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).

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!

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.

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.

Sunday, August 22, 2010

Birthday's

So much in such a short time. We were on vacation last week. No Internet. No TV. It was nice. Allan and I would joke that we had nothing to talk about.

A week ago on the 13th we observed what would have been Ava's first birthday. We decided to get yellow balloons in her honor. I think it will be a tradition. It was a really hard day. A little harder than I imagined it would have been. You cry, you move on. You cry again, you keep going.

On the 14th we left for vacation. The bugs wanted to see Ava and Eric's grave for their birthdays. We decided we would go when Daddy could come too. It's not something I wanted to do, but I told Emily that I would go if she needed to go and I understand that. I told her that Daddy and I practiced going to Eric's grave while the matching bugs were babies so that we would be ready for when they wanted to go. She hugged me.

So Saturday was the day. In the furry of packing and forgetting stuff we made our way to the cemetery. This was one visit I've been dreading since Ava was in the hospital. To see the marker for your child and then to have to imagine a second marker with a second child next to it haunted me. To have to see it tormented me. Of course we couldn't find it right away. Then when we did I was shocked to see that the markers were vertically aligned, not horizontally. For some dumb reason, that made me feel better. As it turned out it wasn't as horrific as I thought.

Monday the 16th would have been Eric's 7th Birthday. What is so special about him (there are many many things actually) is that he made my dreams come true. He made me a Mommy. I love that that distinction is his and his alone. For his Birthday I usually like to take the girls on a fun adventure nothing too fancy, just different. This year we were on vacation so we took advantage of the day and rode a Steam train to a Riverboat and back again. It was nice. I bought an ornament for the Christmas tree.

What I thought about a lot on vacation was that as a parent you love to talk about how your children came into your lives. The First birthday is huge for remembering and encoding that amazing moment in your life when you became a parent to your child. When your child is no longer with you for that birthday or any others you feel like you can't recognize the day. You can't talk about the birth story. You can't remember all the joy and expectations. It's hard for the family to do, but it just makes those who listen uncomfortable.

I have so many amazing memories associated with the births of all my babies. I only have three that I feel comfortable telling about. But there were two others who I will always know about and who changed my life, profoundly. I don't want their stories to be taboo.

It's so strange. We treasure the memories of those who die in the "right order". We get together after an internment to "remember". But when it's not in the "right order" and your child dies first. The topic becomes trepidatious and sometimes taboo. But we love our kids, living or not, and we want to remember too. I think that it's harder to hide behind what we perceive what society dictates as "acceptable". It just makes the bereaved feel more excluded. I hope that through Ava and Eric we will feel more comfortable with our selves and with our emotions following "premature" death. If we remove the "supposed to's" and the "shouldn't have beens" then we can see that death stinks, but it happens to us all.

Tuesday, August 10, 2010

Have Joy. Spread Hope.

It looks as if we have ourselves a Foundation!!!

The Eric and Ava Benton Joy-Hope Foundation will be holding it's kickoff event on Saturday October 23, 2010.

The Joy-Hope Foundation will provide families who are grieving the loss of their child to illness with a "New Memory Making Getaway" and support Mitochondrial Disease Research. After Ava's death friends joined together to raise funds to send our family to Disney. We found the "break" to be a huge blessing for our family and are honored to be able to offer that to others.

We will be hosting the Have Joy. Spread Hope. Inaugural 5K Run/Walk Kids Fun Run.

The race Starts and Finishes at Brandywine Valley Baptist Church located at 7 Mt Lebanon Rd, Wilmington, DE. Registration begins a 9am race starts at 10am. The race is EdJaH Chip timed, a division of races2run.

Entrance into the race is $18 if you register by Oct 21 and $22 the day of the race. A family of 4 can register for $60 and Kids under 18 can register for $15 by Oct 21 and $22 the day of the race. The Kids Fun Run is free, but the children are encouraged to obtain sponsorship. The child who raises the most money will receive a prize.

There will be t-shirts for all who are pre-registered and there will be merchandise awards for the Top Male and Female finisher, the top three in 10 year age categories and the top 3 walkers.

There will be post race refreshments provided for all as well!

Online Registration is available through http://www.races2run.com/
The direct link is:
http://www.races2run/2010/2010details/10-2010details.htm#102310-Joy

If you are not a racer or walker but would like to help you may send a donation to "The Joy-Hope Foundation" 220 Fieldstone Crossing Dr, Bear De 19701.

We will post when the Joy-Hope Foundation website is up and running! http://www.joyhopefoundation.com/ if you would like to peek at our logo.

We are a not for profit foundation, who is pending IRS approval. Donations are tax deductible to the extent which is allowable by law.