Dear Evy:

promising to live a happy and simpler life in honor of my evelyn

There are sometimes when I’m between sleep and awake where my mind will wonder. This instance, in particular, I was thinking of taking your sister to Kings Island. I stood by watching her having so much fun on all the kiddie roller coasters. She had a huge smile on her face. I was smiling watching her and looked at you in my arms. You were smiling too and flapping your little arms and legs in excitement and she flew past.

This is when my mind went straight to the abrupt reality. This will never happen.  This is only a dream or wishful thinking. You are no longer in my arms and will never be again on earth. It leaves my stomach in knots and tears streaming down my face. The reality is truly heartbreaking because it is hope and dream that is not reachable. I just want you so bad to fill this emptiness. During the day, sadness is more easily remedied with work, Ava, or just life. At night, I only have my thoughts. Why at night with the darkness, it just seems to be filled with less hope. Crushed dreams.

In my weak moment, right now, I can feel a slight tingle on my cheek. The left side that I would hold you on. You are present and calming me with every little breath. It brings sweet sadness, but suppresses my thoughts that could lead me to a darker deeper anger. I am so thankful of this feeling. Sweet Evelyn you are so missed but thank you for staying near to help me to survive. I hope this feeling will continue to be present the rest of my life. You give me so much strength and make it so much easier to celebrate your life instead of to miss it with great heartache.

“Dear God, If today I lose my hope please remind me that your plan is better than my dreams…”


September 14, 2014

God Wink #5

Hey Kelly? How did the race go today? I found this tiny white feather in my kitchen this morning, no idea where it came from. I don’t know why but it made me think of Evy and her family. I said prayers for them and then blew the feather outside in the backyard. I hope all is well!

– To Kelly from her friend Chris in a text message.

Hmm…Evy’s dove? I think so.

Evy_dove

Evelyn, tonight I went over to help Andrea Brown and her family do last minute prep work for the race. They are working unbelievably hard to put this all together. I couldn’t even imagine all the stress and hours upon hours they have spent to make this event special in honor of their daughter, and now for you too. I went over to help stuff bags, which is very small in comparison to the amount of work their whole family is doing. It was also the first time I saw the signs that will go out along the path of the 4 mile and 10k. I designed them, so I knew what they looked like. But seeing them in person just brought me to tears. Your sweet little face placed on each sign. 10 signs. 1 for each month of your life.

Your whole life displayed on 10 signs.

Andrea gave me a big hug. She new exactly how I was feeling. I said doing all of this stuff for the run is great, but in reality it just sucks. We said that last line in unison. It just sucks. It’s great that we are remembering our precious babies and raising money so that other parents do not have to go through what we are going through. But the whole reason we are selling shirts, promoting a run, putting pictures on boards is because you are no longer here. Andrea said that her and Pete have those moments too.

Luckily our minds don’t allow us to focus on that reason too long. So let’s focus on the positive reason Evelyn. The reason we are going out to the park tomorrow night to set up as a family with our family and Andrea’s family is because we are celebrating your life. We get to show the world, who didn’t get to meet you, how beautiful you are, your sweet smile, and the love we have for you. The reason we do this is because you are our daughter, our granddaughter, our Goddaughter, our niece and our friend. You are all these things to so many of us.

While it is bittersweet, tomorrow we will be prepping for your big 10K on Saturday. All for you, so that we get to show hundreds of people your smiling face.

Evy's 10K Run

All days are hard. Some are just harder than others. The day’s that I cry more than once are the harder. Usually my tears come in the morning, when I’m alone or driving. If I cry throughout the day too, usually it is because of a certain memory or thought of you brings on the tears again. Tonight I was looking for pictures to post on Facebook for Grandparent’s Day. While I love looking at your photos, sometimes it just makes me miss you like crazy. It just is too much to really comprehend that you are gone. No more cuddling, sweet kisses, and Ma ma ma cries. I will cherish those moments always.

