Tuesday, December 21, 2010


Well folks, we made it. It's always such a relief to make it through the first year. I remember thinking while Ava was hospitalized, "I really just don't feel like 'doing this and feeling like that' again."

It sucks, but here we are One year and 3 days later. It's amazing to me how I felt like I could exhale after Eric's 1st anniversary. I feel the same after Ava's. It seems we all do.

So now we are in the home stretch for Christmas. Talk about gear switching. The big bugs were so motivated to have less school work this week they sped through their last 5 math lessons in their first work book. So now we do fun stuff for the week. I think we are all excited about it.

Today, while Emily was trying to finish her last lesson she was becoming fatigued. Suddenly there was no way she could possibly know what came after 37. I was trying to probe her memory, "thirty seven......" I led, hoping she'd get it. Suddenly I hear a little voice from one who is laying upside down in my lap "38". Em and I just looked at Lain, who continued to try and put her feet on my face. (Such a fun game, for me I tell you.)

Next, Emily can't be bothered to remember what comes after 44. So I said " forty-four...dead pan...forty.......????" Lain, still upside down, shoves 5 fingers in Emily's face. And suddenly she makes no sense pretending that she can't count to 3.

One of these days when that bug chooses to let us know all she's hiding, I think we will be amazed. Recently she decided to let us know that yes, she can write her name. (Of course we knew this because she was doing it even better than she is now in August). However since then she decided that she can't be bothered with it. This way she can get her sisters to wait on her. We are going to Dutch Wonderland over Christmas Break. We told Little Miss Bug that she couldn't go unless she could write her name. Oh look, there it was.

I get the "How do you move onto Christmas" after all we have just before it. My answer- see above, we focus on all we have, remember all we lost and rejoice in the grace God gives us to continue on, one day at a time.

Saturday, December 18, 2010

One Year Ago

In all honesty, remembering the anniversaries of the deaths of your two children separated by 2 days is way harder than I thought it would be.

It's been 7 years since Eric was with us and today, it is one year since we had our sweet little Ava.

Sometimes, just getting through it is all you need to do.

On a brighter note, the bugs are doing really well with Ava's anniversary. I think that the harder day for them will be on Em and Lex's birthday. That truly is when they lost their sister. They only got to see Ava but a few times while she was hospitalized. That was mostly due to the H1N1 scare and the fact that they spent most of the time that she was in the hospital sick themselves.

I can remember the drive home after Ava died. I remember telling the bugs that their sister went to Heaven. I remember a couple visitors and making a Gingerbread House that broke. I don't remember what happened between putting the girls to bed and when I woke up the next morning.

I have spotty memories of the immediate time after Eric died. One that burns in my brain is of disbelief, emptiness and feeling like a failure. (How could I have a child that died?) After Ava's death, Allan and I had three amazing and wonderful bugs to go home to and to care for. For all my grumbling, they are the ones that keep me going. For that reason, I did not feel lonely and a hallow empty feeling after Ava died. I, of course, have a hole in my heart that is bigger than I can write about. There are feelings of disbelief- but not surrounded in embarrassment. It's more of a "Really? REALLY? This is not what I thought growing up would be like. SERIOUSLY? God are you SERIOUS? You want us to do WHAT?"

So we are incredibly sad. Always will be, I suppose. But in a few (seemingly LONG) hours, this anniversary bonanza will be over. We will have completed another year without our Fuzzy Monkey and the first without our Tiny Bug. Honestly, I'm proud of us. This really sucks, but we are still holding hands and walking where He needs us to go. Through my tears and my broken oh so broken heart I am saying, "Go Us!"

Monday, December 13, 2010


This week we face two big anniversaries for our family. Wednesday the 16Th marks 7 years since Eric went to Heaven. Not as a tough pill to swallow as the time marches on. Always we will miss that sweet little guy and often wonder "what if" he we still had him with us. But as time progresses, so does our acceptance.

On Saturday December 18Th we will mark Ava's first anniversary in Heaven. This one is a little more poignant. The bugs all remember their sister and have to grieve this one too. I have to say though, I am looking forward to being able to exhale. Living through the first year of loss is just a big held breath. You don't know what grief lurks in the shadows. You sure don't know when the wind will be knocked out of your sails as you try to press through the storm.

Allan often says, and I agree with him, that their birthdays are a lot harder. Those dates would be significant if they were still living with us. The anniversaries of their deaths, would just be dates on the calendar. Days we would be pushing through so we could get to Christmas. Part of me, of course, would like to bury my head and skip the whole anniversary thing. But the other part knows that we have to face the reality of what happened on those days. So digging deep for strength, I find myself allowing myself to remember those final days. Why bury it? It is the story of our family. It is what happened. Gut wrenching and hard, but it is what it is.

What it is, has component of beauty and grace. These two dates mark the end of suffering and pain for my brave babes. They were ushered into the glory of the Lord and completely healed. I often here about how someone "lost the battle" with whatever disease plagues them. For those who love the Lord, it's not about loosing. It's about completing the journey. I don't see death as a punishment, but as the next step in God's plan for us. I am sure glad that I am able to think this way. Otherwise I'm pretty sure that my life would wholly be unbearable. As opposed to those days where I feel can't go on any more. When I feel closed off from society and God's embrace. Those days when you feel so different that know one can possibly understand you or where you come from. Those days where I have no energy to walk another step further.

During those times I just can't press on. So I crumble. I cry and I lash out. You know what happens next? A phone call. A letter. A Facebook message. A voice from God Himself or His voice through those who are feeling His tug. His nudge to pray and reach out. I am not alone, and I am not out of His embrace. I then can get up, and keep pressing forward in the knowledge that our family is on this path as a result of His Divine Plan. So we can have Joy. We can Have Hope. And we will breathe again.

To Honor Eric and Ava this week, the Joy-Hope Foundation is striving to raise $500 for each month that we were blessed to have them in our care. If you would like to contribute please check out our website www.joyhopefoundation.com to donate.

Monday, December 6, 2010


Last week we took another step in this blind walk we are taking. There is new, high powered genetic technology that can map out the entire human genome. There is a research project that can compare data extrapolated from the DNA tested. The intent? To decipher the data and point to a gene that is, as we say in our house, "broken". The goal: discover what happened to Eric and Ava. The result: the discovery of a new gene that effects and causes Mitochondrial disease.

To play we need DNA and lots of it. Eric's DNA and Ava's were extracted from their muscle samples. Allan and I needed to donate lots of blood to the cause. With our hearts in our throats, we agreed to the research project and scheduled a time to donate samples. We got a sitter and planned to trek our way to CHOP at an ungodly hour so Allan can get to work. We mentally prepared for the trek, remembering that the last time we did this our sweet baby bug was snuggled and bundled in the car seat behind us.

Then I got the email. They needed samples from at least one unaffected sibling as a control. Well we have 3 unaffected, as they say. Yet were are the ones who are still on earth, so technically aren't we the most affected?

We call a family meeting and explain what is going on to the best of our capabilities. We let them know that while we would never force anyone to donate blood, we have to have one bug willing to do so. We also offered up a sweet deal for those who participate ( a toy and a family trip to Pump It Up). Hey, we aren't above bribery if you are going to do something big.

