Saturday, January 30, 2010

Dress Up

WE ARE ON THE MEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It is so nice to see the Bugs play together like they haven't seen each other in years. I have officially swapped throw up buckets and tea cup for putting ribbons in hair and helping each princess become more beautifuler.

It's a cloudy, grey and cold Saturday, but for the first time in a long while I don't feel like the weather matches my mood. I can't express how much I enjoy the sounds of clomping dress up shoes and far off sounds of Royal games.

Disney didn't only put a "bookmark on our sadness" (to borrow a phrase from a dear childhood friend), but it increased the imaginative play and fantasy in our house. Our games are full of swashbuckling fairies trying to save Wendy from Captain Hook. (I never said the story lines make sense). Our trip opened up their worlds and took them out of the rut of constant grieving into trying to live in light of grieving. It's a tough transition to make. It involves letting go and moving on. But when Captain Hook has to fight Peter Pan and Sleeping Beauty, Cinderella, and Alice, you really have no choice.

Wednesday, January 27, 2010


Last night was my first night back to work. It was short-lived. I thought I was coming down with a cold but 1/2 hour before Iwas to leave I developed a fever. I left my shift early only to get a text from Allan saying that Alexa just threw up. By the time I walked in the door, she had thrown up a second time. About 10 minutes later, Emily was throwing up. And so it went all night long. Every ten minutes or so Allan was in their room tending to their needs. I tried to get out of bed to help, but couldn't.

My sweet husband only slept for an hour last night, interrupted. Every time he got tucked in someone would cry. Part of the problem was that they weren't keeping anything down so we couldn't give them anything to help ease the discomfort of the fever. By 4am I went into their room and tried to comfort them. I cold barely move. I laid down on the floor thinking that if I stayed in there Allan could get some sleep. Alexa got out of bed and rubbed my leg. My sweet little bug.

So we made a trek downstairs to the couches. I put on a show for them so that they could focus on something other than being so miserable. It lasted about a half an hour to 45 minutes before Allan came down to bail me out. i was in over my head.

Allan is exhausted. Caring for 3 sick people and one well rested 2 year old on no sleep is not an easy task. But he did it and all the laundry that comes with it.

By the end of the evening Emily made cameo appearances off the couch to tuck me in or give me a sip of Gatorade. Alexa soon attempted to follow suit. They had one bite of banana before bed and kept it down. I hope they stay on this upswing.

While Allan was bathing Lain the big bugs and I had a great talk about Ava. It is one of those things that I will forever cherish. We have been so busy and preoccupied I forgot how important moments like those are needed.

During one of my many baths in my feeble attempt to get comfortable, I began reading a grieving devotional book. It wasn't long before I got pregnant with Ava that I donated my large volume of my grieving books. So here is one I never read, on my nightstand. (It would be safe to assume that some little hands unearthed it from my night table drawer). I thought, well I have nothing else to read. Right there in front of me was a devotion on when to move fast and when to slow down. The scripture reference was Ava's scripture in Isaiah 40.

Low and behold, what have I been struggling with lately? The flow of our lives, needing things to happen, the need to keep on going. I fear that if I loose momentum then I will never reach my goals. But "They that hope in the Lord shall renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint."

Right there on my nightstand for who knows how long. Ava's verse is actually ours too.

Monday, January 25, 2010


I made our weekly calendar out last night, something I haven't done much since November. I never knew what was next. It's full of our regular routine. Alexa noticed it first thing this morning. The days have School, Mommy Work and Daddy Work. The calendar is normal, but I feel anything but.

I realized that half the school year is over and I don't have a routine. I tried to go back to work after Ava was born, but then she was hospitalized. I've lost 5 months, and seemingly oh so much more. I had all these grandiose plans of what life would be like when bigger bugs went to school and Lain and I would have to fend for ourselves. I then found out I was pregnant and those thoughts changed. So now I guess we are somewhere in between. Every time I hear "you have your hands full" I politely nod. I do. We still have the business of our lives, but my hands are far from "full".

Whenever I feel overwhelmed by the bugs, I feel a twinge. Like, is this still overwhelming? It was way harder in the fall. Ava never really got off of square one, nor did I it seems. Yet here were are. Allan is officially back to work. I start tomorrow night. Those 5 months are blurry and yet we are right into the thick of it.

It's hard to think that it will be fine since I don't feel capable of meeting the demands to those requiring my professional assistance. I will have to handle it the way I did after Eric died, I suppose. I will just keep trying. I will pray and someday I may feel competent. I just wish I could make bracelets and build up the Foundation and Mommy those I still have.

Saturday, January 23, 2010

Bracelets and Revelations

I took the plunge and set up an Etsy shop for our prayer bracelets. I am really excited to be able to share these with you. Making them brings me joy. I hope to be able to make some for someone else in need. If you would like to check it out please go to

Today I had a lot of time to think about many thoughts. Some were not so pretty and some were not so focused on the ugliness of my humanity.