So to lighten my sorrows, I thought I would discuss some of the comic relief moments that your father and I share. Some people may think we are losing it, but this is the only way for us to trudge through without losing it. 🙂 On our way home from Children’s Hospital, with an empty carseat, your daddy and I took turns sobbing. We just had to leave you there all by yourself. The nurses had asked us if we had an outfit to put you in, and we didn’t. You had just been in a onesie and it was old and dirty. The majority of the time at the hospital, you were just in your diaper. It made me so sad that I didn’t have any clothes for you. They informed me that we could choose between some outfits that they had in stock.

The outfits were pretty, and we had to go up in size because of all the fluids your little body was holding, but none seemed to be perfect. I pictured you in a pretty white dress. Your daddy pictured you in a hand-me down camo onesie. But I had misunderstood. I thought this was your final outfit. This was just for you to be dressed in and not just in a diaper. More of a comfort for us instead of your body being bare.

But this brings me back to the camo onesie. What? Our precious little baby girl eternally buried in a camo onesie? Really Daddy, that was your first outfit choice? Your sister received it for our baby shower. The only time that you or Ava ever had the camo onesie on was when I wasn’t home and daddy was left to dress you. He would usually add a bow to your hair just so that I allowed the outfit to stay on you. So on our trip home, when one would start sobbing, the other would bring up the camo onesie just to get the other to smile. If I was crying, your Daddy would console me by saying, “It’s ok. Are you upset about the camo? We can still put her in her camo onesie.”  And if Daddy was crying I would say, “Keep on crying because we are not putting her in the camo onesie!” I know it sounds silly, but we were holding hands and trying our best to just survive. There is no book on how to handle the situation at that exact moment. Like I have said previously, I never even considered you dying until those last moments. We were not prepared. The camo onesie will forever be our little inside comic relief that we needed in that car ride.

One other moment that we found comic relief, in what most would consider another inappropriate situation, was when reading the autopsy report.  After reading the first few pages, Daddy came to check on me. We talked about a few parts and then I asked him if he saw a line that was funny. He said that he found nothing funny about the autopsy report. Well I had to explain to him on the front page as they described you, that there was one line that made me laugh. Ok, so maybe I am going crazy, but I’m allowed. Right?

The line said you were a 10 mo old girl, previously healthy, ect. Hair is  blonde, sparse and short. What!?! How dare they said you had sparse hair! It was filling in nicely! I just found it so funny that they used the word sparse. Your Daddy laughed too and agreed that he had noticed that word. To others, nothing about my sparse-haired baby in a camo onesie sounds funny, but to us, it’s everything. We need these comic relief moments to keep us sane. Just thinking about these moments has changed my mood around and I can now smile while thinking of you. That is all we really want – to simply smile when we think our happy thoughts about you. Love you dearly sweet girl!

Evy in Camo

 

Dear Evy: Prepare Yourself

August 30, 2014


Evelyn, I could feel you with me tonight. I really needed you, and you were there. This whole week, one sentence has been going through my mind. Not sure why there are some different days, times, moments I fixate on, but usually they are not the positive thoughts. But when I stopped by the cemetery this evening, I felt you next to my cheek. Best feeling in the world to comfort me when I’m thinking of the worst feeling in the world.

My fixation has been on the most dreaded words a parent could ever imagine. It was Wednesday, late evening, your last day. We were exhausted. It was the longest day. You had crashed 2 or 3 times already, one of the times your dad and I were in the room watching. They had just switched you to a new ventilator. This one was louder and shook your lungs so that they would stay open to pump the oxygen for you so that your little body didn’t have to struggle. I had to lay down. I was overwhelmed. I curled up and shut my eyes. It was a twenty minute nap. I am thankful for that nap because it gave me enough strength to get though the hardest part of my life.

I was woken up by your dad and a nurse. Instantly I jumped up and asked “Oh no, what’s wrong?!?” The nurse said that nothing has changed. Oh I could breath again. But when I took my eyes off of you and looked back at the nurse, I could tell she had more to say.

“You need to prepare yourself that she might die.”

Worst words in the world. I had never thought that would be the final outcome. I had so much hope.