We made certain that they understood that what we are doing is to help in the future. We also made sure they knew that it is voluntary. After an afternoon of talking about it, playing phlebotomy and asking questions, the bugs went to bed. The next morning, lots more questions and sister playtime. Next thing I know I have my three bugs in front of me. There was a sister meeting and a unanimous decision to "do the blood thing for Ava".

We were so proud that they even decided to come with us. Honestly, it made the whole experience tolerable. Instead of an childless van, last week Allan and I drove a van brimming with sleepy bugs to CHOP.

All in all we only had one bug complete the deal. But we had another come close and a third willing to try, but we ran out of time. We are so proud of them. Their willingness to help and the fact that we went all together means more to us than we could ever express.

No doubt about it, that was a psychologically tough day for all of us. I really felt as if I was walking down hallowed halls. There was the scale Ava was weighed on. I recalled the relief I felt when I thought she was gaining and then realized that it was how it was calibrated. There I sat in the chair Ava and I sat in to have her blood drawn. There was the memory of how hopeful we felt after Ava's initial appointment. We were told she definitely had hearing loss and that she was definitely appropriate for a child of her age and gestation. Oh the hope we felt. It carried us through all we had next to endure.

We left that day as we did the time before. Hopeful for answers and fearful of what they may be and the implications they may hold for our family, the medical field, and the reality of what happened to our sweet baby boy and precious baby girl.

Saturday, November 27, 2010


The bugs love their cousins! What a whirlwind 30 hours where they got to play with all of them. So while they played, Daddy went to work and I shopped with my Dad, My Sister and my Niece. My Dad and I shop every Black Friday together. Our tradition since the day Eric was hospitalized.

Our next tradition after the shopping, is to start decorating for Christmas. I love Christmas time. I love the way our house looks, I love the excitement and anticipation. I love the twinkle in the bugs eyes. I love how we whisper plans and dream about all our traditions. It's amazing to me how much of last year I don't remember. I tried to remember where we shopped last year. Blank. I tried to remember my birthday, Mother's Day, Father's Day, Allan's Birthday. Nothing. I know that if someone tells me, I'll remember it. On my own? Nothing. I was noticing this as we unpacked some decorations. I don't remember putting them out or puttting them away last year. I also don't really remember where some came from either.

This year, as with the Christmases directly following Eric's death, I am trying to get there. I want to feel that anticipation of the celebration of Christ's birth. My love language is totally in line with the holiday. I love to give gifts just as much as I love to receive them. (And I'll tell you, I L-O-V-E presents). I will get there, I can have Hope and Joy. I like to.

What I notice this year is that it is hard to find the "thing" to give as a gift. I feel a little like, "what does it matter, it's just stuff." That being said, I wouldn't feel like that if Allan came home with something in the diamond category or a ... Dyson, or some Wusthof knives.

The things of this world are not that important. Our relationships are. Times together and ever our very traditions. The things that seem to store the memories that are treasures, painful and poignant. The routines that touch our very souls and make us feel connected to the ones who have gone before and connect us to the ones who are within reach. This year the bigger bugs are remembering all the "things" we do at Christmas time. They are remembering the traditions we started and missed last year and are asking to reinstate them.

I love that they remember all these things. But I don't love that we didn't do them last year. I don't love that Elaina does not know how "we make pie" together and the Bigger Bugs don't know that I "know how to make bread" (..."But Mom, is THAT how Grandmas does it?"). So I think I need to do those things more with them. I need to dig deep, stop feeling sorry for myself and remind them that we do love to bake.

Tonight we decorated our Christmas tree. I cried, as I do every year. I miss my kids. I really do. My Bugs let me cry without getting upset about it. They told me that it was going to be ok. I got a back rub and Teddy came to give me a hug. (To think that last year when Santa visited Ava at the Hospital and dropped off that bear and I thought 'oh great now what am I going to do with another stuffed animal'.) I simply told my Bugs that I just cry, because I just miss those babies.

So there is another tradition. I don't think that it will end anytime soon. I'm not sure if I'm ready for it to. Neither Eric nor Ava made it to Christmas. But they do have their own ornaments. Our Christmas Tree is one of the few places that I get to have a representation that we are a family of 7, not 5. We all hang our own ornaments, and we all share the responsibility of hanging Eric and Ava's. We remember that if Christ was not born, we would not be reunited. That's a pretty good tradition too.

Wednesday, November 24, 2010

Holiday Prep

There is a lot of pressure during the Holiday season. There is pressure from the family to get together, there is pressure from the stores to spend our money there, there is a palpable external pressure to be Happy. Today is such and such Holiday. I MUST be happy.

I tend to be a happy person. Seriously though, why do I have to be happy the 4th Thursday in November and on the 25th of December. I am the same me I was on the 2nd Thurs in Nov and the same me will be around the 27th of December.

I decided that I can't try to make this holiday season the "best" for our bugs and for ourselves. I am going to let it just happen and unfold the way it must; with all it's glamour and ugliness, with the trappings of joy and sorrow we feel. I don't want to force our bugs into thinking they have to feel a way that they don't.

Sitting in a room with family highlights who is missing. Not being able to talk about it and keeping a stiff upper lip is isolating. Family pictures are not for us. I know we need to celebrate the family we are and the family we have. The snap of the shudder with us "all together" is a misnomer.

Don't get me wrong. We want to have fun. We don't want to mope. But we just may not be there on the prescribed day. My experience notes it's the exact opposite. If I HAVE to feel a certain way, the pressure becomes too much and the exterior crumbles.

We all have someone we miss at the holiday table. It's ok to miss them. It's ok to cry. It's ok to smile and have fun too. It's not ok to expect- to expect grief or joy. Those two emotions are intertwined.

We don't have to put on a air of grief so as not to dishonor those who've died. We don't have to put on an air of joy to make all around feel safe. We are who we are no matter what the calendar dictates.

After Eric died, I made it my mission that I would not let the timeliness of his hospitalization (the day after Thanksgiving, 7 years ago) and his death- Dec 16, 2003- affect my enjoyment of the holiday season. It was working.

I haven't had the time or energy to think that far ahead this year. But I do know that we celebrate these holidays for a reason. One that is much bigger than the deaths of my children. Thanksgiving is a way to remember the beginnings of this great country that allows me the freedoms I enjoy and take for granted. Freedom to worship my God and to live to Blog about it.

Christmas is at the right time for the Benton Family. What better way to remember why we have Joy and Hope? We celebrate the birth of the WHOLE reason that I can get out of bed in the morning and face the day. The WHOLE reason that I can deal with my pain and shoulder that of our bugs.

Last year we knew our sweet baby girl would die sooner than we wanted. We hoped that she could recover. We pressed on with our traditions and balanced time with our four little ladybugs. It should have been a bad Thanksgiving. But how could it have been? Got to kiss my 4 sweet baby girls. I got to hang out with the love of my life too. Sure it's a haze, but I do remember those things. I am so thankful for that.

7 years ago- we did not know how our lives were about to change. We were caught up in hosting Thanksgiving and brining a bird. I had a pair a big blue eyes look at me with adoration. I heard Eric's belly laugh for the first time Thanksgiving night. Good memories I think.