First of all I watched our surviving ladybugs. Today they played, fought and created elaborate games with a cast of new characters as gratis Disney. As I watched them I found myself amazed at how much they have changed while I've been checked out so to speak. I can't say that I am "checked in" yet, but I am trying to be present.

I am so proud of those little ladybugs. They adore each other. They grasp so much and yet they fight and cry about the most mundane of things. Really that's OK. It's what they should be doing. In the midst of our not so normal life, they are acting normally.

Specifically Elaina was cracking me up today. She seems to have exploded developmentally. Her speech has always been clear and top notch, but today I noticed her sentence structure is even more complete that it was the other day. I love how you can joke with her and make and off the cuff remark and she will have a quick and often witty retort.

*BIG ELAINA NEWS* Today she told me that she wants to potty train. She knows that she's almost out of diapers and Disney is over so we have been gearing up for it. I need her to be willing. Potty training twins who were leery and caring for a 3 month old was really not fun by any stretch of the imagination. However if Lain is not on board, potty training a head strong nearly 3 year old while Mommy is grieving will blow that out of the water.

While I am THRILLED at the prospect of saving myself 40 bucks a box of diapers, I am sad that I am rapidly moving out of the baby department. Before we became pregnant with Ava I noticed that things around her were becoming easier in some regard. Then they got harder the more pregnant and tired I became. Then Ava was born and they became complicated. As her life progressed the more complicated things around here became.

Now we have these 3 awesome ladybugs and I seem to have missed a year with them. So as we try and get back to our regular programming, I am noticing that I have no more babies. Baby items are going away. All the paraphernalia and now soon there will be no more diapers. Now listen, I've been changing diapers for 6 years so I'm not too heartbroken to be done with that. It's just that it wasn't my choice to end that NOW.

Today was an opportunity to try and sort out some thoughts. I realized that I know how I feel about death and where I stand with God in all of it. I know realized how deeply sad I really am and how I just don't know what to do with it. I'm not confused about Ava's death. I'm amazed by her life. The sorrow does not have language. That's tough.

I also realized that I have learned so much about how to support others in the middle of chaos. So many of you have come forward to support us in ways too many to enumerate. I need to take heed and step outside of my routine and do the same for another as the opportunity presents itself. I think I fall short in that department. I am in awe of our support and so incredibly blessed by you all. It truly is one of the reasons that I, personally, can keep on. Through all of you God has worked in our lives in amazing and wonderful ways. Thank you.

Thursday, January 21, 2010

First Day of Normal?

I was all geared up to try and get a regular routine going today as Allan was going back to work. Then I had a dentist appointment. My parents came over to see the bugs (at bugs request). Allan didn't make it very far in the work day. He got pretty sick and has been in bed or on the couch all day. I'm worried about him being so sick, but I know he will be ok.

This is throwing Elaina off though. Tonight there were lots of questions about Ava again. She was talking about her boo boo that she got on her knees in Disney. She was talking about God healing them. I told her He was. She looked at me and said, "Now?". I told her yes, He was working on it. She said, "God helped Ava too?" I said yes. Then with a huge twinkle in her eye she said, "Her is coming back to us?" I had to tell her no, Ava is never coming back. She was deflated, but not for long. Apparently Emmy had an interesting animal on her jammies.

When I was tucking her in , she did her usual questions about Ava in Heaven. Tonight she juxtaposed her questions with Daddy's sick. I told her that Ava's body was broken and asked her what kind of sick Ava was. She said, "Pink". I told her that Ava's WHOLE body didn't work. Daddy is sick but he will get better. She wanted to know why we are here/ I told her that God has other plans for us and it's not time for us to die. She said, "Ava has a new body." I said yes, but our bodies are ok. Mommy's body, Daddy's body, Elaina's body they still work. "My body still works." Yes.

Alexa asked me today who would take care of them if we had to die. Emmy promptly shushed her. I told them that we would do everything we could to stay with them and that we don't want to leave them. But we would have a plan for them. I told them that I can't know what God's plan is, but I know that they will be ok. I told them that when I was their age I used to wonder what would happen to me if my Mommy and Daddy died. I knew that they had a plan for me and that I would be ok. I know that they would too. Emmy seemed to feel better about me telling her that I would do everything I could to stay with her, but then told me,"I just don't want to talk about that though." I told her that if she ever did, she can ask me. But she can't keep Alexa from talking about hard stuff.

Sometimes I don't want to teach them how to sort out their own feelings, especially since I need time to sort out my own. I wish I could have time to do what I need to do. It's harder trying to keep it together. Sometimes I just want to shut down and hide. Others I just want to hold my baby. Smell her. See her little face and squeeze her finger. I get so sad thinking about how sick she really was. I wish that wasn't her story. I wish it wasn't Emily's story. Alexa's story. Elaina's story. I wish it wasn't my story or Allan's story.

