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 www.swimabovewater.org 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,

Heidi

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,

Heidi 

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!

Heidi

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 said...here 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