She said we needed to decide on how long we wanted them to keep trying to prolong your life. I had so many questions. Well what were your chances? Are you worried about all of the fluid? Is the expensive medicine working? They said that they were worried about all the fluid building up inside of your body and that eventually the medicine to keep your heart beating would stop working. Devastating answers. I didn’t want to give up on you though. But they just kept pushing epinephrine which was the only way to keep your blood pressure high enough. After my millions of questions and the hopeless answers, I looked at you through my tears. I mean I really looked at you. You weren’t my baby anymore. You weren’t my Evelyn. You had so many needles and bandages all over you tiny body. You had gained so much weight from all of the fluids that they were pushing but you couldn’t expel. You were so swollen. You had tried so hard but now it just looked like torture. I knew it was time to let go. It was time to say goodbye and let your little body rest.

So as those words resinate in my head: “You need to prepare yourself…”, it was nice to really feel you with me. I need more days like that Evelyn. More times to feel your sweet breath or your soft skin touching my cheek. I pray to you daily to give me strength and to watch over the three of us here on Earth. I don’t pray for you because I know where you are and that you have no more pain. Only joy.

Your Aunt Bug just sent me this song and it seems fitting. I know you are dancing and cuddling up on Jesus’ cheek with your slobbery open mouth kisses 🙂 Love you so much. Goodnight sweet baby girl.

http://youtu.be/gw1h7wPkH1w


August 26, 2014

God Wink #4

This God Wink comes from my dear friend Shelby Baxter. Here is her story.

This past weekend we were boating and saw a beautiful bald eagle fly from a tree on the Kentucky side of the river. Having never seen a bald eagle in the wild before I was amazed by its presence. It immediately made me think of Evy and singing “Eagles Wings” at her funeral. I vividly remember sitting there singing the hymn as you and your family prepared to leave the church just moments after you had shown such poise and love by speaking about your simple, laid back Evy. I wanted so badly to be able to do something to ease your pain, but it was YOU comforting a church full of hundreds of your family and friends.

As I continued to watch the eagle fly up river I thought of your sweet baby and the lessons you have unknowingly taught me in the past months. Imagine our surprise when we saw ANOTHER eagle swoop out of the tree and proceed up the river bank following the route of the first. At the sight of the second eagle l thought of Ellie. I don’t know exactly how I feel about signs but what were the chances of seeing not only one, but two bald eagles that day? Maybe this was my mind manipulating my feelings because I had talked to Andrea and knew you were spending time together last week-maybe. But I prefer to take this as just another lesson I’m learning from all of you. Andrea and Beth-while I do not like the circumstances that brought your families together, I love that you have forged a friendship and support system. I am so very thankful that you have each other. Thank you both for showing me such grace, fortitude, resolve and strength. I do not know that I could ever accurately put into words the admiration I have for you. I thank God to have the privilege to call both of you my friends. Thank you for guiding me to be a better person.

X

Shelby

Thank you Shelby so much for taking the time to write this to me. I just love hearing new Evy stories and how she has affected people and that she is not forgotten. Love you.

We sent lanterns up to the girls on Sunday in memory of Ellie's Birthday.

We sent lanterns up to the girls on Sunday in memory of Ellie’s Birthday.

Evelyn Sarah LeggeSweet little girl, it has now been 3 months since we’ve held you in our arms and said goodbye. It’s crazy that it has been so long already. At first, we couldn’t look anywhere in the house without thinking of you. It felt so empty. Sadly life has gone on and in our day to day routine only certain memories are triggered. Sitting here writing to you, I look around and can see you trying to climb onto my lap or trying to find the littlest piece of dirt the sweeper didn’t get or trying to get into the dog cage. You wanted into the dog cage just as badly as the dog wanted out. I would yell Eeeeeeevelyn. You would just turn your head around and give me a look like, “Who me? I’m not doing anything?”

These three months have gone by too fast. I hate the thought that in a few more months you’ll be gone longer than you were alive. That we will have to live our lives longer without you than with you. 10 months was just not enough time. As I sit and struggle to type through my tears, I’m reminded of a saying that I just saw at my Tri Kappa meeting on Tuesday:

Don’t cry because it’s over, smile because it happened.

