden feeling. Especially when there is so many tasks to accomplish in a day right now.
The bugs are all about making sense out of Ava being gone. They won't ever make sense out of it, but they try to wrap their little minds around it to the best of their abilities. After a week of Lain playing "I have to hold my baby because she is going to die soon", she told her daddy, "I'm tired of Ava dying and going to Heaven and I'm tired of Ava being sick."
Us too, Ladybug. Us too.
Layer these emotions and thoughts with daily living- laundry (always there, am I right ladies?), meals, groceries, cleaning, bills. Add bath time, snuggle time, play time, discipline time the mitigation of the emotions of 3 ladybugs (hmmm maybe Daddy is secretly happy about the mandatory OT). Add 16 hrs/week for work, homeschooling and the Joy-Hope Foundation. Sprinkled with a training program to run the Inaugural 5K which is in 11(GULP) days. The cherry on top? Things I like to call "mini commitments"- you know the ones that would usually consume you but since you are so busy they become items to check off the list. Season the schedule with post season baseball where the two house favorites are making a run the the ring. As it simmers the smells of fall and the annual events bring us right back to a time when Ava "was here". When she "came with us" to what ever event we are attending at the time.
Welcome to life at ours house. (OK, Lain doesn't say that anymore, but I love it so I pretend she still does).
I find myself in the middle of all of these things to do, that need to be done, and I want to get done. Oddly enough, they are being attended to. Some more than others, depending on the day. Some days we feel the emotions of our loss bubble to the surface so we stir and turn down the heat so it doesn't boil over and make a mess out of everything. Other times we let everything else go so they can boil over and see what mess there is to clean up.
As I was running the other morning I realized that there is no way that I can do all that is on my plate right now. Yet I have energy. I have drive. I have a team of people who God put in my path that I could not do this without. My ability is not my own.
He is orchestrating all that is happening in my life. I have energy and stamina because of Him. Wisdom? Him. Desire and Drive? Him. 3 living Ladybugs? Yup. Him. A wonderful teammate (except in baseball)? You got it. He did that too.
My life and my commitments are for Him and because of Him. The Joy-Hope Foundation is His. We are just simply obeying. It's not so simple when you are tired and out of juice. But then He propels us on to the next step. Then "Oh look here we are now".
It's quite a ride. I am happy to be on it. I will also be happy to have a bit a of a reprieve after the 5K. I can't wait to see how it will all turn out and how it will come together. This alone is amazing to watch unfold. It's such a neat way for me to see who really is in Charge and how we are all instruments for His plan.
Although I once REALLY REALLY believed I was Wonder Woman, and dabbled with the notion of being Superwoman I know that I am just a women standing is the arms of her Lord, putting one foot in front of the other, learning to use my energy for those who can't.
Check out the Joy-Hope Website! www.joyhopefoundation.com
Wednesday, September 29, 2010
Check ups
Emily and Alexa had their annual checkups today. Go figure they are the same size. (Had their feet measured for shoes today too. Same.)
Their exams were great, but Emmy didn't do so well on her hearing screen in her right ear. I felt like I was going to loose it, scream, throw up , cry all of the above. The nurse off the cuff mentioned that it was that way, but it could be wax. Like it's no issue. HELLLOOOOOO? What is the thing that I am most afraid of.
So I tried to be patient and wait for the exam. I tried to encourage the kids and be present for the questions. I'm thinking, "look in her ears, look in her ears already." No wax. I'm thinking, of course not. Why would there be?
I told the doctor that Emmy has a cold and that could be why. He did see that she was congested when he checked her nose. So they would do a repeat screen and a tympanogram neither of which I care to ever hear the words of again. The pediatrician did his best to give me the "don't worry until we know stuff shpeal". He leaves. We wait for the nurse.
My sweet baby girl looks at Alexa and says, "Alexa, I have to have another hearing test and you don't because the first time I couldn't hear since the thing kept falling out of my ear."
AAHHHHHHHHHHHHHHHHHHHHHHHHHH!
I asked Emmy why she didn't tell the nurse. "I didn't want to interrupt the test."
She takes a repeat, the ear piece is on tight. She passes the test and the tympanogram shows that there is some fluid behind her ear.
Oh how I prayed that one of those test would have those results for Eric or Ava. I didn't think I would get my wish this time either.
My emotions are all jumbled up right now. But I am so glad that my bug is OK. So is Alexa who was a mess while she waited for her sister).
Their exams were great, but Emmy didn't do so well on her hearing screen in her right ear. I felt like I was going to loose it, scream, throw up , cry all of the above. The nurse off the cuff mentioned that it was that way, but it could be wax. Like it's no issue. HELLLOOOOOO? What is the thing that I am most afraid of.
So I tried to be patient and wait for the exam. I tried to encourage the kids and be present for the questions. I'm thinking, "look in her ears, look in her ears already." No wax. I'm thinking, of course not. Why would there be?
I told the doctor that Emmy has a cold and that could be why. He did see that she was congested when he checked her nose. So they would do a repeat screen and a tympanogram neither of which I care to ever hear the words of again. The pediatrician did his best to give me the "don't worry until we know stuff shpeal". He leaves. We wait for the nurse.
