Talking

Yesterday I had two big conversations with two special bugs. It amazes me how God can allow each of us to help the other when the moment is just right. If we all were having a hard time I think that we would all be flopping and floundering all over the place.



We had an innocuous day yesterday. Play in the morning, play at a friends house, dinner and more playing. Daddy didn't get home until almost bath time so there was excitement when he graced the threshold as I was frantically whipping up a batch of cookies for snack at the girls' school. (I decided forget about the healthy. I wanted to make cookies with the bugs).



At one point Emily got really pensive. While the other two bugs were flitting about outside in a pile of mulch, we stole some time together. I was pretty happy that this lady bug is afraid of "buzzy bees" (you know the big fat ones that don't sting) in that moment. We talked about all her thoughts and pictures in her mind about Ava. I found out that she is bothered by the memory of the first time she visited her in the hospital. She didn't look like her baby sister anymore. i was so incredibly grateful that that was also the day that Ava opened her eyes six times; right after each of her sisters kissed her twice. (Little stinker didn't really care that Allan and I kissed her! ) :-). The memory is tough but there is good in it. Emmy smiled remembering how much her baby loved her.



Quickly our conversation turned to a little girl, Susana, that we have been praying for. She is the three year old daughter of a mutual friend who was recently diagnosed with cancer. The girls became aware of her when they saw me making prayer bracelets for her that I sent the family and hope to sell for a fund raiser for that family. Her Mommy and Daddy are missionaries in Haiti. She has a five year old sister that the bugs identify with.



Ever since they heard that Susana's Mommy and Daddy work with orphans and then learned what that means Emmy and Lexa have been trying to figure out ways to help the parentless children in Haiti have food, toys and love. Part of this is their big huge compassionate hearts. But another is that the really now know first hand what it is like to be supported by others. They know what Gods Love feels like when those around you hold you up that they want to reciprocate. This is one of the many surprise blessings that we have received because of Ava and the work that God did through her.

So while these conversations are tough, look what we can learn.

Last night Elaina asked me her usual question: "Mommy, why Ava's in Heaven?" I haven't tucked her in for awhile, so I haven't heard it.

"Why is Ava in Heaven Elaina?"

"She was sick....and um I forgot the rest...Oh! All her things we broken, she went to the hospital and then she died."

All the "things" that were broken were her mitochondria. A word that my three year old couldn't remember and wish that she never had to try.

Keep on Keeping On

I haven't written for awhile, mostly because my mind has been so cluttered and I've been trying to sort it all out. I am still sorting but things are becoming clearer one by one. It's tough work to go through this grieving process while you are trying to keep every other facet of life together too.

I'm really not complaining about that. It's just a fact and it is what it is.

We've been busy getting our vegetable garden ready, planting raspberries, grass and getting ready to put in strawberries. The bugs are all about art right now and making books and coloring are on the top of the "to do" list.

Allan is now working mandatory overtime- 10 hours a week which is putting a crimp on our time together and our energy level. It's another hurdle that we have to climb in our already full life. I'm back on-call now as well. So it seems that all components are getting back into place.

One day at a time sometimes means one hour at a time.

Day to Day

We are chugging along in our neck of the woods. Days are filled with birthday parties, playing, bike riding, garden planting, laundry, cooking, coloring, and work.

Some days some of us feel just fine. Some days it's a struggle to do those things, but we muddle through.

Yesterday I was feeling just fine, most of the day. I got to work and out of nowhere, I felt enormously sad. Seriously, I usually know my triggers. This one I have yet to identify. I know that this goes right along with grief, but I don't have to like it. I was speaking with a coworker and I told her that sometimes there are "stealth triggers". It just sneaks up on you and you don't know why or how.

I'm finding that the best way for me to handle the grief waves is to stay up after everybody in the house is asleep and take time to deal with it. It doesn't do too well for my sleep schedule, especially now that I am back on call at night, but I can't sit on this. Otherwise I will become a ticking time bomb. I don't like that at all.

I am beginning to notice how much the bugs have grown up lately. Right under my preoccupied nose. They do so much more around the house. They each have really big thoughts and they adore each other. I love that.

