Beautiful Souls

Beautiful Souls
Beautiful Souls of Amoeba Awareness

Wednesday, October 16, 2013

Part 18~Updates

Hello everyone~ so sorry for the delay in the posts. We were very busy the past few weeks with our Awareness Rocks event on Sept. 21st. We feel it was a smashing success! We had several hundred people attend the event, had over 100 silent auction prizes, a raffle and wonderful entertainment by JD Unplugged and the fabulous GB Leighton! A fun time was had by all! Thank you to everyone that was involved with this event, from the Volunteers to the donors, our Swim Above Water team members and O'Gara's Bar and Grill in St. Paul. We cannot adequately express our gratitude. Our hearts are so warm with all the love shared.

Although I want to continue to share our journey of losing Hailee, and what the grieving process was like, I want to take an opportunity on this post to provide some updates of value to the Awareness effort.

We are learning more and more about Naegleria Fowleri every day. It is still very much in the news. I have added a few links of recent news stories for you to view, just check out the bottom right side of the blog page and click on the links.

A timeline of the 2013 season of Amoeba is as follows:

July 2013 Kali Hardig of Arkansas becomes ill and was admitted to Arkansas Children's Hospital and diagnosed with PAM. Doctors act very quickly (as they have seen this infection before) and reach out to the CDC for assistance. Kali became the first patient to be treated with a new experimental chemotherapeutic drug from Germany called Miltefosine. Doctors also tried a new treatment of cooling her body and brain temperature down to perhaps slow the progression of the infection and give time for the brain to heal and prevent catastrophic swelling. After 55 days in the hospital, 22 of them in ICU, Kali was discharged from ACH to her parents. She continues to undergo therapy after being so very ill and in a coma for such a length of time. She has become the 3rd survivor of PAM. The only one in the last 50 years! She is our living miracle and we are so encouraged by her recovery from this! Swim Above Water is a part of The National Advocates for Amoeba Awareness, and on a recent conference call with the CDC heard that they too are encouraged by her recovery, however there are many unanswered questions and much research still needing to be done. They will inform us as research is complete and more answers are available. Shortly after Kali's diagnosis, the family of Davian Briggs stepped forward to say that Davian had died 2 years ago after swimming in the same freshwater water park that Kali had, and he had also been treated at Arkansas Children's Hospital.

Just a few weeks after Kali became ill, another little boy-- Zachary Reyna, age 12, from Florida became ill and was admitted to Miami Children's Hospital. He was diagnosed with PAM. The experimental medication was sent to Miami Children's for Zachary, and doctors from Miami contact doctors from Arkansas to try and duplicate the treatment plan that had at that time seemed to have saved Kali. Sadly, the treatments used for Zachary did not work. Zachary passed away on August 26th after a strong and valiant fight. We have followed Zachary's story and are in touch with his family, as well as Kali's family. There is obviously much work to do, because the efforts did not work for Zachary. Zachary contracted PAM while mudding and being pulled behind a 4-wheeler in ditch water near his home.

In the time since Zachary's death, we have learned of another little boy from St. Bernard Parish in Louisiana named Drake Smith Jr. He was just 4 years old and had been visiting with family in the Parish when he fell ill. He had been playing on the slip and slide in the yard of the family home. He was found to have had PAM as well, but died from the illness. After, research was done on his exposure to freshwater and the slip and slide was the only exposure. Testing was done on the home and NF was found in the water system in the home. Further testing showed that the public water supply in St. Bernard Parish was colonized with NF in several test sites. The city put out warnings, and treated the system. At this point, we have not seen reports confirming that repeat testing has cleared the colonized NF from the public water system in St. Bernard Parish.

The CDC did confirm and the family has also asked for prayers for their son, Able. The family has asked for privacy so we don't have very much information other than he has been confirmed to have PAM, and he is from Texas and he is 8 years old. The amoeba appears to be cleared from his system after receiving the experimental drug however significant damage had been done. Latest reports stated that he needed a lot of therapy and family continued to ask for prayers.

Two years ago, two adults from DeSoto parish had died from PAM after contracting it by using tap water in a net-pot sinus rinse device. After the confirmation of Drake Smith Jr. in St. Bernard Parish, the DeSoto Parish did some testing of their public water system and did confirm that they found NF in several testing sites throughout the system. They put out public warnings and precautions and also stated there have been no PAM cases in 2013 from DeSoto Parish.

As you can see from reading above, our message is becoming broader. It is just not from shallow, hot lakes and ponds. This amoeba has proven to infect in many types of water sources. Small and large lakes/ ponds, rivers, hot springs, tap water, ditch water.

The current message that we have for you, that is supported by the CDC, is that you should refrain from getting freshwater up your nose at all. There are links on our and website to the CDC where you can find recommendations for your tap water or recommendations for private well owners. We are so concerned about this amoeba being able to colonize (take up residence) in a public water system. It can be very difficult to destroy the amoeba once they colonize. Many times public water systems get their water source from freshwater sources. In the case of St. Bernard Parish, they get their water from the Mississippi River. Flooding in the area from hurricanes might also be a potential complication. Research continues on this as well.

There will be much more to come. Our only goal is to help you to be safe and educated on the risk. We do not mean to scare anyone, as infection from this amoeba is not common. However, the amoeba itself is very commonly found in freshwater sources and is showing up in unexpected places. It is hard to tell where it will go from here and how virulent it will or can become. Prevention is the best thing to do right now.

Thank you for reading, more to come...


Sunday, September 8, 2013

Part 17~ Days turned to weeks

Before this weeks post, I want to make sure everyone is aware of our event in a few weeks to raise awareness for Amoebic Meningitis. I am attaching the flyer here. You can get tickets by going to our website, click on events, Awareness Rocks and there is a drop down menu there to buy tickets. You can also become a title sponsor on this page. Space at the venue is limited, so hurry and buy your tickets in advance! GB Leighton will be the entertainment, and they are........ AWESOME !  We are also still in need of items for our silent auction as well as bigger ticket items for our end of the night raffle. Thanks to all that have contributed and that are coming out to the event!

Back to 2008~
It is amazing how the days start to turn to weeks. We paid off the funeral expenses and spent time designing Hailee's headstone for the cemetery, and got that ordered. Our goal was to have it in before the winter. We also ordered and received the keepsake jewelery. Justin a cross necklace with some of Hailee's ashes in it, Marcus a thumbprint necklace, Chad ordered both a thumbprint necklace and a urn necklace, and I ordered a heart shaped necklace with ashes and a thumbprint ring. These items would prove extremely helpful to us in the weeks and months ahead.

Exactly 4 weeks after her death, we faced going through Hailee's 12th birthday without her. It came up very quickly as the days all blended together. My wonderful co-workers planned something very special for Hailee's birthday. There would be a tree planting, a butterfly release and music for those that I worked with and our family. Following that, we would go to the cemetery and out to dinner.

Her birthday was a very nice day. Slightly partly cloudy in the morning. I worked that day in the morning, of course my mind was elsewhere. I was excited and nervous for the tree planting. Finally, at about 2pm, the event started. My co-workers presented me with a framed poem, and played some music while one of them sang. Pastor Ron Gerl, from Parmly, shared prayers and thoughts. During the short ceremony, it stated to rain.... pour rain actually. Some umbrellas came out, while other just stood and let the rain run down on them. The tree was a flowering crab, and ironically the name of the tree was "Royal Raindrop". How fitting.

We went inside after and greeted and talked with people and had a few refreshments. It was really beautiful and nice to gather with people again. After that, we went to the cemetery to visit Hailee, which was hard because of course her headstone was not in yet. We made the best of it. Then, we went to dinner with a group. Someone had been thoughtful and brought a birthday cake. :) We sang her Happy Birthday.

It was also right around this time that we began talking about the next big change in our life. My Grandma Carolyn, as I mentioned in a previous post, was now living in the Assisted Living at Parmly. Her home had been vacant for about 2 years. My family was looking for someone who might what to stay at the house for the winter and their only expense would be to pay the heat and electricity. When I heard about this, my mind immediately went into action. It had been a dream of both Chad and I to someday live on the property I grew up on. I wondered... should we raise our hands and stay the winter? It was getting increasingly hard to stay in our house. Not so much that Hailee's room was there but more so that we saw and heard her friends playing and riding by. We saw the bus go by and not drop her off. We began to feel like we might not stay there. Although I could not imagine leaving the house, I became excited about the idea of moving home to my grandparents farm. (By the way, my parents live in the property next door, so I literally grew up on this property).