I was realizing that while another child never fills the void of the deceased child. A healthy baby just helps. I am so sad that I can't have any more children. I am glad that the stress of wondering if my baby would live. But it would be so nice to have one more healthy baby. I just wish that would happen, but it can't.

So I wonder what could possibly help? What does God have in store for us? How will He help us ease our pain? Disney was great. It's given the girls a chance to deal with their thoughts while they encrypt new memories. But while we had a break, the grief, always with us, is hitting hard as we try to run the house, care for the kids, accomplish daily activities.

Wednesday, January 20, 2010

Long Catch up on Disney

We made it home! I am so happy to be able to use the computer as I wish now. Disney charges $10 a day for Internet access so I took a hiatus from the blog.

Our last three days in Disney were as eventful and fun as the first three. On Sunday we spent the morning in Hollywood Studios. We got a chance to see the Ariel and the Playhouse Disney shows. We were planning on seeing the Belle show as well. However the Ariel show was a little intense and the girls decided that they didn't want to see it. We also got a chance to meet June, Quincy and Handy Manny. Meeting Handy Manny was the most exciting as we got to meet him on my Dad's birthday. The bugs love to watch that show with my Dad and spent a lot of time watching it with him while Ava was in the hospital. They were so excited to call him and tell him that they met Handy Manny on his birthday. It was really cute.

We then had a very blustery lunch and decided that we should high tail it back to the hotel. The bugs were exhausted and fading fast. Despite our sprinting efforts we did not make the bus and had to wait. The bugs made up their own games which involved running around the sidewalk. This game abruptly ended when Elaina fell and scraped both of her knees. Of course it was then that the bus came. Exhausted screaming bloody kneed Elaina and tired borderline ill Emily and Alexa boarded the bus with Mommy and Daddy who never wanted to fold up another stroller again. I was super proud that I packed a first aid kit. As we boarded the bus I told the driver that Elaina fell and scraped her knees. (I felt the need to explain the child was screaming as we got on the bus).

We were getting all arranged (no small task) and I looked up. There was the bus driver with plastic rings for each of the girls. She told me she thought that that may help Elaina forget her troubles. It worked.

Back to the hotel for a rest. Nobody slept. It was one of the warmer days and the pool was calling our names. (Well really just Emily and Alexa's. We didn't want to get cold and Elaina said she couldn't go in because "God didn't heal my boo boos yet". I told her with the band aids she'd be fine. ) The pool was heated. That was a good thing. It was blustery. We were freezing. The spa was fabulous. Once we warmed up we had to get out and freeze. Back to the room for a quick change and new band aids. Off to Mexico in EPCOT for dinner.

We took a circuitous, yet fun route. Boat to the Contemporary. Monorail to EPCOT. The girls loved it. We had dinner, and did a little shopping. I was really hoping to find an "Alice" doll or toy or even Alice In Wonderland book in the United Kingdom exhibit. You would think they would have one there since that was where her meet and greet was. Nothing. Alexa loves her. I am currently scouring EBAY. Then Lain and I rode on the Nemo ride in the sea exhibit. Emily and Alexa were too tired and unreasonable. Lain LOVED the "fishy" ride. I had a great time taking her and watching her eyes light up with wonder. (Bonus no wait we just walked on).

Our ride home was supposed to be uneventful. Wee missed the first monorail and then got to the Magic Kingdom and Resort stops as the firework display was ending. Oh look it was Extra Magic hours in the MK that night. Even the elevators were crazy full. All Allan and I wanted to do was get back to the hotel and get the kids in bed. But no, right there in front of the Contemporary was Peter Pan. A quick meet and greet, hop on the boat and away we were.

Our day was short on Monday. It was our last full day and we were all wiped out. Emily did not sleep well the night before and was still exhausted. She was also randomly warm. We drugged her and headed back to the Magic Kingdom and tried to see things that we didn't before. Nobody really wanted to do anything at all. Despite checking the weather report we did not know it was going to be so windy. $100 later in sweatshirts, the whining stopped momentarily. Allan did go on Big Thunder Mountain with Emily. She loved it. I waited with Alexa and Elaina and had a good time. I was going to ride with my parent swap ticket once Allan and Emily were done. (Lain was 3 inches too short, much to her dismay). Alexa decided that she didn't want to go. Emily didn't want to either. We panned for gold and then I decided that I would go before our lunch reservations. Emily and Alexa decided to come with me. Just before we got on the ride, Emily cried so Alexa joined in and nobody wanted to go. I got to walk across the train. I will never get to ride that ride, I've decided.