What comes with really big thoughts are really big questions. Really big cat fights and really big feelings of being wronged. This keeps me on my toes. Some days I'm equipped to deal with it other days not so much. Isn't that true for any Mom really?

One big change around here is that Elaina has decided that she misses out when she naps, so she would prefer to "rest" (in the loosest possible term the definition allows) with the big bugs. The rule is that if you fight, scream or clearly need a nap you must be in your own room. Mommy tells you when rest time is over. You cannot come down until the toys are put away.

Elaina takes offense to all these rules. She doesn't know where the toys go, she doesn't know how to put them away, she's tired. She's all done "sleeping". After a knock down drag out with Alexa on Sunday that culminated in Alexa yelling, "Lain I will SHOW you what bin to put the toys in!" and Elaina screaming over her, " NO YOU WON'T BECAUSE I'M GOING TO BE DOWNSTAIRS WITH MOMMY AND DADDY!", I decided to be proactive.

Tuesday's rest time arrives, i give the speech, the run down of expectations. Little Miss pipes up and tells me, "OK Mommy I won't tell sisters that I don't know how to put the toys away." AHHHH she is always so very many steps ahead of us!

I don't know how today will play out, but I just continually ask God for His grace and for wisdom so I can press on.

Faces

So Emily was having a hard time off and on today that culminated in on. She just broke down while making a book. This is not like her, really. She bottles it all up until her defenses are down and then look out.

I looked at her little face all twisted and incredibly sad at dinner. I felt sucker punched. I realized that I haven't seen that look since Disney. Prior to Disney that was the face I the majority of the day. Every day for a month, I saw my grief stricken babies and I don't think I realized how sad they looked for being caught up in my own grief. To see that face tonight was more heartbreaking. I don't want to go back to nearly 4 months ago. I want to move forward and get away from that intense full on pain.

Only God and time will do that. I just can't feel like back peddling. As much as I hate to see that grief on the face of my sweet bug, I know they hate to see it on Mommy and Daddy as well.

As much as that was and is hard to see, manage and deal with. I find that I am grateful for the fact that while it pops out, we are not in it constantly. I can see that we have made progress. So that is good.

What I also realized is how important the mission of the Joy-Hope Foundation is. Those long faces were chipped and cracked into smiles and twinkling eyes in Disney. Our family could be free to be where we were and have fun. To be distracted and to step out of ourselves.

After Eric died a generous family greatly helped us to go away. We went to St Maarten. When we came home as I would feel so incredibly sad I could picture pristine sand and blue green water. It just helped to see the beauty in the world. To be out in it. To be anonymous. It was refreshing.

I am grateful that two times now we were able to bookmark the grief and have something fabulous to think about.

Big Steps

Today is the day we take our first official step in getting the Eric and Ava Benton Joy-Hope Foundation up and running. It's an exciting step. We are on the precipice of something wonderful. While I am wondering how all this will really be possible, I can't wait to get out there and help other families.

It's funny, I don't have many expectations about this meeting, I'm not sure if it's a "here's a boat load of money let's get our paperwork done" or a "these are the things we want to do" type meeting. I do know it's the first step and getting it off the ground.

Getting the foundation off the ground will lead to a 5K and planning a fund raiser concert event. I don't know the details, I know our vision. I also know that for the better part of a year now I haven't known the details and it all seems to work better that way. God is doing this. I'm just following.

While I wish there weren't any families that would need to go on vacation after the death of their child, I can't wait to make that a possibility for those people. I can't wait to bring awareness to a disease that is so misunderstood, especially in the medical field. I hope to band together with others who are affected and see where that goes.

What's really cool is that the bugs really want to do this as well. They have a very really idea of be supported from the community and they can't wait to dive in and return the favor. I had no idea that that would occur, what a cool and surprise blessing!

Wooden Nickels

Tapped into a new and surprising emotion tonight at work. It was spurred on by having to work with a Resident who did not do very well by Ava.

Of course I knew I could wind up dealing with her at some point as she is a Resident through my hospital.