The only hard part was that I didn't want to just stay at the farm for the winter. We would need to negotiate a way to buy the place at some point because we just could not justify selling our house, moving to the farm and then in  a year down the road have to move again. We began the discussion with my parents and my Dad spoke with his family. It was a large discussion, because I have a large family, but everyone was in agreement that we could go ahead and move in, and down the road work toward buying the house and a parcel of land. So.... with that we started planning to move. It was a BLUR, to say the least. The first weekend in November was when we would move. It was actually opening hunting! The boys hunted in the morning and evening and we moved in during the day. In the weeks prior to that, the family got together and cleared out the house of all of Grandma's things (except the kitchen table which Grandma said had to stay with the house, and a few odds and ends that no one took. We then came into the house, painted, cleaned, cleaned and cleaned. We got it liveable again after being vacant for 2 years.

Also in this time frame was Halloween. It was awful. Halloween was Hailee's absolute favorite!! Here are some photos to prove it:

The morning of the move is when I packed the first box. It was mass chaos. It very much resembled our life at the time. We threw things in boxes and our friend Joe came over with his giant trailer and we loaded it up, with no real order or plan. It was nuts. We got what we needed to get by (which was almost everything because Joe's trailer was huge). We packed up the cats and the dog and we pulled away from the house. I could not believe how easy it was to do it. It felt strange, and a little scary, but it felt right. And do you know what? I could honestly feel Hailee coming with us. I felt her as we got to the farm and started setting up the house. She came with us, never left us. She did not stay with the house, she stayed with us. <3

We got into the house as best as we could, which was actually not exactly what Marcus and Justin had wanted. We were moving them away from their friends too.... which was not fun for them. However, Marcus could drive already so that made it a bit easier. There was a huge transition, though for them.

As we settled in that November, we prepared for our first Thanksgiving without Hailee. It would be at the farm, and we would bring Grandma Carolyn home for the day to her home, for Thanksgiving.

More to come,


Monday, August 26, 2013

Part 16~ celebrating Hailee~5 years- getting back to work

I want to say that I think we made it through last week pretty well. Friday Aug. 23rd marked the 5 year Angelversary of Hailee's death. It was such a hard week and day, but it was made so much better by being able to spend time with our family and friends that evening for a BBQ and a beautiful candlelight vigil... complete with beautiful music by Mark Kuefler. Mark also sang at Hailee's funeral and has been a friend of ours for many years. We had somewhere between 80 and 100 people present for the event. During the candlelight vigil, many friends and family got up and spoke of their favorite memories of Hailee. Former teachers, classmates, grandparents, friends.... all who had the most wonderful things to say about precious Hailee. It truly warmed our heart.

The morning of the event last Friday, I think Chad and I were both freaking out a little bit, wondering if we were doing the right thing. After all, it has been five years and should we really drag people back into that pain? Would people come? Would they think that kind of a celebration was outlandish? Our nerves were getting the better of us. In the end, though we realized a few things.

1. People came. They wanted to be here.
2. People had things they wanted to say and share about Hailee in that setting.
3. We will never be able to celebrate an 18 birthday, a graduation, a wedding, a birth.... this was the last "big" thing we could do for our girl.
4. We are loved.

Stop and think for just one moment how much other people love you. If it is not clear to you... look a little harder. Put yourself out there, make yourself vulnerable and let the love of others surround you. It will envelope you in the most comforting embrace. You just have to let go, and let people in.

We made and gave out some book marks with Hailee's thumbprint on them and a Thank You from our family, as well as a few phrases from our boys. Everyone seemed delighted to have them.

After the party, just a few of us sat out by the fire to wind down. It was a good night. It was the right thing to do after all. The warmness of our home (which has been in my family for over 100 years) was the perfect setting for the event. Hailee was with us, I imagine smiling.... the whole night.

The following day was a full day of awareness with Swim Above Water at the 2nd Annual Jack Ariola Erenberg Golf Tournament. We were able to speak with many families and raise awareness. We also gave away a Legacy Sponsorship to our upcoming event on Sept. 21st, Awareness Rocks! Our team is working so hard on pulling this event together, it is going to be a blast. For more information on the event and how to become a sponsor or buy tickets, visit click on the events tab.

Back to 2008~ Ironically, the timing of this writing is very close to where we were  5 years ago. The memories have been vivid. We were preparing to send the boys off to school and go back to work. I'm afraid that I will fail to adequately explain to you the absolute fear we felt in getting back into our routine. It was terrifying. We were going to be apart from one another for the first time since the tragic day. I can remember shaking with fear getting ready for work that first day back.

If knowing that we were going to be apart was not enough of a blow, I was also extremely nervous about greeting my co-workers, and even more so, my residents at work. I knew they were all very heartbroken. I knew they wanted to reach out to me and be near to me, but when I thought about it it made me feel short of breath. Could I just go into work, shut my door and vanish for the 4 hours I planned to be there? I suppose not.

The drive into work I could feel my heart race and my body tingle with anxiety. Each mile I drove away from home and toward work, I became more upset. I verbalized out loud in the car, asking Hailee to help me get through it. Asked her to take away the panicked feeling that I had. My hands were sweating and I felt nauseous.  All I wanted to do was turn around and go back home and never leave again.

Somehow, though.... I knew I had to do this. For, if I gave up or gave in.... our whole family might also. I felt a need to be strong. I wanted to be stronger than this tragedy. I wanted to win some part of this fight. So, I kept going.

I got to work and I was surprised how easy it actually was to walk through the door. What I had not realized at the time was that my wonderful and amazing boss, Mary Cordts had taken care of me. She had spoke with Staff before I came back and reminded them to give me some space. To let me get back in, slowly and at my own pace and allow me to take baby steps. My wonderful co-workers did just that. It was a perfect combination of what I needed. Space to breathe, but they were never more than a short call or walk across the hall if I needed them. And boy..... did I need them.

They were, of course, so very sad. Looking into their eyes I could see that they could not wrap their heads around what had happened. However, they did not pity me, or make me feel weak. Just the opposite. They made me feel loved, validated and able to talk. I cannot say enough to you about how much this group of people helped to save pieces of who I had been. I am forever grateful.

I could not even possibly tell you what, if any work that I got done that day. Pretty sure it consisted of going through some emails and cleaning off my desk. I couldn't wait to get home. My anxiety ebbed and flowed, but 4 hours was enough. I needed home and Chad and my boys.

I remember being so exhausted. I remember having to crank up the volume on the car radio and have the window open for air and noise. I was not listening to the radio at this point, because so many songs would send me into a tail spin. I remember thinking to myself so often.... "what happened? how could I possibly be this person?, how could I have a dead child?" My identity had changed and I had no control or choice in the matter. I think I knew then I was in for a struggle, just getting to know this new self I found myself looking at in the mirror. I would be forever changed, forever a mom who's daughter died. This was a haunting and terrifying thought. What to do first....... one foot in front of the other, baby steps. That is how I got started.

More to come,


Thursday, August 15, 2013

Part 15~ The Burial

Getting back on track with the blog. My heart has not been in it the past few weeks. I guess I am struggling with a few things. First, this is a horrible time of year. We are just days away from the annual marker, this year being the 5th year. Second, there are two other cases going on right now, Kali who has survived this amoeba, and Zachary from Florida, who is fighting hard, but is struggling. My heart does not know which way to leap, how to feel. I feel so helpless and hurt and terribly guilty for all of the feelings that I cannot seem to control. Third, I cannot sleep. My mind wanders all night and horrible dreams are what are in store for me, should I sleep. This has happened to me each year at this time, but this year they are especially haunting. It is a battle every day, just to be normal. Sometimes I want to run fast and far away from anything to do with this amoeba. I want to run from the awareness duties, run from the pain. I want to hide under my covers, away from all of it and forget about it all. But, I can't. I won't. I will, however takes healthy breaks from it when I need to, which is why this post has been slow to come. Thank you again for following and reading. It really means the world to us that people want to hear our story and that you are using it to help others. God Bless you all!!

Where I left off was Labor Day weekend. School started that Tuesday. I would honestly have to ask the boys if they went those few days, but I don't think they did. If they did go, it was not full days. We still had to get ready to do the burial that week for Hailee. We planned it for a Thursday or Friday... I don't remember which. We had decided on a cemetery plot not too far from us, and really close to where we now live. I mentioned in a previous post why we picked the spot.

As we got ready for burial which was primarily for close family and friends, which actually amounted to quite a crowd, I was so nervous. Unsteady on my feet. Felt like I could not breathe. We were all just spent from the past 10 days or so.