On the way to lunch we spied the "Princess and the Frog". We had no time to meet her before lunch. We ate at Tony's restaurant. When we walked in Elaina squealed "Doggie!" She loved the Lady stuffed animals. I made a mental note to get her one. Twenty potty breaks and a yummy meal. One lovely diaper and I was really ready to be all done. It was the one month marker of Ava's death and it was not far from my mind. Somehow I noticed that it wasn't far from the girls either. (They had no idea of the date or the concept of that either, but they were all missing her). During lunch Alexa wrote all of our names, in awesome handwriting, on her napkin. The first name she wrote was Ava's. She showed our waitress. Of course the waitress asked if that was Alexa's name. Elaina kept saying that Ava was in Heaven, but the waitress didn't hear. So she asked Elaina and then Emily if they were Ava.

I piped in to explain that Ava is in Heaven. I then told her that we were on vacation to celebrate our family. (Disney's theme right now is "What will you Celebrate". That did bother me on the trip. I wasn't celebrating per se, but Disney was trying to spin it that everybody who was there was celebrating something. I came up with the celebrate family line to make myself feel better the day before.) The Waitress audibly gasped and graciously left the table. Elaina wound up with a free dessert. As we were finishing up our waitress, who had no prior knowledge of Elaina's exclamation, arrived at the table with 4 stuffed Lady dogs. One was for me. I told the girls that our waitress wanted to put smiles on our faces once she heard about Ava. Emily grinned the biggest grin of the day and said "Mommy it worked."

After lunch we were off to meet Pinocchio, stalk the Princess and the Frog, to no avail. Cry about going on the Monsters Inc Laugh Floor, which we nixed. Drove on the Speedway and piloted a rocket ship. Then we were done. Back to the hotel for a nap and in for the night. While the girls slept we packed. Whoo hoo!

The down time worked and we had a great time on our last day in the MK. We met Princess Tiara and Naveen, and repeated rides on Aladdin's Magic Carpet, Dumbo, Goofey's Barnstormer, baked a cake in Minnie's House, rode the Mad Hatter's Teacups and Winnie the Pooh's honeypot ride. We explored Swiss Family Robinson's tree house and Winnie The Pooh's playground as well. We left the park and got to the hotel for transport by 3 (pickup at 4).

Elaina fell asleep in my arms on the bus 10 minutes before we got to the Airport. Emily was mostly sleeping. So we now have 6 pieces of luggage, a laptop and 3 backpacks. Two sleeping kids and one stroller to push. The $4 on the smart cart was a good purchase. Em and Lain woke up just as we were going through security, Alexa was so proud at how much she helped us by pulling a suitcase. Commence Elaina screaming. She was scared. She wouldn't get down. Emmy was falling apart. (Her medicine was wearing off and she was sleepy). Due to the excitement I forgot to take my cell phone out of my pocket and the bracelet off my wrist. Em and Lex go through security and have to wait to screaming Elaina and Mommy. BEEP BEEP BEEP. Pockets Emptied all the while I can't put Elaina down and the bigger bugs are flipping out that I am stuck on the other side. Daddy clears security. Elaina screams for him. We clear it.

Ok, that took 5 minutes. We collected our things and snuggled those who needed to be snuggled. I put my shoes on with one hand and away we went. Potty break, grab dinner, lots of crying and off to the gate. NOW everyone is awake and happy. Nobody slept on the plane. We landed 40 minutes early. We had to wait forever for our luggage to start arriving. One of our suitcases got stuck and they had to turn off the belt. The bugs were flying around like mad women. Oh look, the only person who can turn the belt on was on break. So they had to reload on a different belt. Away we were at 10:30pm. The girls transferred to their beads beautifully. Unpacking and laundry started. Bed by 1am. AHHHHHHH.

Now if I could have a vacation to relax....

Saturday, January 16, 2010

A blow out and a lesson

Who would have thought that God would speak to me through a blowout diaper in the middle of Chef Mickey. Yup right there, with the grossness on my shirt as I picked up the excited little bug to meet Mickey, a lesson began. First off: DO NOT FORGET THE CHANGE OF CLOTHES. That set us back $80.00. (Elaina needed a new outfit and I a new shirt). Lesson 2: The hand sanitizer cloths I bought at Wal-Mart, well worth the pain in the neck they are to lug around. Lesson 3 is way more God inspired I would have to say.

Our diaper bag handles also broke. We are talking the most perfect bag for a trip like this in size, weight, the way it fit on the stroller and functionality. Broken. I am now over stimulated, over tired and under coffeeed. Elaina was over Miralaxed. I have poop on my favorite white shirt, Elaina is a mess, and Thing 1 and Thing 2 are oh so very curious and tired. They of course had to follow me into the bathroom, get in my way and cry about me throwing out my shirt and Elaina's outfit. We won't even discuss the meltdown x2 that lead to me keeping a broken diaper bag. It's 8:40am.