Out of the blue I got the call. She gave me the run down, I don't think she knew it was me.

I schlepped down to the ED to meet with the family. There she was. I stood right next to her and she didn't even acknowledge me.

I met with the family and did what I do best.

On my long walk back to the office (the hospital I work in is B-I-G) my mind twisted and turned. I kept trying to come up with the perfect phrase that would sum up all of our past interactions so it would be ready for the next time.

I thankfully was able to talk to my brother, a habitual night owl. I realized that I am just so flat out angry about some flagrant stupidity and lack of care that the feeling is hollow and hurt.

My Mom usually says that she is so angry that she could spit wooden nickels. I always thought that that was a dumb phrase, but I have to admit that I thought it so many times while we were at the Hospital. For some reason it really works for me. Right now I wonder if I could breathe fire.

She's been at my hospital for 2 years. Tonight I work with her. God needed me to see her. I get that. Now I just don't know what to do with it. How can you tell someone who doesn't care, "How dare you"? I would love to put three people in a room and explain to them what they have done and how inappropriate is was and continues to be. But it would do no good. The reality is that that is why I am so marred. I am appalled that the human condition is one that can be so conceited that one can't hear or listen to what is wrong. There is no responsibility taken and now we get to wonder what could have happened. While they practice medicine unscathed.

There needs to be some intentional change that comes from our experiences. It will have to be small as the change that is required is systemic and institutionally biased. One step at a time. Maybe one physician can learn how to practice with humility and a listening ear.

I can take great comfort in the fact that I am not responsible for their actions and their interactions in this world. I know that Jesus would forgive them, and I know that I must. I know that I will have to pray hard about that and pray for them too. It will be long and slow, but I know it will happen. I can't let the anger eat me alive. What does that serve? It will be a hard road I know that too. Forgiveness is necessary, but not so easy.

Realistically, what I am referring to is for the saftey of other patients as well, not just me blowing off steam because I got hit between the eyes tonight.

I do sincerely hope that the Joy-Hope Foundation will one day have enough behind it so that we can adequately advocate for other children with no voice. I write this sentiment from a sincere heart, not out of anger.

Working through

We have a way of living around here that is slowly settling into normal. I am beginning to learn of when to anticipate the emotional hiccups. Yet I am figuring out the pattern in the middle of it not before it. Of course by the time I wise up enough to be prepared, things will change. The bugs always surprise me with how grown up their feelings are. How deep their pain is.

I am finding myself frustrated with my grey cloud. I remember when Ava was with us that I couldn't bear the thought of feeling like this again. Yet here I am, functioning. Sometimes better then others, but trying to put one foot in front of the other nonetheless. It's a testimony of God's faithfulness and that He's got our backs.

This morning I was in Elaina's room changing her pull-up- yup you heard me Miss Stubborn Potty Trainer is on hold. We tried to reverse psychology her. As Allan said she reversed reversed us and is always one step ahead. She's half trained, but we told her that we are done since she is too little and clearly not ready for underpants.

OK, I digress, as per usual. I was changing the little bug. I realized that I have these little thoughts that creep in and pop out of my mind. The bugs are doing ok in the moment and I am too, but then a little twinge pops into my brain. I am happy about how well Elaina can dress herself and how we can more easily get up and go. Then bam, I think about how complicated my like should be and how I wish I were tethered to a nap schedule.

We are getting family pictures taken next week. We tried to schedule it when Ava was with us. When we got it scheduled in the fall, I had a pit of my stomach feeling that we wouldn't be able to get them done. Ava was hospitalized 2 days before we were going to have the photo shoot.

Since Eric died I have never been a big fan of a family picture or a group shot. It's never complete and while I can appreciate what I see, I can't help but notice the emptiness. My family is never going to be whole on this earth.

Yet we need a picture. We are who we are and we need to celebrate our family. So I took the plunge. We were chatting about it and Emily said, "Mommy, but Ava was supposed to be in the picture." Great. I never seem to think about how they are going to see the hole now too.