In between the funeral and the burial was actually quite busy. We had frequent company, even a friend from California drove in to be with us. We were getting cards and letters piled in our mailbox daily. It was almost overwhelming. No, it WAS overwhelming. We tried to keep up on reading messages being posted to the online obituary's. We tried to eat up the food. We had to wash some clothes. We tried to keep the house clean. It was hot out. It was sickening, humid and hot. I will never forget that. We tried to sleep, and anxiety attacks would take over. If it wasn't me it was Chad or one of the boys. It was hell on earth, to be perfectly honest.

We had to pull the money together and pay for the funeral. We had to start thank you cards (600 in all were sent out). We had to deal with life insurance companies, closing her account at the bank and withdrawing her tiny savings account. We had to begin to pay the medical bills already arriving in our mail box. A living nightmare.

The day of the burial, I guess you could say was a beautiful day. We arrived at the cemetery and many people were already there. I really didn't want to go, but I really did want to go. So confusing. Knowing we would not see Hailee again, felt awful. When we walked up to somber faces, we were escorted to chairs waiting for us. As we sat down, the urn and vault were in front of us. Everything looked very nice. Pastor Norm and Jeremy were there to do the service. Susan was there from Mattsons. Friends, family gathered around and there was a short service to commit Hailee to her final resting place. It was quite beautiful and oh so ugly.

After, a poem was shared that Susan had found. (I will have to get it and post it on here as it was beautiful). We then (Chad and the boys and I) did a balloon release in her memory. It was so sweet. Then, it was done. We hugged everyone as they cried to us, we.... almost too numb to shed a tear. I think we left and went to eat somewhere. All in in all it was short, and sweet and it was done with. Final.

I was in such a blur that day that I honestly cannot tell you that much about it, which is crazy but true. We went home and began to plan for the next week. Chad and I would go back to work. Yes, after only 2 weeks. We went back to work just 3 days after her burial. We went back 1/2 days for the first week, and then full time. The boys would go back to school.

We faced the task of cleaning her room, washing all of her laundry and bedding and putting everything away. We also..... turned off the TV. It had still been on the movie.... finally, we turned it off. We were taking steps forward. Somehow we just were.

More to come,


Saturday, August 10, 2013

Part 14~ Present Day

I wanted to blog tonight, not about the next part in our chronological story, but in refection of where we have been, emotionally in the past three weeks or so.

This is far and away, the most difficult time of the year for us. We are quickly approaching the 5 year angelversary of the death of our precious little girl. Each August has brought about a tidal wave of emotions, but this one seems to be a tsunami. 

As we prepare for the day coming up in just a few weeks, we are faced with the news of other children becoming ill with PAM. This too, we have been through in previous years. This year, a change in the story has caught us off guard and brought us to our knees..... in prayer and joy and pain.

We are having to really work together as a family to discuss the case of Kali Hardig. She is going to survive PAM. The first person in 50 years to survive. We are overjoyed! With that, though comes overwhelming sadness for our great and terrible loss. We wish so badly that Hailee could have been spared. We know that there is nothing that will change that outcome, but human nature dictates that we are bound to feel mixed emotions right now.

Kali has received an experimental medication called Miltefosine. It was originally created as a treatment for breast cancer, however had showed promise in the lab killing different types of parasites, including Naegleria Fowleri, the parasite responsible for the infection (Primary Amoebic Meningoencephalitis, PAM) that took Hailee's and many others lives.

Another approach taken by Kali's physicians was to cool her core body temperature down to 93 degrees. This approach is used in brain infections as a way to slow things down and help the body to heal. In the case of Naegleria, it also does not hurt as Naegleria is a heat-loving parasite and infects at warmer temperatures, so it would only make sense to lower the body temperature when the infection is acute.

Whatever the combination of efforts by theses physicians, and likely a little miracle.. Kali's physicians expects her to survive. They are uncertain at this point of how much actual damage was done and she will certainly have a long hospitalization and recover... but Praise the Lord, she will survive!

News came to us today of Zachary, who lives in Florida. He is 12 years old and his family reports that he has tested positive for NF. He is pediatric ICU at this time and in fact at this hour is in surgery in an attempt to reduce pressure on his brain. This brought back memories for us today, remembering the drilling that they did to relieve the pressure in Hailee's brain. In our case, the attempt was unsuccessful, as you read in an earlier post.

Zachary has been hospitalized since Wednesday. His doctors are in touch with the physicians that treated Kali, trying to replicate her recovery. Our thoughts and prayers are certainly with both of these families. Many of you have been praying for Kali, and we ask that you continue and include Zachary as well.

There is much work to be done to continue to make others aware of NF and PAM. It feels so uphill at times. We are doing our best to believe that the awareness we and our other dear friends that have lost a loved one to this, has made a difference in the treatment plan for the cases presenting this summer. We have to believe that, or else it all seems too overwhelming.

I will continue on with our blog and complete the story. I just felt I needed to pause tonight to talk about what is happening and ask for abundant prayers for these two children, currently in battle against PAM. I thank you all so very much for the love and support you have shown us, and for continuing to read our story. God Bless!


Monday, August 5, 2013

So, this my attempt to write something down as a parent who has lost a child.  Lost one of the most important things in my life.  Loss without a choice or a possible fix. I struggle with what to say and how to say it. I completely understand that there are parents/families who have had a similar loss but the cause of that loss was/is different than the we have experienced.  Although the tragic outcome is essentially the same, the road we have gone down is different.  So I feel it necessary to state that I am in no way trying to compare my loss with theirs or anyone else who has suffered loss of this magnitude.  We have friends who have suffered the loss of a parent or spouse and that loss, at this point in their life, is probably the greatest loss they have experienced so far.  It's just that though - their greatest loss. They can't imagine anything worse than what they felt, or are still feeling, when it occurred.  That being are some of my condensed and abbreviated thoughts from a fathers point of view after loosing his baby girl.

Guilt. Absolute guilt.  How do you live with something that eats away at your conscience. I can't recall how many times I told Hailee I would never let anything happen to her.  So many times as a little girl when something bad happened in her life, by a simple statement and hug, she felt safe.  My daddy will protect me.  My daddy said he won't let anything happen to me so I'm ok.  Part of the guilt I feel is - was she waiting for me to fix this.  Did she know enough to realize what was happening to her and just kept waiting for me to make this go away like I always promised?  My dad will keep me safe...why isn't he doing anything.  Unfortunately this was something I could not make go away.  All I could do was wait and hope that it would get better.  Did I fail her?  Did I not do enough, as a dad, to save her.  Very hard to live with that on your conscience.

Pure and absolute sadness.  What I won't get that I should have.  Hailee would have started firearms safety that fall and would have been out in the woods with my that year in her first deer hunting season.  Although I realize she probably wouldn't have actually shot at a deer, she would have loved sitting out in the woods with me.  Experiencing all the things that she had heard me talk about.  Wanting those experiences for herself.  To hear a sound off in the distance and getting excited that a deer might be coming - only to find out it was a squirrel not to far off.  To actually see her first deer while actually hunting and knowing she has the chance to take one down.  Knowing how I respect the aspect of deer hunting and have pride in taking a clean shot.  She would have loved it.  Teaching Hailee how to drive.  It might have been a stressful undertaking but it would have also been so worth it.  Watching her catch on to the little things.  Dealing with her first boyfriend, her first breakup, her first love.  Turning eighteen, graduating, going off to college.  And then there is the big ones.  One of my main duties in life would have been at her wedding - giving her away to the man she loved. Every time I think about it,  my heart feels like a crumpled up ball of aluminum foil.  There have been weddings since her death that we have attended and it's always hard.  The first wedding we attended after she was gone I thought I might have to get up and leave because I didn't want to make a scene.  It wasn't something I did on purpose for attention or whatever, I just couldn't control the emotional release as I watched the brides dad give her away.  It's tough.  And then of course there is Hailee become a mom of her own.  Watching her go through that joy.  Turning to her mom for guidance when she gets scared or doesn't know what to do. There are a lot of aspects between Hailee getting married and having her own kids that I won't go into but I think this is where a lot of the void in my life come from.
Anger.  Unrelenting anger.  I cannot convey to you the amount of anger that I carry on a daily basis.  For me it just won't go away.  It's difficult for me to grasp the simple fact that I could do nothing to save her.  It was as if I just dropped her off somewhere and left her on her own...alone.  What about all the people who don't deserve life?  Yes, I said it.  There are so many people who don't deserve life or the life they were given.  How can someone like Hailee not get that chance to live a full life while there are people rotting in prisons, never to get out, but yet live late in their years.  Murderers, rapists...basically a waste of a human being.  Hailee on the other hand truly loved that fact that she was simply alive, that she had life.  Being able to go over to her friends house brought her so much joy it was as if she won the lottery.  She loved to laugh, see other people laugh, see other people have fun.  How can someone so pure and honest end up losing their life before they actually start to live it?  Is it just bad luck?  Chance?  Was she supposed to die young?  Why didn't we get a say in the matter?  Shouldn't I have been given to the choice to change places with her?  Why is it I don't have my daughter anymore?  I believe in free will and I also believe we have choice.  When that is taken from you, when you don't have choice, it is there that the inner conflict starts.
Hailee changed my life when she was born.  I will forever cherish the man I became because of her.  Not to take anything from our boys as they have had their own individual affect on my life and hopefully they know that I love them just as much.  But Hailee was a girl, a daughter.  Changed the kind of person I was.  I couldn't be the same person as I was/am with our boys.  I'm no longer that man I was when she was here.  I can't be.  That person was for her.
I think deep down we still hope once in while that this still isn't real.  That what we think is reality is really just a dream and at some point we will wake up and see her beautiful, smiling face and watch her bounce and skip around.
I was given some simple yet direct advice just following the service I would like to share with you.  I was told to "Clear your conscience".  I wish I could Uncle Chuck, I really wish I could.