Off we go to regroup, repack a Mickey weekend bag (yours for only $12.95 with a purchase of $50.00 or more). It's too big and doesn't fit on the stroller. I want to go home. I hate it here and all other things that go into a full blown internal (well maybe not so internal) temper tantrum. I miss Ava. Big bugs are crying, on the Monorail, on the way to the bus stop for the Animal Kingdom. We did not throw out the bag, but yet Alexa is whimpering, Emmy is sad. We now are crying about Ava. I told Alexa that we could make a choice to have a good time, even though we don't feel like it. That we could be in a bad mood and try not to ruin the time for everyone else. I then looked at Allan and said, "Mommy is going to listen to what she just said." He just said. "Good".

Lesson 3: While I was upset about the disruption in my schedule/ "Disney Routine" I quickly became sad about not having Ava with us. It was like an "AAAHHH" moment. Of course they get sad about Ava when something else tips them off. Those feelings are just right there. Once you tap into them that's where you go. For the rest of the day I could approach their grief with a new level of understanding.

Today there was a lot of fun to be had at the Animal Kingdom. We met Pocahontas and Flick from "It's a Bugs Life". We saw the Lion King Show, went on the Safari, saw some tigers in Asia and some fruit bats as well (ick). We came back for a rest and a nap. A rest was short lived as the bugs were wound up. We had dinner in Downtown Disney at Wolfgang Puck Express- Highly recommend it. Emmy was having a sad time. More so than usual for her. Alexa said "It's hard to miss a sister that you love so much."

So beautifully stated. So much more understood where it comes from thanks to Elaina's blowout diaper. (We're potty training that kid when we get home!)

Friday, January 15, 2010

Days 1-3, DIsney

I an effort to not miss out on all that we are doing in Disney I think I'm going to write it down. It's hard to believe that we got here on Wednesday I feel like we packed so much in that if we went home today, I wouldn't think that we missed out on much.

We haven't even tried to push ourselves and "get it done". We are heading out with tips from awesome friends in had, a few reservations and a great set up from a friend with connections for a parade. Otherwise we go in with a general idea and come out thinking, "Wow that worked out really well!".

We had the privilege to experience the best flight that we ever have taken. This was great as there was a high probability for relocation if the flight was not enjoyable for the bugs. They have never flown before. Really it was all about the gum. Now it's all about the gum and the ability to watch shows on Daddy's IPod.

We arrived early and had no trouble getting to our resort via Magical Express. Little Miss Elaina decided to not nap, since she was so excited. Who cares that she was up since 4am. We got to our room, checked things out, got settled and off to the Magic Kingdom we went. We entered the park in the middle of a parade, which was a great way to set the tone. Then off to dinner at Cinderella's Table. We were told that there would be mice and the Fairy Godmother, but no Cinderella. Imagine the surprise when we were escorted into a photo shoot with the Princess I can vividly remember trying to meet when I was little. Too bad we really look like we just got off a plane and had been up since 4am! dinner was delicious as was the entertainment. We, of course got her autograph too.

After dinner we had to ride her Carousel since she mentioned it when we talked with her. There was no wait anywhere in the park that night. So we not only did that, but we also rode Dumbo, "it's a small world" and met Ariel! (She was confused by the bigger bugs at first and they realized there were 2 of them. That always amuses us.) Then it was back on the boat and off to bed at the resort.

Yesterday morning we were off to EPCOT first thing. We had to have breakfast with the Princesses in Norway at Akershus. It was delicious! There was a bit a a glitch getting in to the park, as Allan left his wallet in the hotel with ID, and Ticket inside. The cast member at Guest Relations was nice enough to reprint tickets for Alexa and Allan without our ID. She told him that he needed to have ID on him. He said that if he had his ID then he would have the tickets.

So we sprinted to the World Showcase. We got there in time to wait for our names to be called, shin splints and all. We had a photo with Belle, and visited with Cinderella, Ariel (who both remembered that they met the girls the night before I was pretty impressed by that), Aurora, and Snow White. I really loved how Belle looked at the bugs and said, "Oh I see we have matching tea cups!"

Then we decided to make the girls ride the boat ride in Norway. They really liked the ride, but hated the theme. I am still in trouble for it. It was a little darker and scarier than I remembered. Not a good move. Whenever there is downtime or something scary, it tips off the fragile emotions that we have and someone cries about Ava. So we decided to press on and find some princesses. We really did not plan on being in EPCOT all day, but the times that the characters were appearing, dictated that we were. So we did. We found Snow White, again, Belle, the Beast, Gideon, Marie, Jasmine, Mulan, Winnie-The-Pooh, Alice, Mary Poppins. Most we happened to be in the right place at the right time. We did have to stalk Jasmine and Alice though. There were no lines though, which was great. I was so amazed at Emily when she marched up the the cast member handling Mary Poppins and asked her if she was doing autographs. So out of her character and so cute! Emmy has taken responsibility for meeting what ever character she can find and getting every one's books signed if someone is too scared to come along.