At the same time, we all go about our business (whether it's in a Pull-up or not I suppose). We play, clean, cook, bake, make books, read books, laugh and have fun. I breath a sigh of relief, we can be normal too. Then someone gets upset and cries for Ava. Elaina insists that Ava can and will come back. ( I think learning about the Resurrection of Christ threw her off) . Alexa plays Mommy to her children who are sick and have to go to the Hospital. It's part of the day and our play. Sometimes I let it roll off and sometimes it just makes me sad. Sometimes it makes me angry. They are working it out in the way they know how and I am grateful that they have an avenue for that. The bottom line is it is what it is. Press on we shall.

I really long for a time when I can post that I feel unabashed Joy on Facebook. I feel joy but it's dampened. When I laugh it feels great, and it is such a surprise. Then I'm reminded how I don't do that near enough. To relearn how to live, you have to go through the motions and eventually it all will synchronize. I just wish I could skip to the happy. Of course then you skip all the other lessons tucked within and you miss out on how God holds you together.

Incredulous

Six years ago I was making Easter candy in the kitchen humming and singing. I was content and happy. Eric had only been gone for nearly 4 months and I just had my second miscarriage. But there I was in our town house, content in God and our lives.

Six years ago I sat at my in laws table, fairly certain that I had a big secret, trying not to get my hopes up. I wasn't scared. I was full of hope and anticipation. That year I got a flower for Easter. Part of it's name was "Emily". I told Allan on the way home that if in fact I was pregnant and it was a girl, that I thought it was neat that the flower name was a girl name. (He looked at me like ok, but I'm not getting any hopes up).

I waited a week to take the test. Eight weeks later, we found out that there were two. Seven weeks after that we found out that there were two girls, and they would probably look a lot alike.

I was at peace and I KNEW that they were OK. Of course I had my moments, but the over riding feeling was hope, anticipation and excitement. My dreams were to finally come true. I felt so loved and blessed by God.

This Easter I sat at my in-laws table in the same place. I got flowers. I have no big secret. I was hit by a ton of bricks in realizing that I have to miss 2 babies now and my seemingly full table is glaringly empty. For the first time I was faced with the daunting task of missing Ava and Eric at the same time. I've been separating it. Dealing with the loss of both them is daunting and not pretty.

In Ecclesiastes there is a lot of talk about everything being meaningless under the sun. How we work and toil during our days under the sun and when we die we die. There is nothing else and it's meaningless. The there is talk about how we can honor God when things are great and we are enjoying His creation. So why would we not respect and honor Him when things aren't going our way. The writer talks about how we all are going to die. All we do is meaningless.

I really should be mad that God took two of my children from me at 4 months old. I should feel that our lives are meaningless. I should wonder how God could do this to me, my husband and my sweet bugs. Don't get me wrong I am and can be angry. I am angry that I have this path to walk. I am angry that our daughters feel this intense pain and loss at such a young age. I am so sad that I couldn't buy yellow Easter grass this year and put it in another basket. ( Each kid gets her favorite color grass in her basket. Emmy-pink, Alexa-green, Elaina- purple and the bugs decided that Ava's favorite color would be yellow since no one picked it yet.)

My days under the sun are numbered, my toil may go unnoticed, but it is not meaningless. These passages in the Bible were written before Christ. I can see in that book the loyalty to God but an emptiness in living. There was no Jesus.

Here's the thing, what happened in our family really really sucks. It hurts, stings and burns. God could have stopped it all, He could have changed the outcome. He was and is totally capable of doing so. But for some reason He needed Eric and Ava here for a brief period of time for whatever purpose He has for them, their lives and our little family. And I am forced to wonder where I get the audacity to think that He should have spared my children, living and dead, and Allan and myself from our pain.

See, God sacrificed his own SON. He allowed Jesus to be murdered and watched Him suffer. Why? Because it was to fulfill His Divine plan. It was so that we could live our days under the sun and have them not be meaningless.

So this Easter, I don't have the hope of new life growing inside me. I don't have my precious Eric and Ava. But I do have hope and joy in our future due to the promise of the cross.