Hailee's Dad

Monday, July 29, 2013

Part 13~ One step at a tme

The irony of life is this.
It does not stop, even when it seems to have stopped.
Even though we had been through a living hell in the past 7 days, our tasks were far from over.

The afternoon of the funeral, back at our house, crammed into our tiny living room we got busy with the card box. Again, overwhelming. There were so many cards that it took us all afternoon to open them all up. And I mean HOURS. Quickly we realized that we needed a system. We wrote on the backs of the cards what had been enclosed and tried to cross reference if there had been a floral arrangement. We wrote down addresses off of checks if there was a check. We hoped that our guest book would help us with addresses, but we decided to write down what we could right away.

It is amazing how many different variations of cards there are for the death of a child. Don't get me wrong, there were many duplicates in the bunch, but an astonishingly amount of different cards for that purpose. How sad is that?!

Little did we realize sitting there that day with literally hundreds of cards and notes of well wishes, that we would have a mailbox full of cards and gifts for the next few weeks. Every day there was at least five, sometimes 10 or more cards in the mailbox from people we knew, or that our family or friends knew and even several from perfect strangers that had apparently read the obituary. There were monitory gifts, and tangible gifts. We received books on grief, candles, angels, and even a framed piece of art from our neighbors across the street with the programs from the funeral professional framed. And still... there was FOOD. My nemesis. I still could not choke down food and I even was falling behind on the water intake. I tried my best but just really had a hard time with that.

Our house was jammed packed with flowers, gifts and food. I didn't really care though. I just wanted all of it to go away and to be replaced by our sunshine Hailee. That didn't happen, as much as we prayed and hoped and begged. We were now left with the tasks at hand. Thank you cards, paying for the funeral. Obtaining our life insurance disbursements, closing her bank account, doing her laundry, cleaning her room, choosing a headstone...... eating, sleeping... breathing.

Mattson's again came through for us in a big way and designed and printed the most wonderful Thank You Cards for us. They had a beautiful photo of Hailee on the front and a nice saying inside. We used this photo for the Thank you's.

In between our "chores", we all felt an underlying fear, still not knowing what had happened to Hailee. Why had she gotten so sick, so fast. Would anyone else come down with this? Each and every ache or pain was a constant fear and worry to us. The thermometers were getting a whole lot of use. Keep in mind, with the lack of sleep, proper nutrition and stress,  I think a person naturally will get run down and even run a log-grade fever, which made us crazy.

As I said, Life... didn't stop. It was now Labor Day Weekend. Tuesday, the kids would start school, without Hailee. Hard to believe. The boys were prepared thanks to Leah getting what they needed, but we were all ill prepared for the act of going back to life. Chad and I would take the next week off as well and try to regroup. We had her burial coming up the next week, which would be a private service for close family and friends.

We had chosen a cemetery near and dear to our hearts. Hailee rests right next to her great-grandparents, great-great grandparents and great-aunts. Chad and I purchased plots at the same time we purchased Hailee's, so we would ensure we would be with her. The cemetery has much history for my side of the family. I have gone there so many times I could not even count, including almost every single Memorial Day, to pay tribute to our Veterans. This was a mandatory outing, that  I  have passed along to my children. Hailee had been in that cemetery 11 different times for the Memorial Day service, holding her ears closed tightly when they would do the gun salute. It was a familiar place to her. That gave us a shred of peace. Hard to believe we had yet one more service/ event to plan for. Susan at Mattson and Pastor Norm stepped up once again and planned for a wonderful graveside service, complete with a balloon release. I'll get to that a little later.......

That first weekend after the funeral was also my Dad's birthday and also landed me into the ER for dehydration. I hated to go there.... but was dizzy and exhausted and could not get any food down.

First,  will tell you about the hospital. We went to our local hospital, to the same ER where Hailee was. I was placed in a room very near the room she was in. I was terrified and felt horrible. Chad was there by my side. I was evaluated by the doctor who quickly determined that I was in fact, dehydrated. He calmed my fears as much as he could, and gave me some IV fluids. I started to feel better pretty quickly.

Now, I have mentioned Dr. Dave Moen in a previous post. While he was not my physician that day, he was in the hospital. When he had heard we were there, he came to our room. He came to the side of the bed where I was laying and Chad was sitting and he began weep with us, for us, for Hailee. . I will never forget it in my entire life. He told us how sorry he was, and that he truly had believed that she would be okay. He was shook up and so upset. The impact of her death was very difficult on him, we could see that immediately. His kindness and honesty that day is something we have taken with us these years. To see him, emotions exposed, somehow made us feel...... dare I say, better? We have told many people over the years of our experience with Dr. Moen, and I actually see him quite frequently as I work in the medical industry. I am greeted with and enormous hug each time, and a hint of a tear is usually present. I last saw Dr. Moen at a golf tournament my company was sponsoring. After the bear hug and slight tear, I told him about this blog and asked him if he would like to read it and he said he did. And... I believe he is. Thank you, Dr. Moen! <3 You impacted our process in such a positive way, both on the day you cared for Hailee and on that visit afterward.

 We all got together at our place for my Dad's birthday and spent some time together. We had a lot of company.  I had already bought his birthday card for the year, in fact Hailee had helped me pick it out. Friends and family sat on the deck, shared memories and began to try and find a tad bit of humor. I was torn between wanting them all there with me and wanting everyone to go away. I don't say that to hurt anyone's feelings, it is a reality that you go through. You are in a worm hole of sorts. Not sure where to go, what to do. Striving to find something that makes you feel better, only there is noting. The one thing that will make you feel better is the one thing you cannot have. Her. We could not find her anywhere, no matter how much we looked for both in reality and in our dreams,  she was just gone.

More to come,


Tuesday, July 23, 2013

Part 12~ The Funeral

Preparing for the post today, I have taken the time to listen twice to the audio recording of Hailee's funeral service. This is the first time in nearly 5 years that I have pulled this out to listen to it. Until now, I have come across it a few times, always just putting it back away, until I was "ready".

Not really sure what "ready" really is, we listened to it anyway. It was........ actually..... beautiful. It started out with music from our friend, Mark Kuefler that I didn't even realize was done, likely because it started before we entered the church. The first song on the recording is "One more day" by Diamond Rio.

Listening to it after these years have passed was ironically, helpful. The service truly was very beautiful and although I knew that at the time, I had forgotten just how amazing it was.

The first hymn, read after the opening prayer from Pastor Norm was "Jesus Loves Me".

  1. Jesus loves me! This I know,
    For the Bible tells me so;
    Little ones to Him belong;
    They are weak, but He is strong.
    • Refrain:
      Yes, Jesus loves me!
      Yes, Jesus loves me!
      Yes, Jesus loves me!
      The Bible tells me so.
  2. Jesus loves me! This I know,
    As He loved so long ago,
    Taking children on His knee,
    Saying, “Let them come to Me.”
  3. Jesus loves me still today,
    Walking with me on my way,
    Wanting as a friend to give
    Light and love to all who live.
  4. Jesus loves me! He who died
    Heaven’s gate to open wide;
    He will wash away my sin,
    Let His little child come in.
  5. Jesus loves me! He will stay
    Close beside me all the way;
    Thou hast bled and died for me,
    I will henceforth live for Thee.
We could not think of a more appropriate hymn to sing for such a beautiful and special young girl. First, through cracked voices and then through shaky notes, the congregation began to sing with all of their hearts. After the song, Pastor Norm came on again and talked to us. Told us how sorry he and everyone was that we had to be sitting there that day. Told us, and God, that we do not understand. Boy was he right. this made no sense. As I listened to him retell the story, I could go right back there again. He then announced that there would be a number of speakers. Our sister-in-law, Sami was to read Psalm 103:1, 2, 11-18; Matthew 11:28-30. 