My sweet baby girl looks at Alexa and says, "Alexa, I have to have another hearing test and you don't because the first time I couldn't hear since the thing kept falling out of my ear."
AAHHHHHHHHHHHHHHHHHHHHHHHHHH!
I asked Emmy why she didn't tell the nurse. "I didn't want to interrupt the test."
She takes a repeat, the ear piece is on tight. She passes the test and the tympanogram shows that there is some fluid behind her ear.
Oh how I prayed that one of those test would have those results for Eric or Ava. I didn't think I would get my wish this time either.
My emotions are all jumbled up right now. But I am so glad that my bug is OK. So is Alexa who was a mess while she waited for her sister).
Wednesday, September 22, 2010
Running
The Eric and Ava Benton Joy-Hope Foundation's 5K is 4 1/2 weeks away. It's all starting to come together, and we are all just so excited to debut our Foundation and raise lots of money to support those who grieve.
I started training for the run in August. I took 2 full weeks off - one because I forgot my sneakers while we were on vacation and 1 because I hurt my knee. So now I have three weeks of training left to see if I can make that distance.
Honestly, I have no idea if I can. I want to, so I suppose that is half the battle. Will the walkers pass me? Most likely. But this is not to win. It's for me. I never do things just for me, but I am and it feels good.
There are so many side benefits that I did not foresee occurring. I have better days, emotionally, when I run. It seems that the endorphins produced and the sweat poured out helps me to pound away at all the crappy life circumstances I've endured in the past 8 years.
I have more energy for our bugs. I like that. Especially since 2 bugs couldn't produce energy. I love that by pushing myself and expending mine, I have extra to share with those I love the most.
So far, I've lost about 12 pounds! I love this. I had 5 babies in just under 6 years, all by c/s. I looked it. When we go out I have 2 nearly 6 year olds and a 3 1/2 year old. I don't have the 7 year old and the 13 month old to show why I looked the way I did. This is a battle for me and always hurt my heart in a deep and strange way. To see that I am taking shape and look a lot less like "letting myself go" that burden I've been lugging around is starting to fall away.
Who knew that I would be so into this. I am and I love it.
Our 5K theme is "Use your Energy for those who can't". You know what, whether you are afflicted with mitochondrial disease or you are dealing with grief, you don't have energy. It is awesome to see that even though my children aren't with me on earth, I can still do this for them and me too!
I started training for the run in August. I took 2 full weeks off - one because I forgot my sneakers while we were on vacation and 1 because I hurt my knee. So now I have three weeks of training left to see if I can make that distance.
Honestly, I have no idea if I can. I want to, so I suppose that is half the battle. Will the walkers pass me? Most likely. But this is not to win. It's for me. I never do things just for me, but I am and it feels good.
There are so many side benefits that I did not foresee occurring. I have better days, emotionally, when I run. It seems that the endorphins produced and the sweat poured out helps me to pound away at all the crappy life circumstances I've endured in the past 8 years.
I have more energy for our bugs. I like that. Especially since 2 bugs couldn't produce energy. I love that by pushing myself and expending mine, I have extra to share with those I love the most.
So far, I've lost about 12 pounds! I love this. I had 5 babies in just under 6 years, all by c/s. I looked it. When we go out I have 2 nearly 6 year olds and a 3 1/2 year old. I don't have the 7 year old and the 13 month old to show why I looked the way I did. This is a battle for me and always hurt my heart in a deep and strange way. To see that I am taking shape and look a lot less like "letting myself go" that burden I've been lugging around is starting to fall away.
Who knew that I would be so into this. I am and I love it.
Our 5K theme is "Use your Energy for those who can't". You know what, whether you are afflicted with mitochondrial disease or you are dealing with grief, you don't have energy. It is awesome to see that even though my children aren't with me on earth, I can still do this for them and me too!
Friday, September 17, 2010
Illness
There's been some postings on FB about sick kids. It got me thinking. I am always on guard when the bugs get sick. My automatic reaction is to worry. Today I realized that it's not out of a typical "Mommy Worry", but it comes from Eric.
He got a cold in November of 2003. We gave him medicine prescribed by our doctor. A few says later our baby that was recently diagnosed with severe-profound hearing loss, lost skills and tone. Never did he loose any personality. That always sparkled through his wide blue eyes and pudgy little cheeks. No matter what was going on with him, there it was. If you were a blond nurse in the PICU, he would perk up.
Which was really funny. Our geneticist at the time, a man whom I completely respect and admire, came to visit Eric. He had since transferred the case to a Mito Geneticist who was not with the Hospital by the time Ava was born. He was visiting because he simply cared. He did a little assessment too. Eric couldn't have cared less. Then his nurse came in. He perked up, eyes twinkled and smiled. He tracked her too. The doctor said, "oh I see you don't care if it's an old guy like me." I guess you could say he was all boy.
Every time the bugs get sick, the deflate. Their personalities are muffled. I long for the time that they can shake it off and I get to see them again. It feels like forever and I am so not patient about waiting it out. (Why would I be, I'm not really that patient anyway. Ask Alla, I'm sure he'll tell you.)