After the World Showcase we took the girls on Spaceship Earth. Emily and Alexa both hated it as it was too dark. Emmy eventually came around and Alexa will never trust my ride judgement again. It stirred up a lot of emotion in her. So we trudged to see Figment and never made it. We ran into Chip and Dale for autographs and photo ops. Elaina did not want to participate, but then cracked up when she saw Chip tickling Emmy. "I thinks Chip and Dale are crazy. Thems make me laugh." she then laughed for five more minutes. It was great. By that time we were all done. Off to the Resort we went. Hung out in the room for a bit and then dinner at Whispering Canyons in our Resort. Back to the room for bath and then off to the Magic Kingdom for "Wishes".

Ok so the kids are overtired. Emily and Alexa drank TONS of drinks at dinner. Nobody likes loud sounds. We get a great place by the castle- we needed to make sure that we saw Tinker Bell fly out of the castle (mostly for me, but the bugs really wanted to see that too). Things were ok, until we couldn't wait for the potty anymore and sleepy Elaina got glow stick goo in her eye. House of cards, house of cards.

We get overtired Elaina calmed down. The need for potty is growing. Fireworks are getting louder. I grab one bug in each arm and carry them through crowds of people, trying to get to the potty and back again before the show is over so I don't look Allan and Elaina in the mob. Tink flies out of the castle and we all agree it's cool. Then we're off. We made it back in time to reunite with the rest of the family. No child is happy. No one at all. Fireworks over (what I saw was awesome) and Elaina was asleep in the stroller before we got on the boat.

This morning was laid back. We hung out until the girls got restless and off we went to the Magic Kingdom. Today was Emily's day to feel sad. But we were greeted my Daisy and Pluto when we got into the park. We only had time for a photo with Daisy. While we were waiting there was a mini parade. So cool. Elaina loved that. She wasn't too into meeting many of the characters (which should be oh so much fun at our 7:25 breakfast with Mickey et al). Emmy gets Lain's book signed though, Lain really wants that to happen.

Then we took the train to Mickey's toon town. Only a 45 minute wait to meet Tinker Bell, Fawn and Terrence. Praise God for Skittles! I made those last the whole wait. This was the only wait we really had. Then we went through Mickey's house, played on a playground. Then lunch. We ate near Dumbo. There were no tables. An opportunistic Seagull can swooping in an stole Elaina's hot dog in one bite. A cast member working Dumbo gave us a voucher for another one. By the time we got that it was time to make our way to our special seating for the 3:00 parade. (Thanks to a friend of mine!)

Our seats were awesome. The girls got to play with Hula Hoops while they waited as well. We caught the tail end of a show in front of the Castle as well. The parade came right next to us and Emily got to high five EVERY character that came by (except Captain Hook and Jafar). Can you blame her?

Everyone was getting grumpy before the parade, but not anymore. That totally turned them around. We decided to check on Pooh's ride. Fast pass obtained. Off to a visit at Minnie's house (Elaina was talking about it all day). Then Goofy's Barnstormer. OK our Kids LOVE roller coasters. They were WIRED and ready for more. They all want to go on it again. (It was pretty cool especially for a kiddie coaster). Maybe when we come back they will be tall enough to go on Space Mountain with me! We ran through Donald's Boat and then off to Pooh's ride. Everyone loved that too. After this ride Alexa told me that she really misses Ava, but she's not crying, just missing her. Why stop there? Mad Hatter's Tea Cup ride. The bigger bugs decided to try and really spin the tea cup and say boo to me so that I would be scared. (This steams from Uncle David liking to get me dizzy and scaring me when were little.) Then off to Alladin's Magic Carpet and time to head back to the Resort. That's when we stumbled into the Dance Party parade. Conga in the streets! The girls loved it.

Now all are tucked in for the night. We have been talking about how it's ok to have a great time and not be sad all the time. It is. We are learning to have fun in spite of our grief. The grief is real and just under the surface, but the fun is real too.

Tuesday, January 12, 2010

And We're Off!

We are on our way to Disney. On Sunday night there was a benefit concert "Music for Memories" at our church to help defray the cost. The artists were The Junebugs, Adam Randolf, and Caitlin Jane. (Allan's good at all the links and stuff, so he'll do that later). I have to tell you how honored and blessed we all felt during that concert.

Honestly, the thing I was most excited by was to see the potential of our Foundation unfold before our very eyes. I kept thinking how I can't wait to be able to bless another family as we have been blessed. How the Joy-Hope Foundation will hopefully give other families whose children have died a chance to get away and begin to build new memories amidst the sadness.

It gets you out of the stressful day to day struggles and gives you something to focus on. Something positive. I know that that pain won't be gone. There will always be a mark, a twinge. But the agony dissipates. A vacation in the throes of the agony gives you a breather to move on when the weight of the day presses down. I can see our little ladybugs starting to crumble. I can feel that I am too. Allan is the rock right now. We need that. It will fluctuate. For now it's him.

To see the gleam in their eyes and hear the excitement in their voices is enough to recharge and move on to the next phase.