So I’m going to wipe my tears and live simple and be happy in your honor, sweet girl, because I am so glad that I did get 10 months with you. I have learned so much from you and will try my best to be a better person. Love you Evelyn.

 

Our little girl died from Francisella tularensis. 

Francisella tularensis is a pathogenic species of Gram-negative bacteria and the causative agent of tularemia.

The doctors just call it tularemia. In my research it is also known as ‘rabbit fever’. The exact cause of death is unclear, but it is thought to be a combination of multiple organ system failures.

Rabbits, hares, and rodents are most susceptible to the disease.The bacterium that causes tularemia is highly infectious and can enter the human body through the skin, eyes, mouth, throat, or lungs. Humans can become infected through several routes, including:

  • Skin contact with infected animals
  • Ingestion of contaminated water
  • Laboratory exposure
  • Inhalation of contaminated dusts or aerosols
  • Tick and deer fly bites

So the conversation after the doctor told me the preliminary results went like this (summed up):

“Does Adam hunt rabbits?”  No.
“Has she been exposed to him processing or skinning animals?” No.
“Did she eat any wild game?”  No – she has never ate meat.
“Has she been in any lakes, ponds, creeks?” No only the bathtub.
“Did she have any marks from being bit from a tick or deer fly?” No.

Well it was assumed that even though she didn’t have any marks or rashes, that it had to be contracted from a tick or a deer fly that bit an infected rabbit or rodent and then bit her. There were no other options. Laboratory exposer was never discussed.

Tularemia has common symptoms so it is hard to diagnose. It usually takes 5 – 7 days to diagnose it properly. Evelyn didn’t have that much time. By the time they became concerned that she was really sick, more than just a viral stomach bug, she died. All of her organs already shut down. Her body was just too little. I knew she was more sick before that, but I guess doctors don’t go off of mother’s instinct.

Tularemia can also be transferred by domestic rabbits and cats. We have chickens and a dog. You wouldn’t believe how many times we told the doctors we had chickens just incase that would be the missing link. But tularemia is not found in chickens or transferred by dogs.

Tularemia can be common in landscapers or farmers. Most get confused and think that because we have a garden center, that we are also landscapers. We are not. Two separate items and not to mention Evy wouldn’t have gone with us on job sites. The reason landscapers and farmers are at risk is because they can mow large fields where a caracas of an infected animal could get ran over and the particles could be breathed in through the mouth or nose. Not much of a concern for Evy.

These are the main forms of tularemia off of the CDC website. Evy’s isn’t listed in the autoposy.

  • Ulceroglandular This is the most common form of tularemia and usually occurs following a tick or deer fly bite or after handing of an infected animal. A skin ulcer appears at the site where the organism entered the body. The ulcer is accompanied by swelling of regional lymph glands, usually in the armpit or groin.
  • Glandular Similar to ulceroglandular tularemia but without an ulcer. Also generally acquired through the bite of an infected tick or deer fly or from handling sick or dead animals.
  • Oculoglandular This form occurs when the bacteria enter through the eye. This can occur when a person is butchering an infected animal and touches his or her eyes. Symptoms include irritation and inflammation of eye and swelling of lymph glands in front of the ear.
  • Oropharyngeal This form results from eating or drinking contaminated food or water. Patients with orophyangeal tularemia may have sore throat, mouth ulcers, tonsillitis, and swelling of lymph glands in the neck.
  • Pneumonic This is the most serious form of tularemia. Symptoms include cough, chest pain, and difficulty breathing. This form results from breathing dusts or aerosols containing the organism. It can also occur when other forms of tularemia (e.g. ulceroglandular) are left untreated and the bacteria spread through the bloodstream to the lungs.

Her only options would be glandular or pneumonic. Indiana has only had 13 cases of tularemia from 2003 – 2012. I have searched on several websites trying to figure out a more in depth answer or how she contaminated the disease. Her case is just rare. Most get a rash. She didn’t. Most can be treated with antibiotics and live. She didn’t. They didn’t treat her with antibiotics until the last day because they thought it was viral and antibiotics could make it worse. There are specific antibiotics for tularemia so it might not have made a difference even if she would have gotten antibiotics sooner.

