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."


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


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!

Friday, September 17, 2010


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.

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.

Wednesday, September 8, 2010

New Normals

For days now I've been sitting down to blog and nothing. Either I have to go do the next thing, I'm way too tired to think straight, or there are no words ready to come to the page.

Our days are very full and busy. SO much so I was informed that we are now out of coffee and are on our emergency reserves (you know the kind that you collect from various gifts and functions that would not serve well on a daily basis).

Today I sit to blog, drinking coffee for the pure necessity of the caffeine not the enjoyment and satisfaction of the cup.

Last week we started to Home school the bigger bugs and let the little one think she's being home schooled as well. It's an adjustment for all of us, but I am surprised to see that Elaina is having the biggest adjustment with it right now. I am not shocked, just surprised that it's her to the biggest extent.

I am pleasantly surprised. Like most things for our family right now Allan and I are on automatic pilot. We are exploring new ideas because we don't have the energy to argue with God as to why we can't do what He asks us to do. I've been interested to see how Homeschooling would play out not without some trepidation. To sit and see them learn. To see that clouded over face of confusion turn to a twinkle, squeal and a smile is very rewarding. I love that I get to be the one who has that front row seat.

One thing that I did not get a full handle on was that this time I have with my girls is found time. On Face Book I see that all these other Mom's are saying goodbye to their kids for the day with a healthy mixture of happiness and a twinge of sad. For some it's getting back into routine, others it's the beginning of a new normal. I realized that I am not ready to miss any more of my kids right now. I know with school you will get them back at the end of the day, but the empty house on Thursdays when they are at our Home school group all day, is a bit much for me. I had no idea.

I know this is a powerful feeling and I am keeping it in check. I am not Homeschooling because I do not want to let my children go. I f Homeschooling becomes out of that need, it will be time to enroll. This year is gonna be tough on the girls, they need to be able to learn all they can in an environment that is conducive to dealing with all that is on their plates. Plus, they really love it.

They also seem to have a busy schedule. They take a combined gymnastics and ballet class and in a couple weeks they start piano lessons. Thinking is changing, imaginations are booming and the friendship in their sisterhood is what I've always prayed that my children could have. These are times that I am finding that I do and will treasure.

We are also all a buzz trying to secure sponsorship for the Have Joy. Spread Hope. Inaugural 5K in Oct. We are all excited to see how this event comes together and debut our vision for all to see. Humbly, we can not wait to bless others the way the community blessed us. It is such an amazing honor.

I've been training to run this 5K. This is a big deal or me. I never thought I could do it, and now I am half way. However, while Apple picking the other day I pulled something in my knee. For now I'm on the DL. Not very patiently I might add. I began to train for my babies who couldn't even breath on their own. They didn't produce enough energy to sustain life. I want to train my body to run and use energy for them. Next thing you know, I think I like it. I look forward to getting out there and pushing myself in a productive way. I am praying that my knee will feel better so I can get back out there and I can run this 5K. Besides, I want to buy new workout clothes!

With the other short term commitments and the birthdays of Eric and Ava, my mind has been swirling. We've cleaned out our baby and little girl stuff. A difficult task in it's own right for any sentimental mom. Now there are Fall like smells and the memories flood back of their short little lives. The other day, for the first time in 5 years, I saw a baby that looked like Eric. It was totally unexpected. Then it felt good that I could cry about JUST him for a minute. I don't know if that makes any sense.

These last couple days I've been feeling unsettled in my soul. I'm not angry or dealing with that hormone surge like feeling. I usually know why. Right now I don't. So I steal a couple minutes and then off we go. Trying to balance living is tricky, but God is in control so I actually don't feel out of control. That is a nice feeling.