Someday we will be over involved with the Holiday hoopla and get all excited and bent out of shape about the dumb things that annoy us all. This year we will take a step back and just let it be and see what forms out of the shadows of our experiences, knowing full well God is walking us down that path and is casting the light so we can have a shadow.

Wednesday, November 17, 2010

Blooms and Bugs

The big bugs are 6. I can hardly believe where the time went. I look at how much they've changed and grown since the first time I saw them, 6 weeks before their due date and only 5 pounds 1 ounce and 4 pounds 9 ounces. I am in awe.

In all honesty, their birthday was bad. They were both so sad the whole day and the days leading up to it. Last year, Ava went to the hospital on their 5th birthday. On the Sunday before their birthday I talked with Allan about a new approach. When dealing with tough issues I am from the "let them approach it with you" school of thought. We were all going down hill fast. Then I realized, if Allan and I are feeling this way and are taken aback by the root of the emotion, how the heck would the buggie boos be able to identify what is happening in their little minds?

So we had a family meeting at lunch. We were talking about what traditions are in the days preceding, so we continued on the theme. We have bookmarks in our memory about what happened last year, we all do. Right now through the end of the year, all those bookmarks are in pages of not great images of Ava, us not being there for them, others caring for them, and for Allan and myself lots of negative flashbacks regarding her care by a few physicians. (We try to balance them out with the images of those who cared for her very well too, but the bad sometimes takes over). We talked about how hard this is for us as well as them. We talked about how OK it is to feel all the jumbled up things we are feeling inside. We remembered that even during the bad times of Ava in the hospital, we have some precious memories of her too.

Armed with that knowledge- we muddled through the first marker of what will most likely be a rocky time in the Benton house. We tried to have fun together. We went out to lunch and they got free dessert and a song. I just cried because I was not home last year to sing to them. I cried because they were so sad during the song. I cried because they were there, with me and they made it another year. I peered their image in the rear view mirror and saw the long faces. Alexa simply stated, "We're having a hard time, Mom." So we just made a 4 Benton pile on the couch and snuggled in front of the TV for an hour. Megan and Mrs. B coming over to give love and Daddy coming home early to go watch them in gymnastics class helped turn the day around.

After they went to bed, I hit one of the lowest lows I've had in quite a long time. I could not feel how awful I felt. I couldn't put words to it. I knew that there was no possible way I could make it through the end of the year. All forward just seemed black. I asked Allan what he does if and when he gets that way. He answered, "I think of all the good things". Honestly, I could not think of a good thing. All my good things were over shadowed by a black cloud of grief too.

I sometimes wonder how anyone can understand the horrific grief we feel. The 2 cards we get from the hospital offering condolences, and offers to light a candle. The two letters from the cemetery wanting to know if I want to put a wreath on the graves of my 2 babies I will never hold here again. The two letters from the funeral home wanting to know if I want to light a candle. I really don't want to do any of it EVER. I just want them. I just want a baby to hold and love. I want my bugs to not be so sad. And I really really wish that we weren't called to the Joy-Hope Foundation for I wish that there was not a need to help those who truly do understand.

My bugs are all dealing in their own way and somewhat the same as even Allan and me. They don't understand. They are hurt that "everyone else" gets to have a baby to love and we can't. We write letters to Ava, we write down anything we remember about her. We ask poignant questions. We snuggle. We pray.

I pulled myself up by me bootstraps and fed off of Allan's determination to let them have a good day at their party. We talked about the outside games and if they wanted it to be the same as last year. Emily told me that it would help her. They did have a really good time, tempered with a couple emotional outbursts and sad faces. Alexa's theme choice was interwoven with Ava which proved to be hard when Teddy's image had to be cut so we could serve the cake. The Happy Birthday song was sad, because last party, Ava was there to help "sing". Over all though they have happy memories.

The bugs and I talked that the happy memories will help next year. Yet it's OK if some hard stuff about Ava pops ups, even when they are 80. It's a big deal I tell them. They were afraid of turning 6 because they didn't want to get further away from Ava. We decided that she is always in our hearts.

We've had frost a few times. My former single stem yellow rose in the front now boasts new growth and 2 buds. At Emily and Alexa's party, we all found ladybugs on our legs, backs, necks. In the car yesterday they asked why there were so many ladybugs at the party and none now. "Because God loves you so much and knew you were having a hard time, He gave you ladybugs." Then we imagined all that happens in the world in a day. We are that important and that loved that He just gives us some bugs and blooms as a reminder of who is Sovereign. As a reminder of how we are not forgotten, nor are we a lone. He compels friends to tell us that we were prayed for because they felt compelled to, without the foreknowledge that we were a drowning bunch. He allows us to feel that blackness, so we can move to the light. Sometimes it's a slow process, but the process is the most important part of the route.

So we enter the 6th year, full of grief but in the process of healing. With a realization that we are on the horizon of big emotions of the everyday kid who isn't focusing on the death of a sibling. (You know- he called me "stupid and dude and batman in gym class). With Him, even if there are times that we don't think we can feel His presence, we pull it all together.

Wednesday, November 3, 2010

When Teddy Bears and Sea Horses Collide

I can't believe that my big bugs are going to be 6 next week. We are in the middle of planning their party. One that I hope will help fill their minds with positive memories in comparison to last years birthday. I know that I can't take the memory of their sister going to the hospital on their 5th birthday away from them. Yet I still want them to feel extra special.

I can't express how grateful I am to at least have them to hug and love on their birthday. Sometimes I can't believe that I get to keep them. Of course then there are THOSE days.... I struggle with how I waffle between feeling amazingly blessed by being able to earthly Mommy my three living bugs and how robbed and angry I feel that I have 2 not here. Then I get mad that others get to have "another" baby. Like I'm not good enough. Then I see my girls and feel guilty that I ever think that way.

I don't want them ever to not feel like they are enough. They are so wonderful and make our family what it is. I grapple with what I feel- my joy and love for them are separate from the loss and emptiness I feel without Eric and Ava. They know that it is what it is. I try not to put on them a need to fill any voids I have. I worry about that.

There are so many people that talk about wishing they were five when all they had to worry about was what to watch on TV and what to color. I would give anything for my five year olds, soon to be six, to have that be the awareness level in their lives. Heck , I wish it was my awareness level too.

So for their birthday (s) I go over the top with a party, probably gifts too. Maybe it's my way to celebrate what I have and who they are. I used to think that I wouldn't be the 'let's have a party every year' type Mom. Here we are, having one every year. The lives of my children are worth my celebration. We all survived this year. We have each other to hold on to. I think that calls for a party.

Of course, it's going to be an "Under the Sea/ Teddy Bear Picnic" party. Which leaves me to wonder how that will work. But that's OK. I'll probably figure it out the night before the party anyway.

For now I think of all they accomplished in the the last year. I can say that I am one proud and blessed Mommy.

Tuesday, November 2, 2010

Trick or Treat

For Halloween we had an Angel, a Kitty and a "Flamingo" Dancer. We were joined by Cleopatra, a Pilgrim and Hermonie. (Honestly I don't care about Harry Potter, so I don't know the name. What I do know is that you better not tell my niece that she was Harry Potter. She REALLY didn't appreciate it. Did you know Harry wore glasses? Her character does NOT.)