Psaml 103 1, 2
Praise the Lord, my soul;
    all my inmost being, praise his holy name.
Praise the Lord, my soul,
    and forget not all his benefits—

For as high as the heavens are above the earth,
    so great is his love for those who fear him;
12 as far as the east is from the west,
    so far has he removed our transgressions from us.

13 As a father has compassion on his children,
    so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
    he remembers that we are dust.
15 The life of mortals is like grass,
    they flourish like a flower of the field;
16 the wind blows over it and it is gone,
    and its place remembers it no more.
17 But from everlasting to everlasting
    the Lord’s love is with those who fear him,
    and his righteousness with their children’s children—
18 with those who keep his covenant
    and remember to obey his precepts.

Matthew 11 28-30
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

This was read, however Chad's bother Mike read it in place of Sami. She had written something of her own and we wanted her to read it. It was wonderful. She captured who Hailee was very well and I think the congregation really appreciated her words. Hailee and Sami had become very close to one another and it was difficult for Sami to do this task. She looked amazing, dressed in her homeland clothing from Nepal. She was too short for the microphone, so that had to be adjusted. She did us all proud. 

Chad's sister Sarah read the scripture John 11: 17-35 

17 On his arrival, Jesus found that Lazarus had already been in the tomb for four days. 18 Now Bethany was less than two miles[b] from Jerusalem, 19 and many Jews had come to Martha and Mary to comfort them in the loss of their brother. 20 When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.
21 “Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. 22 But I know that even now God will give you whatever you ask.”
23 Jesus said to her, “Your brother will rise again.”
24 Martha answered, “I know he will rise again in the resurrection at the last day.”
25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”
27 “Yes, Lord,” she replied, “I believe that you are the Messiah, the Son of God, who is to come into the world.”
28 After she had said this, she went back and called her sister Mary aside. “The Teacher is here,” she said, “and is asking for you.” 29 When Mary heard this, she got up quickly and went to him. 30 Now Jesus had not yet entered the village, but was still at the place where Martha had met him. 31 When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.
32 When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.”
33 When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34 “Where have you laid him?” he asked.
“Come and see, Lord,” they replied.
35 Jesus wept.
That last verse. "Jesus Wept". I believe he indeed did weep when precious Hailee died. We believe he cried for her, for us and for her Heavenly family. This is part of the reason (along with the conversation from the car when Hailee told me that Jesus was there and that she was okay) made me not be angry with God. I believe he wept, right along side of us. I do not believe she was "chosen" or that God needed another Angel. I believe she was his daughter too, and HE WEPT. 
Next in the line-up was Pastor Jeremy. He read Hailee's obituary (noted in a previous post) and a letter from Hailee's brother, Justin. Justin's letter read: 
"I know being a big brother means you pick on your little sister. There are fights, or giggles. Either one means that I loved her so much that I would fight an entire army for her. She knows that we loved her. I wish I could say more, but there are no words to express the love I had for her. None to express how important she was to me. And Hailee, I know you can hear me. I love you so much that I can't bear to say it. I love you and always will. I want to thank you all for coming and I know you all loved with all your hearts. 
Hailee's big brother, Justin. 
Next up was my older sister, Heather. She read a note that we had prepared in advance and I think added some words of her own. She did a marvelous job. How pressured all of these speakers must have felt, how scary. I would not have wanted to be in their shoes for anything. But, even more than me not wanting to be in their shoes, I absolutely never ever wanted them to be in mine. 
After Heather spoke, a song selected by Chad was played. It was called "Youth" by Collective Soul. 

Such a fitting song.... love it to this day. 

After a short prayer, Mark Kuefler played two more songs. One I remember so well, called "Hey God" 
One part of the song, Mark had changed the lyrics a bit and sung "Hey God, tell Sweet Hailee, Welcome Home". 
I had completely forgotten about that too! So heart warming to listen to it back. 

Next was the meditation from Pastor Norm, where he lovingly spoke of our Kitchen Friends and compared our friends and family to the scripture reading from John 11, where Mary and Martha's kitchen friends helped them in their time of need, when Lazarus died. It was very touching and made a difference to us and our thought process. 

Next was another hymn, chosen by my sister Heather, called "Here I am, Lord". 

I, the Lord of sea and sky
I have heard my people cry
All who dwell in dark and sin
My hand will save.

I who made the stars and night
I will make the darkness bright
Who will bear my light to them
Whom shall I send?

Here I am Lord
Is it I Lord?
I have heard you calling in the night
I will go Lord
If you lead me
I will hold your people in my heart.

I the Lord of snow and rain
I have borne my people's pain
I have wept for love of them
They turn away.

I will break their hearts of stone
Fill their hearts with love alone
I will speak my word to them
Whom shall I send?

Here I am Lord
Is it I Lord?
I have heard you calling in the night
I will go Lord
If you lead me
I will hold your people in my heart.

The next song was my choice. I had selected "Come to Jesus" by Mindy Smith. I cry to this day when I hear it. I used to sing it to the kids before Hailee died, always wanting them to know that Jesus had their back.
 A final benediction was said, and that was it. We were ushered out of the church and outside where Hailee's body was brought out by the pal bearers and placed in the funeral hearse. A short service was completed at the hearse. then, the car drove off, heading to the crematory for Hailee's body to undergo the cremation process that we had decided on. It was HELL on earth. Away she went from us, one last time.

I remember the heat of the day beating off the pavement and up to us. I remember literally hundreds of people weeping. There were 600 people at the funeral that day. It was too much. My mind focused on Chad and the boys and I needed them within a foot of me at all times. I think maybe they felt the same way.

We meandered back through the flood of people, back into the church to the room where the luncheon was being held.

I wish to this day that I had a photo of that room. It was unbelievable. Our Kitchen Friends had done such an amazing job at preparing the meal and decorating for the luncheon. This funeral did not have the normal hot dishes, cold sandwiches and salads that is normal funeral food. It was a full chicken dinner. There was a fountain of punch on a table. There were fresh flowers on every table and personalized place mats with Hailee's photos on them. I want to say there might have balloons or streamers too, but can't be sure. Everything was very pretty, and very pink. She would have loved it.

I tried to eat. I really, really did. It had been nearly a week and my intake was way down. Everything just kept getting stuck in my throat when I tried to eat. I looked at my plate at Hailee's favorite meal and decided I would eat the chicken. Determined to eat her favorite food, I was able to get some down. People came by and hugged us and spoke with us and said goodbye. We answered them and hugged them back. It was all we could do. This is the very lowest and saddest I had ever felt in my life. The ants on the ground could look down on me at this point. I wanted to go home.

Before we could leave the church, we had to manage the beautiful floral arrangements that were all still sitting in the main part of the church. There were 53 of them (we counted). What in the world could we do with 53 floral arrangements? We dug in and began to sort. We would have some brought to Parmly (the nursing home where I worked) and some brought to Hailee's school. Close family and friends would take home some and we brought home as many as we could. Susan and Paul at Mattsons had taken the time to photograph each and every arrangement and had them put in the back of our guest book, labeled with who gave them so we have a permanent record of those generous gifts. They thought of EVERYTHING!

We loaded up and headed for home, a few miles down the road. Staff from Mattsons hauled things home with and for us including all the photos and items we had brought and the flowers we were taking home. Even the box of cards was huge and had to be hauled.

Then.... we were home. Family around us. Staring at each other. Now what? NOW WHAT????

All for now,



Monday, July 15, 2013

Part 11~ The Visitation

About 96 hours had passed and we were dressing and getting ready to see Hailee one last time. I put on the new blouse and my old dress pants and tried to do my hair and attempted make up for the first time in days. I looked over my boys to be sure they looked sharp, made whatever adjustments needed to be made and off we went.

The day had been spent getting last minute things ready to go and all of a sudden, we were in the car and on our way. I struggle to describe to you what my heart was doing at this point. It was somewhere between longing to see her and sheer and utter panic at the thought of seeing her. How would this go??? I think we were all feeling the same way.

I do not recall the ride to the funeral home, or really even getting there. I am not sure what was said we we got in the door, but I would imagine it surrounded bringing things in and getting things organized.

It was time.....
We were going in and we were going to see her. It was surreal. Probably the strangest feeling of my existence.

I remember first glancing in the direction of the casket at the end of the visitation room. Then, I knew I needed to put my right foot in front of my left and make some forward progress. The simultaneous urge to run away and also run toward at the same time was unnerving, at best.