Tomorrow, Ava would have been 5 months old. I guess since she can't be with us a good way to celebrate her is to begin to rebuild our memories, to take a step out in life as the Benton's after Ava. It's a process of redefining and assimilation. We are called to it. We can do it, even when I just don't think it's possible.

For my own need to stay on task I am going to list what I want to work on when we come home. I'm in the phase of grief where I think it and then can't remember what I thought. A day seems like a week and I can't remember yesterday. Right now our lists have lists. Here's a new one: finish thankyous, work on Foundation some more, get Esty site for bracelets up and running, Allan go back to work, Amy go back as well. Go to the dentist, make well-child appointments for some bugs, clean out Ava's room, unpack, do laundry, learn how to "run" the house again, and try to train this old, out of shape and weary body how to run Ava and Eric's 5K. OK it's out there. I must be accountable!

For now, off to Disney to meet some Princesses, see some tigers and giraffes and Tinkerbell!

Friday, January 8, 2010


Just when you are going along swimmingly, the phone rings. (OK, in all honesty we weren't too swimmingly today. The girls were bugging each other all day and Elaina was having a rough wake up from nap. Tears, needing to eat dinner practically on top of me, wanting milk, no I don't, yes I do. You get the chaos).

OK, now the phone rang. The caller ID said Nemours Foundation- an ID we would rather not have to deal with ever again, in all honesty. It was Ava's Neurologist. I extract myself from Elaina to take the call (cue screaming teething 2 1/2 year old in the background).

Ava's results from the muscle biopsy testing that was delayed is in. Our dear sweet baby girl not only had a Complex IV Deficiency, but a Complex I as well. Apparently Eric did as well, but we didn't know that until today. Her mitochondrial depletion in muscle studies came back. Ava only had 7% of her mitochondria. She was 93% depleted. Eric was 99% depleted.

I knew it was bad. DUH, do I have two of my five babies? I knew that Eric's results were so incredulous that the Geneticist at CHOP wondered the validity of his testing. They did not think that he should have even been alive at birth. So folks, here it is. We have two awesome kids in Heaven who seemed to defy some odds.

How do you live with only 1-7 percent of your energy makers? Why do you live that way? This news is so fresh it hasn't even sunk in yet. I'm sure it will take a long time to get through some of the questions that are forming a funnel cloud in my brain.

We are so glad to have the opportunity to meet these heaven bound bugs, but right now I wish I never ever had to care about mitochondria, DNA testing and all the other meetings we are going to have to have. I just want my miracle babies who never should have lived at all. (At the same time I am glad to had them while I did).

Thursday, January 7, 2010

Lessons from Some Pretty Special Bugs

I think the hardest thing for me to deal with right now is to see how much the bugs love babies. Not only that, but to see how good they are with them. When they are around them they come alive. All of our friends babies help to fill a void that they are feeling. Each time one of them squeezes one of our bugs fingers there is a little recognition and I can tell it feels right.

I wish that they could experience "big sistering" again. I wish they didn't have to experience this level of pain and sadness.

Alexa saw pictures of one of our friends' new babies on Facebook. She had wires on her. She asked me "Why does she have medical stuff on her." I told her that she had trouble breathing when she was born and the doctors at the hospital had to help her. Now she is doing OK. She then said, "So God helped Andrew's baby sister...but not mine".

I tried to explain to her that God was helping Ava too. It's just that she was born broken and Andrew's baby just needed extra help. I tried to explain to her that when she was born both she and Emily had "medical stuff" on them too. (They needed to stay in the NICU for 10 days as they were born at 34 weeks gestation.) I told her that the "medical stuff" helps people and that God helped her. She liked that, as did Emily. But it was short lived. They really just want Ava with us. But didn't we all?

There is such a difference. There are so many stories out there about miraculous healing in unlikely conditions. People surviving an accident. Doctors getting there in the nick of time with just the right treatment. A fluke piece of plastic stopping an injury from being fatal. There are so many stories. These are of people who were not born with an underlying condition with a terminal diagnosis. There are even stories about miracles for those with a terminal diagnosis, but the miracle is in the secondary issue, not the terminal disease.

God does preserve life. He restores it. When Jesus walked this earth He restored people afflicted with inborn errors, as the geneticists would like to say this day in age. He rose people from the dead. HE rose from the dead. But this is what I have been contemplating: If God restored Ava to stay on this earth how would that further His Kingdom? What would have been better for Ava, to live here with us or complete restoration?

When Eric died I would think, knowing it wasn't realistic, but wishing so, that God could give him back to me. That he would raise him from the dead, too. It came out of desperation and a longing to be a busy Mommy, not a grieving Mommy. I had similar thoughts about the miscarriages I had that flanked my pregnancy with Eric. Maybe, just maybe, there was a twin and I will still have a baby. But here's the deal. If you are born, you will die. I don't want any of my deceased children to "come back to me". I don't want to have to mourn them again.