We had our ultra healthy Halloween dinner- baked potato soup and hot dogs. We went to every house that had a porch light on. We celebrated my sister in laws birthday with cake and presents. We gave everyone their 2 pieces of candy, shoved them off to bed, sorted the candy and had our 2 pieces as well.

The kids had a great time. I hope my sister in law had a good birthday. I know that my brother did not have a good time as he slept on the couch and tried not to infect all of us with his mysterious hot fever.

I can say that I did it. I find I retreat and become apathetic when I don't want to face something. Halloween, as it turns out to be, is one of the first "marks" in a string of crap that the sentence "last year" begins with. I am starting to notice that talk of birthdays, turkey and that guy in the red suit are becoming unavoidable.

My matching bugs will be 6 in a week. I have so many mixed emotions about that. I was realizing yesterday that at least I get to hug them on their birthday. I am thrilled about that. This birthday is highlighting how much I hate that I missed their birthday last year. They talk about their dinner and what they got. If I was around for some of it, it's all gone. That just makes me so mad. The reason I wasn't home makes me pretty mad too.

I struggle with how to embrace all the festivities on the horizon. How to make them fun and enjoyable for the bugs. How to make them feel special for us as a family. Instead I just remember all the horrible things my baby endured and the time we were trapped in the hospital with her. My mind is filled with how crappy the doctors were to her. And how I have trouble making them hear me about how you treat a patient. Seriously, I can get lost in that. It would only take 2 seconds for me to spiral down that emotionally difficult and dark path.

I think of my Angel, Kitty and "Flamingo" dancer and their smiles that brighten the night. I hold on a little tighter. While I may start to boil on the inside, the heat is turned down to a simmer. I put one foot in front of the other and my hot angry tears can give way to the warmth of love I feel for my bugs. It doesn't fix it, but it helps and sometimes just that is what we need.

Tuesday, October 26, 2010

Race Day

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.

Wednesday, October 20, 2010


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.

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

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.

Sunday, August 22, 2010


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:

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.

Monday, August 9, 2010


I started to train to run a 5K. The first 5k I will run will be for the Joy-Hope Foundation. It will be in October and once there is an online registration (by the end of the week) I will tell you all the details. For now I am lost in planning the event, getting the Foundation "live" so to speak and getting ready for our vacation in a few days.

So because I seem to have so much free time, what did I do today, while Lain and I are sick? Yup, we met my Mom and Dad and picked peaches. In 35 minutes the 6 of us picked 212 pounds of peaches. I think Lain was responsible for 50 all by herself. So now I get to peel and can peaches. Oh and I think I'm out of lids.

Crazy? Yes, but last year we did not get to pick peaches due to the arrival of little miss Ava. So I needed to do that this year. So we did. Now I won't sleep. Especially since I'm blogging.

Today I walked in after my run to find Allan trapped under drippy and smiley Elaina. It was 6:20am. There went my quite time. We drew pictures and cuddled. It was really nice. Lain drew a picture of 6 people- biggest to littlest- 5 holding hands with lines around the edges. She told me ," Mommy this is me, this is Emmy, this is Lexa, this is Eric, this is Ava and the biggest one is you. See we are all in a Stadium and all your children are holding hands with you."

Tonight was the first time in MONTHS that Lain asked me, "Mommy, why did Ava die and go to Heaven?"

Emily, on the other hand, is doing much much better. Thank you for all your prayers for her.

Lex is laying low right now, but she really was grieving the hardest early on.

Here's the thing. I don't think it's fair that I get to be PMS and have Ava's birthday on Friday. I think that is mean.

Tuesday, August 3, 2010

Questions and Answers

We are having a blast at Saddle Ridge Ranch I tell you. Although on the way home today Emily asked, "But why do they want us to get up sooo early?"

I had no answer.

I did have an answer for Alexa's two questions tonight. She cuddled right up to me and said, "Mommy, I hope that when I grow up I don't have babies that die. But if I do, will you pray for me?"

I scooped her up (which is getting hard to do with my leggy nearly 6 year old) and told her that I am already praying that that doesn't happen. I will pray for her and I will be right there to help her. I also told her that is why we are seeking testing so we can determine if the bugs need to worry about what Eric and Ava had.

Our devotion tonight was talking about how God created a bug to be a bug and you to be you. It was a nice reminder that He is in charge and Eric and Ava were created by Him and are not a broken mistake. Sometimes I need to remember that.

Alexa's other question was at story time- Bearstein Bears Go to School. They walk to school on the last page. But they take the bus earlier in the book. She wanted to know why they were walking to school. In a moment of what I can only consider as Mommy Brilliance I said, "To reduce their carbon footprint. Now get in bed so I can tuck you in."

So we are plugging on. They are learning to be H-A-P-P-Y because God loves them. I am trying to keep up with the pace of a busy snack kitchen. I guess I should take a moment and know that I can be H-A-P-P-Y because God loves me too.

Monday, August 2, 2010


I was looking at some pictures of Ava right after she was born. I couldn't help but think about how perfect she was and yet so horribly broken. Although we thought she was funny looking after birth, she didn't look terminal.

This week the bugs flit off to Vacation Bible School. This is Lain's first year of being able to go. She is beside herself. I was listing all the things she will do, but I started by saying, "Are you going to...." She looked at me and said, "I don't know, am I?" I told her yes they do do all those things at VBS. Her eyes sparkled. Then Emmy told her that snack is "not just, like goldfish...but it is really cool." I told her that she is going to be able to sing with her class for the Mommy's and Daddy's on Thursday night. She could hardly contain herself.

Last year for VBS I kept thinking that if I made it through that week I would be home free. All of our babies were early and I was getting close to the danger zone. But I wanted the bugs to go, so I kept thinking that once we cleared the week, we would be ready. We made it through the week last year and Ava came the next Thursday. It was my last year for just Mommy and Laina time. I was bummed about that, but comforted by the fact that I'd have an opportunity to have alone time with Ava. Something I knew would be next to impossible to come by.

So here we are a year later. In all honesty I was kind of hoping Lain wouldn't potty train until after VBS so I wouldn't have to let her go. I remember sending Emmy and Lexa when they were three and seeing how big they got that week. So this year, I'm gonna have a different week than I thought I would last year. I have to be ready for Lain to grow more and expand her horizons. I have to be ready for not having alone time with Ava.

I'm not ready for either really. This week marks the beginning of what will be a tough time for us. It's when the memories of when Ava and Eric were with us are the most vivid. Being in that time of year really does a lot to jar the memory. This is honestly what I've been dreading and here it is and I can't stop it.

Today in church I was thinking that I should try and turn this into a blessing that I can have all these memories flood back. I know that it is that way about Eric now. Like a breath of fresh air when I remember something I've either forgotten about or forgotten that I remembered. But in a 4 month life span those are few and far between.

The switch will flip, and the memories of Ava, while always cherished, are not going to come without a price. Sometimes I think I forget that she was real. I get so wound up in hearing her name and thinking about her at an arms length I forget HER. Then something jars my hardened mind. And bam there she is in it and she was real. I wonder if it's like that for the bugs too. I guess it's a way for us to keep moving on.

Ava's birthday is next week, Eric's three days later. I wonder how much I should bring that to mind for the bugs or if we should see where they take us.