Somehow, as a solid family unit, we moved forward. Toward her. Toward reality. Toward pain. We moved like a school of sunfish toward her, in that beautiful wooden box, surrounded by what looked like the Garden of Eden in flowers surrounding her. 

When we arrived at her side it was unbelievable. She was the most BEAUTIFUL, obviously departed, Angel we had ever seen. We were able to immediately see past the paleness of her skin, the lifelessness of her body laying in front of us to see the most stunning thing we had seen, since we held her when she was born. All four of us, Chad, the boys and I had held her since she was a tiny baby. And, we looked at her now, so removed yet so close to us. It was .... unexplainable.

In the next moments, we were joined by our dear immediate family and closest friends who also viewed the beautiful angel in front of us. Sobs... sighs.... Pain.... was evident. Everyone agreed, she was stunning. We quickly made the decision to go ahead and leave the casket open for the remainder of the visitation. It became utterly clear that so many others, especially the group of 11 year old's coming tonight would need to see this amazingly beautiful sight in order to find some sort of reality or closure to what had happened. It was a unanimous decision.

So.... we waited for people to arrive, which seemed to be only a few moments of time, although it was more like an hour that we were there together, viewing her privately before others came. And.... oh my gosh... people came. In droves.

Before we knew it, the funeral home was filled. It is a little bit of a blur... but there were so. many. people.

Susan Hutchison and her husband Paul were AMAZING. There are the funeral directors at Mattson Funeral Home. They had taken care of everything. Every single thing you can think of..... Done. As the visitors arrived, Susan had put out chairs in the center of the viewing room for Chad and I to sit on. Not only did they know that we could not possibly stand for those hours, but the also recognized that the chairs should be raised stools, because that way we would not be at a lower level than our guests. This way, we were eye to eye with them, yet we did not have to stand. At one point, Susan excused us from out duty for a mandatory break in the back room to have a bite to eat and a rest. She knew exactly what to do. We are so grateful for her, to this day!  Our boys, stood right behind us though, for most of the event, never leaving our sides. Forever, having our backs. 

There were so many people that came out to honor our girl. Later, Susan told us that the number was around 500 guests. The line was out the door, down the sidewalk/ block, waiting to see our baby, and us. There are so many things I do not remember. I am not really sure what any one person said, but I do have a general sense of what it was like.

There was person after person that had walked by all of the photos and memorabilia laid out for Hailee and then past the casket where she laid, on to us. We found ourselves actually consoling others. I know this sounds odd and I do not say it our of disrespect at all... but it was the role that we took on for those three hours. People were out of sorts. They did not know what to say. Most cried. Some averted eye contact. Everyone seemed to be quivering, hands shaking, voices cracking.

I think we smelled every single kind of cologne and perfume. Realized who smoked and who didn't and quite honestly who had a nip or two off the bottle before coming. Our senses were on high alert. I do not say these things to offend anyone, so please understand that. I only am trying to be as real and raw as I can to help you understand what it was like.

People told us how sorry they were. How they could not believe what had happened. People passed by us without any words at all, only a look of terror on their faces. We later learned that our "kitchen friends" watching from the sidelines, had a very hard time. In fact, our friend Leah at one point was having an anxiety attack watching all of the people come by us. She had announced to another friend... "That's enough. They have had enough.... everyone has to leave right now!". Of course, that was not realistic and we stuck it out and I hope, greeted almost everyone.

After what seemed like a full day, it was done. Time to pack up and head home. Time to leave our girl, once again. I am telling you now, it was AWFUL. There is noting in the world like this. Although it was a relief to see her peaceful and beautiful... every part of my being wanted Chad to pick up her lifeless body, put her in the car, take her home and put her in her bed. That is the honest truth.

Instead of being admitted to a mental institution, we appropriately left the building, got in our car and drove home as a family of four. That was the last time we would see her beautiful face. Appreciate the curves of her face, the shade of her hair the shape of her hands. Her pink fingernails, her perfect eyebrows. The last time we would look at her full lips and long eyelashes. Her "piano player" fingers, her tanned skin. Her un-pierced ears and her long arms. It is our last view of our girl. We cherish and despise that moment, all at the same time. It felt so final, yet we knew there was much, much more to come.....


Thursday, July 11, 2013

Part 10~ Finalizing Plans and Panic Situation

After our visit with Grandma, we had to meet at the church with Pastors Norm and Jeremy to finalize our selections for Hailee's funeral service. We had put a lot of thought into what we wanted for music. We trusted Norm and Jeremy's insight on the message that would be given.

We had selected the music that we would want and also had selected readers for the Scripture readings. We selected the pallbearers and honorary pallbearers. We selected who would give the Eulogy.

We just kept going through the motions of this disaster... somehow. We made decisions when we had to and moved along in the numbness the rest of the time. We were doing our very best to stay focused and calm, but there were so many things wrong with the situation. For the life of us, we could not figure out how just short of 48 hours ago, Hailee had died.

I have often explained to people the feelings during that time. If you are reading this and you have children then you will know what I mean by this explanation. Have you ever had your young child in Target, or Walmart with you. You know, when they begin to exude their independence and are now big enough to walk in the store vs. ride in the cart? I am sure most can to relate to the feelings when that child goes out of your sight, around the corner, under a clothes rack... that fear, panic and sickness in your stomach until you can find the child? That is what it was like. We were afraid, panicked and anxious, yet we could not find Hailee no matter how hard we looked. She wasn't around the aisle in the store, she was not back in the toy aisle. She didn't pop out from under a clothes rack. We were just left with the constant feeling of panic and fear and longing.

We finalized our plans at the Church and had an assignment to pick up CD's for two of the songs we had chosen for the service as there were more contemporary and they would be played over the stereo system. We also still had to finish selecting photos for the video, put photos in frames to have sitting out at the services, and ... oh my gosh... Chad and I both needed clothes. Furthermore, we had to select what Hailee would wear as her final outfit. Didn't see that one coming until Susan at Mattson's gently reminded us. We would have to go shopping. On top of that, the boys needed haircuts. Sigh. We would have to do that on Tuesday. We decided we had done enough for Monday.

I'm not quite sure I remember what we did after the church... my mind goes back in a blur, but I would guess we went back to the house, had company and worked on our assignments. We were also checking online and seeing the messages of sympathy pouring in on the Mattsons web-site as well as the newspapers as now the obituary was out there. Food??? I guess you could say there was food. There was so much we couldn't even eat it all. None of us were very hungry, but we picked away at it. And... it was ever so hot outside. And sunny. How dare it be nice!!

The next day, Tuesday, started with a trip to the chiropractor for both Chad and I. We could barely move after another night of restless sleep, and sleeping while sitting up for me. We visited Dave Galleberg, our long-time friend and chiropractor in Wyoming. He and his wife Melanie were so kind when they saw us walk in. We didn't even call for an appointment. After 20 minutes or so, feeling a little better, physically anyway we said goodbye to Dave and Mel and headed out to "do the shopping". Thankfully, the boys had their suits ready to go from Leah taking them shopping. So we just had Chad and I and Hailee to shop for. This would be a trip.

We went to Kohls. I was able to find a skirt and blouse and vest for the funeral and another blouse that I could pair with some black dress pants that I already had. Chad picked up slacks and a dress shirt, but we could not find a jacket at Kohls that we liked, so we ended up going to the mall for that. Before leaving Kohls, we had to head to the girls department. We agreed if we were all getting new clothes, so was Hailee.

Just when we were about to walk over to the girls department, my phone rang. It was Susan from the funeral home. We had been in regular touch with her and she knew we would be heading out shopping that day. She called and as kindly as she could, let me know that we were not limited or restricted on the type of dress or blouse that we would choose for Hailee. Susan had inspected her body where the IV's had been in both arms and her neck and assured me that it would not look bad. We could get short sleeve, long sleeve... whatever we wanted. It had come to this. I was so grateful for that phone call. I think about it now and still think how crazy that sounds. I was GRATEFUL to know that my daughter's lifeless body would support whatever outfit we choose because she was not too bruised from all that had been done to her. What????

We ended up selecting a pretty pink, slightly v-necked blouse that was sort of a satin material and black pants. Well not pants really... my mind is blanking right now, but there are shorter pants, but not capris. Kind of look like a skirt, but they are shorts/ pants.... oh well. Maybe it will come to me later what they are called. Hailee had wanted a pair for school. I believe we might have gotten a necklace for her too, but can't remember. I would pack up the outfit, plus underclothes to be taken to the funeral home so Susan could dress her. Arg......

Next we went and found the jacket for Chad, went to Best Buy to find the CD we needed and stopped to get the boys' haircuts. The 15 minutes they were in the chair while I waited in the waiting room was almost too much to bear.