Whenever they are on the mend, my stress level goes down and my heart cries out. I worry that the day before the illness struck will be the last time I saw them how they are. I know the older that they get the more relaxed about it I get. When the illness lasts longer than I think it should, I start to unravel.
I know that it's usually just a cold, ear infection, sinus infection or GI thing. But in those moments, I wonder if my bugs' metabolic process can recover from what ales them.
Ava got a slight cold in November too. When you have a "broken" metabolic system or a fragile one an illness can rock your world.
He got a cold in November of 2003. We gave him medicine prescribed by our doctor. A few says later our baby that was recently diagnosed with severe-profound hearing loss, lost skills and tone. Never did he loose any personality. That always sparkled through his wide blue eyes and pudgy little cheeks. No matter what was going on with him, there it was. If you were a blond nurse in the PICU, he would perk up.
Which was really funny. Our geneticist at the time, a man whom I completely respect and admire, came to visit Eric. He had since transferred the case to a Mito Geneticist who was not with the Hospital by the time Ava was born. He was visiting because he simply cared. He did a little assessment too. Eric couldn't have cared less. Then his nurse came in. He perked up, eyes twinkled and smiled. He tracked her too. The doctor said, "oh I see you don't care if it's an old guy like me." I guess you could say he was all boy.
Every time the bugs get sick, the deflate. Their personalities are muffled. I long for the time that they can shake it off and I get to see them again. It feels like forever and I am so not patient about waiting it out. (Why would I be, I'm not really that patient anyway. Ask Alla, I'm sure he'll tell you.)
Whenever they are on the mend, my stress level goes down and my heart cries out. I worry that the day before the illness struck will be the last time I saw them how they are. I know the older that they get the more relaxed about it I get. When the illness lasts longer than I think it should, I start to unravel.
I know that it's usually just a cold, ear infection, sinus infection or GI thing. But in those moments, I wonder if my bugs' metabolic process can recover from what ales them.
Ava got a slight cold in November too. When you have a "broken" metabolic system or a fragile one an illness can rock your world.
Sunday, September 12, 2010
A Heart for Giving
Every now and again your kids do something that amazes you more than you thought they could. This week, Emmy and Lexa each had a moment like that. It was simple and humble, but showed me their hearts.
We came home from church last Sunday to a lemonade stand in our neighborhood. In hoping to see what the hub-bub was about, I read the sign to the bugs. The stand was set up by the cousins of a baby we have been praying for and I had the honor to make bracelets for. Her name is Haydon. She has Spinal Muscular Atrophy. Her life and what she can do despite her limitations is a miracle. Alexa squealed and could hardly wait to get in the house and change into "play clothes". She kept saying how we had to hurry so we could help Haydon. She grabbed her wallet so she could buy her lemonade with her own money. "We have to help Haydon". She repeated in her 5 year old way.
Later in the week we were talking about how apples grow in school. We cut an apple open to see the star and the seeds. We talked about how we eat the fleshy part and the seeds can grow into apple trees. Emmy's eyes got wide and twinkled. In her unassuming Emmy way she said, "Mommy! I know maybe we can send a bunch of apples to Haiti. Then they will have food to eat and they can plant the seeds and grow trees! Then they will always have some food!"
For each bug I thought, "Wow, I get to be YOUR Mommy." There really can't be anything better than that.
It sucks that we had to loose Ava. If we never had her or if she didn't have mitochondrial disease our family would never have experienced the love and support we did. If that didn't happen, our bugs would never know, first hand, how important it is to help those in need, to show God's love through community, to want to support others and give.
There can always be beauty among those ashes.
We came home from church last Sunday to a lemonade stand in our neighborhood. In hoping to see what the hub-bub was about, I read the sign to the bugs. The stand was set up by the cousins of a baby we have been praying for and I had the honor to make bracelets for. Her name is Haydon. She has Spinal Muscular Atrophy. Her life and what she can do despite her limitations is a miracle. Alexa squealed and could hardly wait to get in the house and change into "play clothes". She kept saying how we had to hurry so we could help Haydon. She grabbed her wallet so she could buy her lemonade with her own money. "We have to help Haydon". She repeated in her 5 year old way.
Later in the week we were talking about how apples grow in school. We cut an apple open to see the star and the seeds. We talked about how we eat the fleshy part and the seeds can grow into apple trees. Emmy's eyes got wide and twinkled. In her unassuming Emmy way she said, "Mommy! I know maybe we can send a bunch of apples to Haiti. Then they will have food to eat and they can plant the seeds and grow trees! Then they will always have some food!"
For each bug I thought, "Wow, I get to be YOUR Mommy." There really can't be anything better than that.
It sucks that we had to loose Ava. If we never had her or if she didn't have mitochondrial disease our family would never have experienced the love and support we did. If that didn't happen, our bugs would never know, first hand, how important it is to help those in need, to show God's love through community, to want to support others and give.
There can always be beauty among those ashes.
Subscribe to:
Posts (Atom)