Monday, July 26, 2010

Try it and See

This weekend I got to sing on worship team for the first time since I was pregnant with Ava. I was so excited to go to rehearsal ( my favorite part). I feel like I can really open up and connect with God and the music. As we got into it I realized that that was not how this rehearsal was going to go. My mind became flooded with all that I've forgotten how to do. Simple things like repeats, codas and such. It was a reminder that there is a vast divide between before Ava and after. The brainpower that it takes to focus on a task like that felt daunting.

Then there were the lyrics. We were singing in one song about letting the blind see and the deaf hear. There are so many verses in the Bible about those things. That is what I prayed for for Ava. That she could hear.

So then in order to make it through I thought about the lyrics in the context of the song. We were singing about the blind seeing and deaf hearing not literally. It was about opening up the hearts, eyes and ears of those who do not know God or don't want to know Him. I thought, OK, so I can do this. Whew. Who knew that even singing the word "deaf" would be so hard.

Another song on the We sing that "death won't hurt me now" and "death where it thy sting?". I tried to think about it in the context of the song. Of course what it means is that we are Alive forever, through Christ and His Resurrection. There is no sting in death and it can't hurt us, because it is not the end. It's the beginning. While that brings comfort to know that MY death can't hurt me or sting me as I will be in Heaven. I realized that death for those who are still living has quite a sting. Anyone who has experienced loss knows that.

So, on the way home I decided that I wasn't ready to do this. How could I get up and sing those lyrics? How could I make it though? I was ready to run, hide and never come out. I know that "God is Good" but how can I sing that when I have a wall up for actually worshipping? I get to some level, but to cross that threshold and let the Spirit flow through me is too painful. Too poignant. I don't want to crumble while there are witnesses, of course.

Or is that the reason? I truly believe in the Goodness of God and His Divine plan. I know that what is happening in our family is for His purpose and to bring Glory to Him. I am a willing participate, really. His love for us is what is keeping us together. I get that. But to go to that place right now where the music can flow freely and to be caught up in that type of worship? Really? How do I let go? Letting go leads to uncertainty of my response, while knowing that for certain I will find more ugliness I have to deal with, uncover and grieve.

It takes strength, desire and a willingness to try. It also takes a kick in the pants. U2's "Where the Streets have no Name" becomes my mantra. I want to run, hide, tear down some walls. I want to be with God, but I want to hide behind my walls. If I didn't try. If I called and told the director that I couldn't do it, I would still be stuck behind my walls. Thrashing and trapped.

Freedom comes from letting go and allowing God to move.

I knew if i didn't try it and see, I would be disappointed with myself. So that's what I did. I got up and left the house Sunday morning at 7:15 to make the half hour drive to church. I had no coffee (Allan forgot to turn the pot on and I didn't have time to brew it. I thought about filing for divorce, but I guess we have to exercise forgiveness on a daily basis), and no speaking voice thanks to my germ mongering bugs. Armed with a bottle of water, a sleepy mind and body I was off, mostly comatose.

I practiced. I envisioned a coughing fit so I could skip singing during the two services. I had very low expectations. I met my goal, I stood up there and I sang. All I wanted was to get through it. And I did.

Something transformed in the second service. My walls were crumbling and my guard was down. I was able to worship, not just sing. I got choked up, because the deaths of my children stings and hurts me and it's indescribable. On the flip side my mortality is not painful. It's welcome. God's love for me and you is indescribable and uncontainable too. That's worth the risk to try it and see.

Friday, July 23, 2010


If you would pray for Emily that would be great. She is super sad right now. It breaks our hearts to watch this. When Alexa and Elaina were going through their intense grieving phase were more numb than we are now. As hard as that was to witness and deal with, at least we were "padded". Now that we are able to think a bit past tomorrow, it makes it all the more poignant to watch her go through her steps.

The other thing is that I have to fight with my need to not want to watch it. This is Emily's storm and we have to ride it out with her while God navigates her ship.

She is so deep and compassionate. That is awesome, but on the flip side she feels things deeply and they tend to be a little locked tight. She is happy go lucky by nature and wants to see the good in her world. This is hard for her. To be so disappointed. She is recalling big events and has big questions. Some of which make me sad to hear since what we thought was a good decision, is hard for her today.

At the same time I think that there may be a certain level of "milking" it. I need wisdom to discern which is which so we can act accordingly. It's a fine fine line. One that we are walking as well when we are low on the patience and tolerance.

Sunday, July 18, 2010

Cleanliness May Actually be Next to Godliness

I knew it has been a long time since I posted, but had no idea how long it actually has been. Part of the reason for my silence is because we suddenly got busy in a good way. In the recent weeks I feel a bit of a reprieve from the looming cloud of grief. I see that the bugs are feeling that as well. We are transitioning, and that is a good thing.

Since my last post I have a couple bugs that are jumping into, head bobbing and taking some strokes in the pool without a life vest. I have a still very excited bug about being oh-fishally- big. I have a bug that can put ponytails in her dolls hair. I have a bug that learned to use the toaster. I have a bug that loves to get dressed by herself and a Mommy who lets her be ,mismatched and backwards as long as we aren't going out in public.

We've picked blueberries and strawberries, we are on a second planting of beans. We color and paint. We have a new front door and storm door. We bounced and slide at Pump it Up. We toured Herr's Chip Factory. We've celebrated the birth of our country. We ride bikes, splash in puddles. We got caught in a downpour.

I am now beginning to plan ahead, and it's not too overwhelming for me. The past is still muddy and long. My concept of time is still off, but I can see past the next minute.

The Joy-Hope Foundation is becoming more defined and solidified. We had a great time hosting Mom's Marketplace. Allan and I have been working a lot lately. We've gone out on a date and even watched a movie one night. I baked cookies, and made play dough.

Along with this the house is getting more organized, the bugs are becoming more polite and helpful. We are working on correcting bad habits that formed as a result of Mommy and Daddy having a lack of energy to follow through. We are talking more, cuddling more and trying to listen to the bugs' needs. You know we are becoming more "checked in" parents instead of "checked out".

I organized my pantry. It took a long time. I had to purge a lot of things in it. Staples I stocked up on at a good price so I could be creative with my Christmas baking, meals for the winter. A simple task became a project of purging. I slowly go through Ava's things, and have to step back. It's too overwhelming sometimes. When I enter that room, I know that there will be pain in purging. When you go to clean out your pantry, you aren't really expecting pain in purging. Really I love to throw things out and sort them. This time, I was faced with another reminder that our life stopped for a year. Crackers that were stale, chips that were old. Into the trash.

The thing is is that after the purging of the bad stuff comes the reorganized, restocked and fresh pantry. A pantry that is ready to accept a new challenge and not get bogged down by the build up. I look in it and see it as a metaphor for where I am right now. That is why I do all that we have been doing these last few weeks.

It's amazing to me. We were getting ready to spend the day at the beach on Thurs. I was remembering the sense of urgency I felt when we went down last year. I was in my third trimester with Ava. I felt like 'I'm not going to let this baby hold me back. I can do what I want because I, of course, am super mom!' I felt a sense of urgency to capture fun moment with the bugs before the baby was born and we were on hold for awhile. We thought about what it would be like the next summer with 4 kiddos on the beach. I was bound and determined that I would manage it and we would have fun.