My mind wandered to places is didn't need to be. Thinking about all of it. Reliving it. Wondering.... what had caused this violent illness? My anxieties rose. I wanted to be home, and soon. We left the Fantastic Sams we were at, somewhere in Blaine, I think... and headed for home. About 1/4 of the way back on our 30-40 minute drive, my cell phone rang. It was my Mom. She said they were on their way to our place and were wondering if we were home. I told her we were on our way. I could tell something was off in her voice. Then, she said something I will never forget. She said, "Heidi, we were just at the clinic for Dad's routine bloodwork and Leah came in with Chelsey" (about 4 yrs old at the time and the baby of the 4 girls). Mom said "Chelsey is sick, burning up with fever. Leah was frantic. They are sending her to Children's."

I almost vomited. From the depths of my core, I started to shake. I started to cry. I sobbed out to Chad and the boys what was happening. We were all just sick. I told Mom we would be home in about 20 minutes and she said they would meet us there. They knew we couldn't be alone. I hung up and called Leah. She and her Mom were driving Chelsey to Childrens. I formulated some sort of calmness for Leah's sake because she was freaking out, and driving. Chelsey's temp had spiked to about 104. She had been just fine all day. They were in the floral shop getting flowers for the funeral and Chelsey looked flushed and said she didn't feel good. Leah felt of her head and put her in the car and brought her to the clinic. From there, the Dr.'s said the best bet would be to go to Children's because Chelsey and Hailee saw each other frequently and we still did not have test results back. I asked Leah if Chelsey had been throwing up and she said no. Right after she answered that question, in her back seat, Chelsey threw up. Leah cried, "she is throwing up now". My heart was beating out of my chest I am sure of it. My mouth and throat went dry, my hands became clammy and wet, my head raced. I felt dizzy. I was nauseated. I was in a full blown panic attack.

I told Leah to call me as soon as she got to Children's. I told her I didn't think we could muster up the strength to go back there, but depending on what the Doctors said, we would if we had to. I hung up with her. The mood in our car very somber yet very electric with anxiety. I could barely stand it to sit in the passenger's seat and ride. I was taking deep breaths and was fidgeting. Chad could tell I was climbing out of my skin. He encouraged me to take one of the anxiety pills (ativan) that had been prescribed to me that I had so far refused to take. I took them out of my purse, split one in half (which is a major accomplishment if you have ever seen the size of an ativan) and took it. By the time we got home, I was still very shaken and upset but was able to at least function and breath a little. I called the clinic and they put me right through to our doctor. I was still so upset and he tried to reassure me. He also said he was calling the lab to try and get copies of Hailee's test results to see what her infection had been caused from. I had no idea at that point that there would be NO ANSWER to that question. He called me back not too long after and told me that every single test they had done on Hailee's blood and spinal fluid came back negative. He listed them all to me.... lymes disease, west nile, equine encephalitis..... there were many more. All negative. So... what was it? All he said was, "Heidi, I don't know". He promised to keep trying to find out more information.

The wait was difficult, but Leah made sure she kept us up to date. They checked over Chelsey and contemplated doing a spinal tap but did not feel that it warranted that just due to the fever and vomiting alone. They ran some tests and sent her home. Now, I know what you are thinking because it was exactly what I was thinking. That is what the did with Hailee too! However, Chelsey was not as sick as Hailee and felt a lot better even by the time they had arrived at Children's. To this day, I believe it was a grief reaction that she was having. Everyone around her that she trusted and knew was in a state of full on grief and she didn't know what to do with that. For days, all that was around her was the death, the planning of the services and missing her friend. Her little body revolted. She was absolutely fine by that evening. I, on the other hand had just moved into my hypochondriac stage. Chad and I went to the store and bought new thermometers, and for the next few weeks checked the boys' temperatures more than I would care to admit. We even checked ours a few times!

Finally able to settle down after Leah came by on her way home from the hospital so we could see Chelsey with our own eyes and hug her and kiss her, we waited out the evening, finishing our tasks and going to bed. The next day would be the visitation. I remember thinking, "tomorrow, I will see my baby for the last time". Trying to imagine what that would be like, and I couldn't... I went into a fitful, sitting up, sleep.

All for now,


Monday, July 8, 2013

Part 9~ Our 2nd Lonely Sleep

Night two came about, as if it didn't realize that our world had stopped. Darkness fell as anxiety rose, likes ships passing in the night. The looming hours ahead were overwhelming and made me feel clausterphobic. We were all, of course, completely exhausted from our many phone calls, visitors and hideous decisions we kept being called to make to plan for the funeral of our baby girl.

Restless, we tried to sleep. Hailee's TV still on, playing the intro menu of "Meet the Parents" over and over again from behind her door. We still could not turn it off. I am pretty sure the boys remained on the couch and love seat for nights to come. They had on the living room TV, us our bedroom TV.

I can recall beginning to doze off and then being startled awake again by the visions of what had transpired. We both tossed, and turned. Laying flat was nearly impossible as I felt hungry for air, so I had to try and fall asleep sitting up. The panic attacks and anxiety were the worst I have ever felt in my life. I was scared out of my mind that something would happen to the boys. After all.... the realization had begun set in that we didn't even REALLY know what had caused her death. Was it contagious? Would the boys get it or Chad or I? How about all the visitors at the hospital. My mind played tricks on me, logically reminding me that most of the Doctors and Nurses that provided her care did not wear masks, but then the illogical side of my brain had me convinced I would lose another child. It felt so out of control and the most frightening thing I have ever experienced.

Finally falling asleep, I believe we again did sleep through the night and the light of day brought a similar scene as the morning before with sobs and disbelief, she was still gone.

One memory that remains from this 2nd morning was the fact that our cat was standing about an inch from my face and when I opened my eyes, she started rubbing her face against mine. This was completely unusual for her to do this. She carried on with this for the longest time. She also met Chad with the same response. We said right away that somehow, someway the kitty knew Hailee was gone and how sad we were. She was trying to help us. Kitty did that for days.... weeks I think, after.

This was the day that we visited my Grandma Carolyn at her Assisted Living apartment, which is also where I worked. It was extremely painful to go there because I knew I would see co-workers and it would be heartbreaking. We arrived at her apartment and managed to go in a side door without seeing too many of my staff or co-workers. We knocked on her door and went in. The minute she saw us, she burst into tears. She said something on the lines of  "Oh my dears.... come here, come here". Tears streaming down her beautifully aged face, a look of certain understanding in her eyes, she held us both tight while we sobbed into her tiny frame.

Grandma had lost her first child, Judith Lee Proulx, to what was likely meningitis when Judy was about 14 months old. I heard the story many, many times in my life and knew very well that it had impacted my grandparents for the rest of their lives. The ENTIRE rest of their lives. One of the first things Grandma told us is that this is a Life Sentence. You never ever get released from this pain. She explained that in time... it will be less gripping. It would seem further away but it would never, ever be more than a breath away from you at all times. She had such sage advice. We soaked it in like sponges, ironically as we really were not taking in very much. She cautioned that the slightest thing would trigger the pain, and there would be no warning. It would be like a tornado, suddenly upon us with no regard for what we were doing in our day, or who was in it's path. She was right on all of her accounts.

Grandma told us, almost as if she knew she had limited time to teach us these lessons, that we needed to keep talking about what had happened. She urged us not to shut down and to keep our individual doors open for others to enter and help us. She told us we needed to do this for as long as we could, for she knew all to well that people do not stay with you for long through grief. She told us that people will be ready for us to be "over it" or "better", far before we were even ready to try to take a normal breath.

She told us that the hardest part now would be when people would go home. Go on with their lives, their children, their legacy. She said that people who we thought we were very close to might grow more distant and that there would be shining stars for us that we didn't expect.

She told us many things that visit. After the first bout of tears and sobs, Grandma very matter-of-fact told us what we needed to hear, not what we wanted to hear. She did not tell us that "God needed another angel" or that "she is in a better place". Grandma knew we didn't want an angel in Heaven, we wanted an Angel in our arms!!! In the next days and weeks, the things that grandma didn't say that day will become a future blog post to help others know what and what not to say to a grieving parent.

We left Grandma's feeling... so strange. It felt like she shored up some stray thoughts for us and filled our tool belt, preparing us for the hard work ahead.

Grandma privately struggled greatly with what had happened. The nursing staff at the Assisted Living noticed her mood and anxiety increasing negatively. She didn't sleep well, or eat too well after Hailee died. Her health continued to decline in the months after Hailee's death and she died six months later from complications to her lung/ heart disease.