The girls have been making me think about Heaven. They are so concrete and have concrete visions of it. I am trying to be very mindful of not misrepresenting what Heaven is and what The Bible tells us about it. Allan and I have always been very intentional about answering our girls realistically and not sugar-coating what we say. And yesterday I realized that they taught me something that I never realized.

I know that I will be reunited with God and my loved ones once I die. I know that Heaven is a real place, not something esoteric with harps and angels flitting from here to there. It's tangible. It's grounded. It's perfect. But I've always thought about the people there in not a concrete way. I know that we will have new bodies, and we can recognize our loved ones. But I kinda imagined some kind of nomadic existence searching for loved ones. But Jesus has a room for us. There's the ability to talk. There are angels as well. There is really no reason that I can't think that Eric and Ava are together talking, frolicking. Why can't it be? They are in a room prepared for them. Maybe it says "Benton" on the door.

I know for certain that Heaven is my destination. But I am still on this earth and I need to keep on keeping on. It's harder some days than others. Allan and I were chosen to carry this burden, and each one of you who read this have your very own burden too. Probably one that we could never imagine having to handle.

Part of the keeping on for us is to try and get our Joy-Hope Foundation off the ground, develop and Esty site for "Ava" prayer bracelets, go to Disney and make some happy memories in the midst of the sadness, and work on a couple of books floating in my mind. These are all things that we are called to do. We don't know why. But we will follow the path that is laid before us.

Living is hard. We make mistakes. We loose our cool. We are human and mess up all the time. We question, we doubt, we praise, we get it right sometimes. The bottom line is that God is always there to guide us and help us walk the walk we are asked to. We just have to ask Him to help and let Him in.

Monday, January 4, 2010

Back to School

The girls went back to school today. I realized that I have not taken them to school and picked them up since the begining of November. Slowly we are "re-entering" our usual life. I had to catch myself a few times thinking about how fast I needed to get home so I could feed the baby. That's stinky. As we get into our "normal" routine, more things will magnify the hole in our family. I forgot about that part.

I also registered the biggest bugs for Kindergarten. Time marches on and we have to work on letting go. Sometimes soon than we are ready for. But it always has to happen.

When I came home I was greeted by Elaina who was tucking in Handy Manny Tools under the foyer carpet. Then they had to go to time-out for hitting her. Those are the moments I wish I could bottle up and keep forever.

Excitement in building in the Benton house for a Disney excursion. Most everyone can't wait to meet some various Princesses. Then most exciting thing is that the bugs can chew gum on the airplane (something which they have ever done). So cute. Gum. The solver of all problems in life.

One day at a time. My Grandmother's motto while she battled cancer. One Day at a Time sweet Jesus is what we sang at her Memorial Service. So simple. So helpful.

Friday, January 1, 2010


Today the eldest bugs and I went on a quick errand. On the way home they were full of questions about heaven, and why Ava had to die. It makes me so very sad that this is the life that they have. But I am so very proud of how they are handling it.

Alexa is visibly having the most difficult time. Emily is twinkle eyed when she thinks about Heaven and Ava being with God and Eric. She is still sad, but thinking about those things really seems to help her. Alexa's arms ache to hold her baby. It is so heartbreaking. I know exactly how she feels. Every fiber of my being makes me want to take that pain away from her. But I can't even take it away for myself. This is something she has to work out in her own time, at 5. My 5Th year was way less complicated, I'll tell you that.

Alexa wanted to know why Ava died. I told her that her body didn't work anymore so she couldn't stay on earth with us. No, she wanted to know WHY. I told her that her body didn't make energy anymore and God decided that Ava should be with Him so that she would not be in pain or suffer in a body that did not work.

I reminded them that there is no sadness in Heaven. There is no sickness and there is lots of energy. Ava is free now. She is with Jesus. Then they wanted to know if you could talk in Heaven. I told them that based on a scripture in Revelation, yes I think that you can talk in Heaven. Can we go places? I didn't know. Are there toys? If God thinks that you need toys then He will have them for you.

They concurred that Ava is praying for us while she is in Heaven so that we won't be so sad. I told them that I thought that she would want us to be happy too. They told me that she wanted to be with us.

She most certainly did. I have never seen such a fighting spirit. I told them that Ava tried her very best so that she could stay with us. I sincerely think that she did. Emily said that Eric tried hard too. I told her that although Eric did try, Ava truly tried harder. I mentioned that it's because Eric hadn't met them yet. Ava did and she really wanted to be with her sisters. That is why she tried so hard.

Elaina told me during her bedtime stalling (oops I mean "story") ritual that she wants Ava to be in the hospital so she can be doctored. I told her that she is in Heaven and she doesn't need to be doctored any more. She was good with that for tonight.

I think one of the hardest things to deal with right now is to watch their sadness and how they are forced to process such tough information at such a young age. It's not lost on me how this is molding their little minds. Their courses are being chartered. No pressure there for the absent minded grieving and impatient parents.