Well, I did manage. We did have fun, but I didn't feel the sense of urgency to have a great time before my life was turned upside down. Instead I watched my bugs play on the beach and experience the world God created. I soaked up the beauty of the day. Then we came home and I opened up my pantry. I realized that we just need to be ready to accept what comes next and not be overwhelmed by the waves, in the ocean or of surplus expired crackers or from whatever shall come next.

Friday, July 2, 2010

On the Horizon

What is that feeling? It's faint yet familiar. I remember it, like an old friend you reconnect with on Facebook after 20 years. Hazy memory, then memories flood back and the synapses firing on all cylinders.

Ahh, yes. It's EXCITEMENT. And it feels good. I hope it stays for awhile.

The Joy-Hope Foundation is well on it's way to going "live".

We are having a Christmas in July Mom's Marketplace on 7/10/10 from 9:30-12:30. Can't wait to highlight handcrafted items made by my friends, my family and myself. There will be Tupperware too! (If you want details, email me or check facebook).

Elaina is potty trained and not looking back.

Emily and Alexa are over their tummy bug and are helping out around the house. They constantly amaze me with their huge imaginations and compassionate hearts.

I think I'll ride this wave while I can.

Tuesday, June 29, 2010

Bedtime Bible Story

Saturday night I was home alone with the bugs as Allan was out all day with friends. Even though Elaina was overtired and Emily was getting sick, we had a sweet Bible and Devotional time before bed.

The story was about Job. I've heard it a million times. I've read it all the way through a few. I've even read a personal account about a women who lost a child to Mitochondrial Disease (Holding On To Hope) and how Job relates to her life and understanding of God.

There we were all snuggled together and reading about Job in one of our Children's Bibles. (My First Study Bible- Tommy Nelson Books)

" Why Good People Suffer. I am Job. I loved God very much and always tried to please Him. God was good to me. He gave me a large family, a beautiful home, and many nice things. Then my problems began. I lost everything I had, even my family. My friends told me that God was punishing me. But I knew better. When you have trouble remember my story...and trust the Lord."

The title was "I'm Glad I didn't give up on God." In simple terms so kids can get it, and grown ups to, it went on to tell the story. One after another a messenger came to tell Job about overwhelming loss. Catastrophic, actually. His wife wanted Job to curse God and die. Job refused. He was tested by God. He remained faithful and persevered. He was Blessed over and over.

When we walk with God, life will never be peaches and cream and happy all the time. Living is hard. Earth is tough. There is joy to be found and happiness to be had. When God gives us Good we are so ready to praise His name. When the going gets tough, we've decided that He has turned His back on us. That He's Forsaken us. Yet the Bible says, " I will never leave you or forsake you."

When we walk through the fire, we are molded and changed. It takes heat to melt the hardness of our hearts. The ugliness of our souls. When we cool, we can have a beautiful luster, if we allow Him to work within us.

The "Think about This" section at the end read: "When good things happen to you, do you thank God? When bad things happen to you do you blame God? Job could have blamed God for all the bad things that happened to him. But he didn't. He loved God and Knew that God loved him, too. We should thank God for everything we have."

After Eric died, I became pregnant with twins. For a long time I thought it was because God was showing off to the medical world by saying, "Look, you think you know everything with all your research and knowledge, but here's some twins. I can do anything." Years later my Mom told me that God gave me twins because He loved me. Still brings me to tears when I think about it. I remember that He told me that someone else was supposed to join our family. Along came Elaina.

Eric and Ava were an expression of His love too. Through them I think I learned just how much a mother can love her children. And how free I am to love the bugs on earth.

Somehow we feel like we are entitled to happiness and an easy life. We aren't. Somehow we think that when God is in control of our lives the struggles are absolved. Not so.

I scares me to think about all we have left to loose on this earth. All the trouble that can come. Then I look and see all He's done for us even in the darkest times. Clearly I am not thrilled with the path He has lead us down. The thing is that He is leading and whether or not I am thrilled, angry, happy, or sad, He is in charge of it so I can deal with it. Sometimes it doesn't seem like it, but I know God has our best interests in mind. So I hang on to that as I watch my bugs stretch and change. I hang on to that as Allan and I do too.

Wednesday, June 23, 2010

It's Oh-Fish-al

Well, I am here to tell you that the prayers are working. We are all a little more settled. Which is amazing since we've been really really hot this week. For the 3rd time in 6 weeks our A/C broke. It is now temporarily fixed. Unfortunately we need a new one. There is a laundry list of things we need to replace in this house. The problem is that we can't get to them b/c of the things that need help that we weren't expecting. I am trying not to let it set me off too much. Sometimes I am successful in that, sometimes not really. At least I'm trying.

Our big news is that little Miss Elaina Bug is OH-Fish-ally BIG! As Allan said she somehow decided that it was her idea and that was that. We are Oh-Fish-ally proud of her. She decided that now that she is big she can go to Emily and Alexa's Sunday school class and sit in the third row in the mini van with them. So cute. I won't lie and say that there isn't a little twinge when I think that I don't need to buy diapers, wipes and all that paraphernalia anymore. What Mommy doesn't look forward to that day, but feels sad that the baby is growing up? This is just one of those things where if it were 2008 I would be looking gleefully ahead to this step. In 2009 I would have been counting down to how many more kids I have left to train. In 2010 I am glad to be done and wish I still had more to go (well, sort of I really do think potty training is of Satan.)

Tomorrow we are having our first official Board meeting of the Eric and Ava Benton Joy-Hope Foundation. Not sure what emotion to assign to that (excited, nervous, bittersweet?).

I think now I am looking forward to stringing together a couple of less complicated days. That sounds good to me.

Monday, June 21, 2010

Free Fallin'?

What a whirlwind week. There were so many good things wrapped inside it. A week ago we celebrated my birthday, then on Wed. Allan and I celebrated our 9th anniversary and of course Sunday was Father's Day. Friday marked 6 months since Ava died.

I have to tell you it's been really really really hard for me lately. I am hoping all the events of last week are the reason for the set backs. When you are sad and you have to face a day where you are expected to be happy the opposite happens. The fact that you are not in face happy is highlighted and in bold. But you have to try, you have kids. So you press on through the day, for them and hopefully for you too.

All that emotion has to go somewhere. It has to get out. So you crash. As you crash you think, OK maybe this will help so I can get out of the funk. Nope. Still need to crash. When you are at the end of your rope you wonder if everyone stopped praying for you. Where did all that lovely support and help go? You feel abandoned.

You get a text. You go shopping with some friends after the kids are in bed. You are no longer in free fall.

You see people at work. You check facebook. You hear that there are people out there praying and you have been relentlessly on their minds lately. You needed that.

Some days, weeks you need to crash. You NEED to fall apart. It's how you get rid of the cobwebs and keep going. Even when I wonder where everyone went. Where God went. I know that I need to feel what I'm feeling. It just hurts to do it. It aches so much. But I am not doing it alone. I know that God will never abandon me, no matter how mad or sad I get. He's right there. Allowing me to feel so that I can live and feel as the clouds dissipate.

I'm watching these same things happen with the bugs and Allan too. All 5 of us have hit a rough patch. We miss Ava. I am starting to realize that I miss 2 kids. Sometimes it's too much for me to handle and take. It's coming in dribs and drabs. As much as I can handle.