I know absolutely nothing about infectious diseases and most of my research is from Google. So I could be misinformed on some of my information. If anyone has more information or has heard of other cases, feel free to let me know. It’s just sometimes hard to wrap our head around the results. It doesn’t make sense how our 10 month old contracted the disease and why she didn’t show the more common signs. Did she really die just because of a deer fly or tick bite? Just crazy.

Life has been so hard since the autopsy report. I have wrote you several letters that I just haven’t been able to post. The autopsy results were the same as the preliminary results, but the in depth reading of each organ failure has just put us in such a sad place. It’s like reliving each day in the hospital and watching it all in slow motion. In hindsight we would have done so much differently. We would have screamed at the top of our longs everyday to get more test and more doctors to look at you. I would have insisted that 104.6 and 104.8 fever for several days was more than a stomach bug. To run more test, to treat you with medicine, not just sedate you because the doctors believed your tummy hurt, when actually your whole body was shutting down and you had no kidney function while being filled with double doses of fluids.

These aren’t uplifting thoughts, but when you know the outcome, reliving the days in the hospital are excruciating. It’s like a movie on repeat that you can’t forget or change. The only thing that keeps us going is doing day to day things. We have to continue to live our lives. We do everything that we normally do and try to stay in a routine. We try to remember you happy. We look at your pictures. We still do Sunday night dinner with our friends, but more like family. We went on vacation. We have to. But not without you. You are always with us. We think of you constantly and you are etched into our hearts and literally onto our skin 🙂 You could never be forgotten.

I just love you so much and the I love thinking of the sweet memories, but unfortunately they are laced with sadness. Hopefully with a few more prayers and uplifting thoughts we can get out of our sad rut and back to picturing our sweet thoughts of Jesus holding your hand and tucking you in at night. We have another mass on Friday being said in your honor. There is nothing sweeter than hearing your name said and when said during mass, even sweeter. Goodnight sweet baby girl. We love you Evelyn Sarah.

Evelyn Sarah Legge


August 4, 2014

God Wink #3

My baby’s funeral was absolutely beautiful. I know it was a funeral, and most would think depressing no matter what. But not my baby’s. We were celebrating her life and everyone involved exceeded my expectation. They made saying goodbye to her physical self so much easier. Our priest, Father Chris Craig, who married us, came from Madison to do the funeral mass. His homily was wonderful. Jim Waldon, who also did our wedding music, had also asked the children’s choir to participate. They were amazing. They’re soft, sweet voices were perfect for my baby. The Ave Maria was beautifully sung. I asked Angie Myers to sing a song just for Evy. Angie too was apart of my wedding, of course. She came up with a compilation of wonderful songs that fit perfectly. She actually recorded Evy’s song so I can listen to it in my car. I wish I had all the music from the funeral. That is how beautiful it was.

On Eagle’s Wings played as we proceeded out of church behind Evy. It is such a beautiful song. Although I really didn’t get to hear it. I heard all of the other songs but only heard the first few lines. Between my sobbing and thoughts, I just missed it. And then we were out of church. At the Celebrate Evy I was told a wonderful story about the last song.

Angie Myers had waited for Jim Waldon to come down from the balcony after his last song. She wanted to know who was playing the violin during the last song. As soon as she asked, Linda Rechtin (another very musically inclined friend) said yes, she heard it too. She had thought Patrick Wunderlich might have been up in the balcony. Patrick also played the violin at my wedding. Jim was taken surprised by this. No one was playing the violin. Angie asked if he did something with the organ. He did not.

The violin’s played for my baby.

A total of four people had heard the violins play during the processional song. That is amazing. They said the violins played so beautifully and so loud. I did not actually hear the violin being played at my own wedding, so I feel it is fitting that I did not hear it at Evy’s funeral either. But I am so thankful that Angie Myers, Linda Rechtin, my cousin Jason Steininger, and my father Mike McCabe were listening with open ears to share their story with me.