Her passing was so bittersweet. I knew she longed to be with my Grandpa and her beautiful Judy and her daughter Candice (who died in 2005), yet I needed her here too. I needed her guidance, to help me get through this. She knew what I meant. And, too soon.... she had to go to Heaven. She talked about Hailee a lot in her final days, when the line between this world and the next becomes blurry. She talked of her and to her. She told Chad and I that Hailee had been to see her and that she had a "lavender ribbon in her hair". She promised me she would look after Hailee when she got to Heaven. I was, admittidly, horribly jealous that she was going to Hailee, yet I knew that I wanted to live on with Chad and my boys. Such a strange, strange feeling.

Grandma's visitation was on my birthday that year. My family brought a cake to the funeral home (you would have to know Grandma Proulx to know how fitting this was as she LOVED cake) and they sang me Happy Birthday. I felt like I could almost hear grandma singing along, harmonizing as she laid in her casket, in the same funeral home, the same location, with Hailee's quilt draping over her legs. The same quilt that had draped over Hailee, just six months prior.

Grandma and Hailee and Doctor Seuss 

All for now,


Monday, July 1, 2013

Part 8: The Planning

We made the bulk of all decisions that first visit at the funeral home. We looked at caskets and picked out the one we thought reflected her beautiful spirit the most. We had ornamental musical notes for the corners of the casket that would eventually become keep sakes, We selected flowers, began to talk about options for the service, days, times. We made a decision to have an open casket for immediate family only, prior to the visitation. We looked at messages for the program. We discussed pulling together photos for a slide show. We were encouraged to bring anything and everything we wanted to have on display for the visitation. We selected Thank you cards. We looked at options for memorial jewelery. We decided on a vault for her cremated remains.We helped Susan (our funeral director) with the information she would need to write the most beautiful obituary. 

LaMeyer, Hailee Marie Age 11 of Stacy Student of Linwood Elementary Died unexpectedly from an illness on Saturday, August 23, 2008. 
 Hailee Marie LaMeyer was born September 23, 1996 in Forest Lake, Minnesota the third child and only daughter of Chad and Heidi (Proulx) LaMeyer. Hailee was the beautiful little girl that Chad and Heidi had always dreamed of. Hailee was always full of energy and full of life. She completed the fifth grade at Linwood Elementary and was looking forward to joining her classmates in their final year at the school, before moving on to junior high school.

Hailee will be dearly missed by those who were touched by her life including her devoted parents, Chad and Heidi; brothers, Marcus and Justin; grandparents, Lee and Shelia Proulx, Bruce and Sue LaMeyer, Bonnie Reeves and Paul Pfromer; great grandparents, Carolyn Proulx, Margaret Rogers, Virginia Houg; aunts and uncles, Heather (Mike) Abrahamson, Leah (Brian) Funkhouser, Mike (Sami) LaMeyer, Matt LaMeyer, Sarah LaMeyer; cousins, Miranda, Brandon, Zachary, Maggie; many other family and special friends.

A celebration of her life will be held at 11:00 a.m., Thursday, August 28, 2008 at Linwood Covenant Church, 6565 Viking Blvd., Linwood. Visitation will be 5:00-8:00 p.m., Wednesday at Mattson Funeral Home, 343 North Shore Drive, Forest Lake and one hour prior to the service at the church.
The following photo was used for her obituary....

 Our assignments included meeting with the Pastor from our Church and discussing the service. Pulling together photos for the video and to display her favorite items and try and get some rest for the impossible week ahead. 
We headed back home again after leaving the funeral home and had an appointment to meet with the Pastor later that afternoon. 
Another thing on our immediate list was to visit m Grandma Carolyn. She was living at the Assisted Living at the Senior Housing Complex I managed at the time and Grandma had also lost her 1st child, Judy to what was believed to be meningitis. I will have a later post with Grandma's visit and the most valuable pieces of information we could have received in this tragedy.
When we returned home, the house was was sparkling. Even the landscaping rock project we were in the middle of had been completed. Our friends pulled through, once again. 
Our friend Leah, also offered to take the boys shopping for school clothes and supplies. Were were supposed to do that over the weekend as school was starting the next week. We were WAY late in getting this done, and as it turns out, that was probably for the best. I would have been crushed to have to deal will all of her new school things. We also were supposed to have arranged for her obtian some equipment to play the drums in school and ironically we had not gotten to that either. The Lord works in mysterious ways. Anyhow.... Leah left with the boys. She also planned to get them clothes for the services. Meanwhile, we were preparing to meet with Pastor Norm and Youth Pastor, Jeremy Elseth from our church. We had taken a few moments to actually go into Hailee's bedroom and looked around a bit. One of the things that we found was a single page that had the lyrics of a song she had composed. It stopped us in our tracks. We could not believe the words we read on this page. They are as follows: 

Love is hard to find 


"Finding you is hard but I know I can do it because I can belive it! Yeah

I know your there and I've known you've been there explaining words that only make sense when you say them. They sound so clear! 

I hopeing this can end, I gotta find you so it can! 
Cause then you know we can be together, Just you and me! Yeah

When your there you dissapeer and when your gone you're there! Sometimes I am so confused that I don't know what to do! Because love is hard to find". 

Hailee LaMeyer

(note... all misspellings and grammar errors were her's and forever a part of this song).

Whew! This was unreal. It seemed like some kind of premonition to us. It seemed so fitting and we just could not believe what we were reading. My mind went back to the car conversatin about God and Jesus. I was grateful and so very angry all at the same time! 

When Pastor's Norm and Jeremy arrived, this is one of the things that we showed them. The too, were in awe of what they were reading. They immediately suggested it become a part fo the services, and so it was. It was the cover of the program at her funeral. 

To this day, this song is framed and hangs in the entry of our home as a reminder of the precious gift se was to us, what she gave us and how much she meant to everyone she knew. Here is a photo of the original composition: 

 We also spent some time talking with Norm and Jeremy about Hailee as a person, giving them many details about her and her life. We told them about our loved ones, including the friends that had stood by us and continued to help us again and again. Our words about our friends reminded Pastor Norm of a bible story that would serve as a part of the groundwork for Hailee's funeral service. The story comes from John 11 and is about the death of Lazarus and how Martha and Mary were so very fortunate to have people around to help them. The verse that stood out to Norm was 17-19 and read: 

"On his arrival, Jesus found that Lazarus had already been in the tomb for four days. Now Behtany was less than two miles from Jerusalem, and many Jews had come to Martha and Mary to comfort them in the loss of their brother." 

Pastor Norm referred to our friends as "Kitchen Friends". He said those are the type of friendships that are so similar to family it is hard to tell them apart. These friends come into your home, usually without knocking, go into your kitchen, open the fridge and help themselves to a diet coke-- no need to ask. These are the people in our life who do not need to ask permission and need not make apologies. His words stood out to us then and still do to this day. Our "Kitchen Friends" are simply..... amazing. 

We spoke of the funeral service and immediately knew that we wanted it to be primarily music, a little scripture, and words about Hailee and who she was and what was important to her. We did not want a lot of text read, mainly expressing our faith through music. So we began to plan. We had a few more assignments. We needed to select music that we wanted and think about what we would want said. The boys and we were encouraged to write notes if we chose to be read aloud. We had a plan to follow up at the church in the next day or so to finalize the selections. Jeremy, missing Marcus and Justin on that first visit because they were shopping with Leah, promised to pick up the boys and spend some time with them. Both of the boys completed confirmation with Jeremy as their youth Pastor. Hailee would have begun confirmation classes that year. 

Every single way we looked, people were blessings to us, helping us, warming our frozen hearts. Yet, with all of that love and warmth around us, the stone cold reality was still there. She died. 24 hours ago, she had died. How could we possible go on? 

More to come, 


In loving Memory of These Beautiful Souls

Annie Bahneman~ Age 7~ Minnesota
Blake Driggers~ Age 8~ South Carolina
Christian Strickland~ Age 9~ Virginia
Courtney Nash~ Age 16~ Florida
Dalton Counts~ Age 9~Oklahoma
Elizabeth Simms Hollingsworth~ Age 10~ So. Carolina
Hailee Marie LaMeyer ~ Age 11~ Minnesota
Jack Ariola Erenberg~ Age 9~ Minnesota
Jeff Rosenthal~ Age 19~ Florida
John "Jack" Herrera~ Age 12~ Texas
Marissa Claire Cook-Norris~ Age 7~ South Carolina
Mark Kincade~ Age 27~ Texas
Mason Faubel~ Age 6~ Minnesota
Phillip Gompf~ Age 9~ Florida
Waylon Able~ Age 30~ Indiana
Will Matthews~ Age 14~ Louisiana
William Steven Sellars~ Age 11~ Florida
Zachary Reyna~ Age 12~ Florida