So if you wouldn't mind. We have much happening around here and we are needing a little extra prayer to stay strong and convicted in what God wants us to do. I am currently wanting to run, hide and play ostrich. I want it all to go away. I know that's not what we are called to do. But I am tired (exhausted actually) and frustrated with myself and my ability to Mommy and Wife and Amy. Truth? I am mad that I am in this situation and not patient with the process.

More later. I think I will go to bed at a reasonable hour tonight.

Friday, June 11, 2010

The intellectual side of me knows that when kids start to misbehave then it's usually a symptom of something else going on. Either they don't feel well, or something is array in their minds/bodies. Or it's because they are not getting their needs met by their parents.

The problem is that once the cycle starts we start putting out fires and get sucked into reactive parenting, not proactive parenting. Guess where we wind up most of the time?

The other day I dropped what I was doing and decided to play with them. Then I had to extricate myself and make dinner for our sitter to put in the oven while I was at work. The bugs asked if I could come back an play. I told them that I'd love to, but I needed to get dinner made and ready for work. There may not be enough time.

As I was scurrying around the kitchen I overheard the bus saying, "Mommy hasn't played like that with us for long." Alexa then said, " That's because of Ava." They weren't manipulative or angry. Just talking.

I won't lie. It pierced me. I know it has not yet been 6 months since Ava died. But they don't understand why their Mommy is emotionally unavailable sometimes.

Here is the cycle: I have a good day. I need to get things around the house done. I get tired and the good day is gone. I hit a bad couple days and I walk around in circles overwhelmed by what needs to be done around the house or any progress I made is undone. I hit a good day.....

What I need to do is make sure that when I hit a good day, I play with the bugs. I enjoy them. I make them realize that no matter how much it stinks that their brother and sister are not with us we are here and we are important. I need to make them feel special. I love to feel special. They do too.

So I am trying to break the reactive parenting cycle that is so easy to fall in to, even when life is hunky dory. My bugs have always done better when I am on top of it. With God's grace I will be able to have moments, days and eventually be able to sustain being on "top of it".

Wednesday, June 9, 2010

Traffic Jam

I can't believe how debilitating thoughts can be. My mind has been so consumed lately I feel like I am spinning my wheels. I have ideas about the Foundation, as well as a hefty to do list. There are book ideas and bracelets (which now include rings and necklaces). There are ideas about advocacy and support.

These all seem compartmentalized, but they really seem like they will link together under one umbrella The Joy-Hope Foundation. I really don't know the how's but I feel it. I go but gut a lot so I'm gonna keep on with this one.

Of course there are the basics of daily life- three little ones who seem to think that if I am sitting, they need to be on top of me and jockey for position. Laundry, food, housing projects, bills, yard work, shopping and little tiny pieces of EVERYTHING all over the house. Then there is the fun of summer to go out and snatch.

Each thing is all normal things of life. We paint pictures and objects. But when we do it I ask a question like,"how many kids do I have?" as I try to get the right number of plates for palette making. Three little ones shout, "THREE!" One little bug says, "Mommy, but you used to have 5." I say, "But it's OK to have 3 right now." And a painting we will go.

When my mind is so crammed, I find that I literally walk in circles. Stop halfway through something and take a break. Then I get annoyed with myself and my abilities to complete anything. I take a step back. I pray. I ash God for His timing and patience while I wait.

I then find that I have to keep it moving. Something happens and a string of half thoughts/ideas gets pulled together and we are off and running with all lanes open. Sometimes the speed limit is slower than others. Sometimes I wish the posted limit would be slower. What we are setting out to do is big. It's hard not to see how it's going to form, knowing that it is.

All of it is in God's timing. If I know anything my timing is not remotely correct and His is perfect.

Monday, June 7, 2010

Deleting Cookies

My mind has been so consumed lately I have no clarity. I'm not sure what is going on. But I find that I am simply spinning my wheels. I am in a period when I feel like I am seeing through the mundane and frivolous and am focused on God, His nature and how limited we as people are.

I see that all of our bodies are broken and are breaking. I see that we all have chains that bind us and hold us back from truly feeling free and experiencing what this life has to offer. It's those little things someone said to us when we were little that resonate. It's the tone that a positive thing was said but became misconstrued. These barriers keep us from living out loud. Living a genuine life.

Why do we feel the need to keep up pretenses? Follow in cookie cutter decorum? What is holding us back from breaking that mold and radiating the potential that God has for each of us?

The things in my mind that are holding me back are bubbling to the surface and being revealed to me. Each one I recognize and feel really stupid when I see how unfounded or misinterpreted it truly is. If you want to accomplish goals, you can not set yourself up to fail. I am trying to dust off my cobwebs and face that which holds me back.

By holding on to those things which bind you, life is crimped, tunnel visioned. We need to look beyond the skeletons and see that we can "Soar on the wings of Eagles" if we allow God to clean out the cookies in our minds. You know all those things that clog up our minds and slow our functioning.

Oh wouldn't my psych professors be so proud of me as I describe self-actualization!

My cookies? Thinking I can't do something because it's hard. Thinking that it's not worth it. So why try.

There are so many reasons to not try. So many things that can go wrong if we put ourselves out there and try something new. Ohhh we may even be rejected. Here's the deal. If we don't put ourselves out there, we'll never know. If we don't follow the path God has for us we will never be free.

I am not saying that the road is easy. Most often it's not. But I long to break free from my cookies and soar with God. I try, I succeed. I try, I fail. I feel discouraged, I keep pressing on. (OK so "Tubthumping" by Chumbawamba just popped in my head "I get knocked down, but i get up again...." Great now I'm going to sing that for the remainder of the day.)

Tuesday, June 1, 2010

Water Tables, Slip-N-Slides and Kayacks

I hate to mention the word......quiet......the bugs are still sleeping. They are in the basement in a double bed. Our A/C broke yesterday so they get a change of pace. You would think they were moving down there for a couple weeks! They got their jammies and their clothes for today and packed them in their play freezer that is now doubling as a dresser. At least their clothes will be cool when they get dressed. It is HOT in this house.

This weekend proved to be a mixed bag for us. We really had some wonderful family time and got a couple things that needed to be done checked off the list.

We explaining Memorial Day to the bigger bugs while Lain was bouncing around nearby. You should have seen their faces to realize that people fight for our freedom (what's freedom Mommy?) and die so we can have it. There was some awe, humility, and sadness mixed in. I can't blame them. I am so very honored to live in a country where some are called to fight for us and lay down their lives for the things we enjoy.

The bugs and I hit the road to go pick up dinner on Sat. night. (We were going to debut the new grill as ours rusted over the winter, but Daddy didn't get it together until after dinner time. You know they tell you one hour assembly and it turns in to 5???) Elaina was telling me that she drew Ava and she is so cute. I told her she was so cute. Then she turned to Alexa and said, " I just wish Ava could come back to us." Alexa chimed in, "I do too." Emmy then said, "I wish she could too." I certainly agreed. It's moments like those that I find touching. Unifying.

We took the Bugs kayaking for the first time this weekend. Now they are hooked. There is something so peaceful about being out on the water and looking around at what God created. There is something very adorable about my little ones in life jackets and wind in their faces.

At home we played with our water table, slip-n-slide knock off for $6.99 (gotta love a sale and a gift card!). We found ant hills, baby bunnies and discovered that the bluebirds have babies in their nest! Our beans, zucchini, cucumbers, peas, lettuce, potatoes, onions, cantaloupe, watermelon are up in the garden. One of our tomato plants has a tiny tomato. (Elaina what color tomatoes do we ONLY pick? "RED!!!!!!!!!!!" ") The bugs smell like sunscreen.

We had a cook out with my parents and brother that ended with a fire pit fire, marshmallows and Grandma's Peach Pie. As we were saying goodbye to everyone, I realized that I was happy. I had a good day, all day. I felt free of the ever-present grief. It was so so nice.

Yesterday we flew the flag, proudly. We picked up the toy room in the basement, at the instruction of my brother in law, I tired to assess the A/C/Furnace. Did laundry, made bracelets and rings and was surly. The bugs and Allan spent most of the day outside. I hid.

We finally got around to taking the crib down, while the bugs were chillin' in the cool basement. Before we brought it down to store, we joined them and told them what we did. Alexa (who was standing on the toy bench in a hat, sunglasses, a dress and a feather boa-she was a rock star of course-was holding court to the more tamely dressed, pretty princesses) stopped and got sad. Emmy stopped and got sad. Then they each said, "Well, I just wish that Ava could still be sleeping in that crib." We snuggled. They decided to help Daddy carry it and put it away. We Benton's are a team.

I found an ugly truth. I am not able to deal with heaps of stress. I retreat or get angry. kids in each other's business + a broken A/C and I am at my limit. I begin to worry about money, scheduling, etc. Then bam! I am so angry about how Ava was treated at the hospital by some of the physicians that it affects my interactions with my children. I am quick to anger and my temper is short. It's like if they tap into what would usually bother me, annoy me, it opens up a big loud voice. I am ashamed and frustrated with it. I don't want to be this way. I hate that I am and that they have a Mommy that is like that.

Last night our Bible story was about Moses loosing his temper and not obeying God. Allan asked the bugs if they ever lost their temper. "No". I said, "Do you know what temper is?" a chorus of, "No!" Daddy explained. Alexa said impishly, "yes". I then told the bugs that I lost my temper and I apologized to them.

It's so hard. You talk in a loud voice to be heard, and it taps into emotion that is just right there. Sometimes I don't even know how right there it is. I ask God to help me. What I need to do is forgive those who harmed my child. It's a tough one.

I just asked Dumbo to let Em, Lex and Lain know the A/C guy is coming in a half an hour so can they get dressed. I was just delivered cake and pizza too. I guess my day is off and running!

Tuesday, May 25, 2010

and so it goes

Well, I knew if I wrote about how we were having a good week last week the tide would turn. Alexa was missing her sister like crazy yesterday. One of her school pictures was of Ava in her bed at the hospital. Then she lost her first tooth, so that seemed to break things up for her.

Elaina told me at lunch that she likes Dr. Murphy (her pediatrician), but not the other doctors. The hostival that was Ava's. That's what I'm scared of. She also asked me if Eric was a baby that was ours too. She is really trying to wrap her mind around so many things. The other night she was telling me about how Uncle David talked about Ava and God and Ava was in a box. My brother conducted the graveside service. I am so grateful that we have a little one who is so young but can express herself so very well. What a blessing so that she doesn't have be trapped by her thoughts.

Last night Emmy woke up crying for her sister at 1:30am.

I absolutely hate that these kids have to deal with this. It quite possibly breaks my heart more than the loss of my own children. We just use these moments to ask questions, talk, cry, hug and pray. I don't always know the "right" thing to say, but I try my best.

After Eric died I was in Carter's with my Mom. I was pregnant with my now toothless big bugs. I happened on a Very Hungry Caterpillar outfit (one thing we used to call Eric) and just cried. Put the outfit back and kept on shopping. It was significant in that I realized then that I would go about my day, cry, then go about my day. I think the girls are hitting that stride. It's just that with each developmental leap they have to frame their understanding of their loss. We revisit, reframe and then put on a leotard and twirl.

Monday, May 24, 2010


We had a really busy week last week. I spent most of it really focusing on my jewelry making and updating my Etsy shop. The catalyst was that I had the honor of making and donating some pieces for an Ebay auction in honor of a 4 year old little girl, Susana, who is fighting a battle with cancer. Her parents are missionaries in Haiti and now back in the states to help their daughter fight fight fight. Their story has touched me. They have a (almost ?) 6 six old daughter as well. I really identify with some of the feelings they are having as they support their sweet child fight the fight of her life. To learn more about this family go to www.howcantheyhear.org . The last update I found myself agreeing wholeheartedly with what Susana's mother was saying.

So I designed a prayer bracelet for her and donated other bracelets as well. If you would like to assist this family, please go to www.ebay.com and search "auctions for susana". There are 174 items up for bid. The auction ends on 5/30/2010. 100% of the profit goes to Susana's medical fund.

By participating, it's a small way I can bless in a way that I have been so abundantly blessed. It is an honor that God is allowing me to think and live this way. On my Esty site (www.etsy.com/shop/4ladybugbracelets) I feature two prayer bracelets, one for Susana, one for Haydon. 50% of the profit from the purchase of either of these bracelets will go to family fund for each child.

Haydon is a 15month old little girl living with Spinal Muscular Atrophy, Type 1 (SMA). It's a fairly common, rare neurological condition where the afflicted patient progressively looses strength and muscle tone. Haydon's family loves, advocates and fights for this beautiful child every day. She is a beautiful and sweet baby girl. (She's tough too). SMA was one of the very first things that the doctors worked Eric up for when he presented at the hospital. This is close to my heart as well. Haydon's story can be found at www.caringbridge.org/visit/haydon/journal .

There are many other things cooking for our family right now. The Joy-Hope Foundation is now Incorporated. Step one- check! Now we are on to the next steps that will enable us to take tax-deductible donations!

Our family was one of the featured families in my Alma mater's (Grove City College) Alumni magazine, The Geedunk.

There are still a couple other things in the hopper, so to speak. So more to come later on those.

As for our family. I am happy to say that this past week the black cloud around the house was a little higher and a little grayer. The emotions of grief were not so intense for all of us. There were breaks in the battering waves. It was really nice. This week Elaina hit a developmental spurt and is thinking and processing what she can understand about Ava and her life and death in a new light. That always leads to tough knock you on your rear questions. I choose to look at that as good.

Right now Emily and Alexa are now focused on "Z" week at pre-school and have mixed emotions as to whether or not they want summer vacation to come. They really love school and don't want to miss their teachers, who have done so much for them this year by supporting, nurturing and loving them. (They taught them lots of stuff too!) Then again there is Kindergarten on the horizon, so of course there is the lure of getting bigger! (We are going to give Homeschooling a whirl next year!!!!!!!!!!!!!!)

Allan and I are desperately trying to squeeze out time together in the small windows we have with each other. We are trying to keep the household going, work, grieve, work at the Foundation, and have some fun as well. Right now it may seem crazy busy, but it feels balanced.

Why? Because I actually spent some time in prayer. You would think that I would be more disciplined about that by now. Ugh.

Elaina is alone and it is quiet. That is my sign that I am done blogging for today.