Tuesday, September 24, 2013

The Aftermath, Part 4: Crazy Little Thing Called Grief.

I mentioned in my last post that grieving is a process and that is exactly what I've learned and am still learning as I go through my grief over the loss of Donnie. When I lost my mom, I grieved for her. When I lost my brother Gerald, I grieved for him. But they were both entirely different than what I've experienced in grieving for Donnie. 

With my mother, I miss many things about her and I've expressed some of that in past blogs. I still miss her often and think of her daily, but in the wake of grieving Donnie, my grief for her has surprisingly become somewhat renewed and at times more intense than what I went through when I initially grieved for her. I think partly because of 2 reasons. 
  1. I think Donnie was kind of a buffer for me. I grieved for my mom and it was difficult, but I had him here to comfort me and hold me and help absorb a portion of my grief and bear part of my burden.
  2. Without Donnie here, I naturally long for my mother's comfort in my grief. When I ache for Donnie, I ache for my mom to comfort me, talk with and run to when I have difficult days. So in a way, without Donnie here it's almost as if my grieving for my mom has begun anew. 
I was watching a marathon of Tabatha's Salon Takeovers a few months ago and wailed and cried over my mom through two or three episodes. It reminded me so much of my mother and my involvement in her world when she did hair and worked as manager at Regis Hairstylists in the Mall back home. I realized how special those memories were and how much I took her for granted. 

With my brother, I grieved losing him, but even more so, I grieved for the loss that Amy, Alana and Ian had to endure. I knew I couldn't comprehend it and yet, dealing with Donnie's illnesses over the years and facing uncertainty more than once over his life and health I could only imagine what she must have been going through. And really, I had no idea. Losing Donnie, has devastated my world. In so many ways. I feel as if I have been crippled, like I have lost my legs and I'm learning to walk again. When I lost him, I lost so much.

In the 12 and 1/2 years we were married or 13 years we were together, my whole life changed. I stepped into full-time ministry and I learned how to sing all over again because let's face it, I had a full time vocal coach hounding me every moment. (Those of you who have worked with Donnie will understand that, haha! "Open your mouth! Pronounce the words! Swoop that note! Put some groove in your voice! You sing like a white girl!" LOL) We worked in various churches over the years and went through so much and learned so much together and refined one another. 

What was at first a semi-uncomfortable task for me to take on the role of being a Pastor's wife and being considered a Worship Leader instantly, over the years became second nature. We learned each other. I could feel where he was going in a worship set beyond the list we had prepared, he could tell when God wanted me to lead and it became such a natural exchange, an intimate dance before God of worshiping together. It was crazy, it was powerful, it was rich and it was an extravagant pleasure to worship and to lead worship with him. When I lost him, I felt I had lost that opportunity. Every time I heard worship or tried to worship, I grieved for him, because I knew I may never have that kind of intimacy with someone again. 

I didn't know who I was anymore. Who was I? I was no longer a wife. I was no longer a worship leader. I was no longer a caretaker. I just, was. I was lost. How could I even consider a future? Without him? My way of life for 13 years was gone. Who was I without him? My entire world revolved around him. I couldn't figure out my purpose. 

In many ways, I felt like my life was over. I literally felt as if my life had ended with his. I had no hope and I lived in gloom. After we settled in DFW and I had unpacked everything, I walked around in a Zombie-like stupor from room to room, not knowing what to do with myself. I took the kids to school and would come home in between and feel like I was going crazy. 

For the last several years, my days and nights had been filled with caring for him. I was so busy taking care of him and the kids that even in my relaxed moments, my mind was always filled with pre-meditations of what I needed to do next: fix his medicine, cook dinner, drive to dialysis, make a doctor's appointment, pick up his medicine, bring him something to eat, get his clothes ready for church, plan to leave early enough that if I have to stop for him to vomit on the way there we still wouldn't be late for rehearsal or church, make sure the kids homework was done, drive to church, prepare for rehearsal, enlarge the charts to fonts about 
10 TIMES the size of this because he couldn't see it otherwise. 

And so on and so on. It sounds boring and mundane to type it out, but my life  was full of non-stop activities that kept me extremely busy and focused on him, because he needed me and I didn't mind being needed. Most of the time. Oh I had my moments when I would get in the car to drive to the store and scream and cry and yell at God and wonder why my life had reduced me to a nurse. But I loved Donnie through all that and given the chance to go back, I wouldn't change anything that I did for him, not a second. I loved that man, no matter what.

But without him, I truly felt as if my life was over. For months I asked God what to do. And the answer I received was to simply, grieve. So I poured my time into grieving. I did whatever I felt like I needed to do in whatever given moment I was in. Whatever emotion came over me I let it out, I cried it out, I sang it out, I screamed it out, I cleaned it out, I prayed it out, I freaked out. I hid in my room under my covers. I watched Andy Griffith on Netflix all night long. (Sometimes that was the only thing that made me feel better.) 

I ate chocolate. I drank green smoothies. I worshiped. I sung Bon Jovi. I jumped in the shower. I wouldn't wash my hair. I gave the kids cereal for dinner. I made them steak and baked potatoes. I went out for lunch with my aunt or my friend. I stayed inside for a week like a recluse. I read books and  books and books. I watched TV and Netflix for hours. I talked about getting a job. I didn't look for a job. I did a little retail therapy. I watched my pennies and held them tight. I wrote a blog. I didn't write again for months. I journaled 3 days in a row. I ignored my computer for 2 weeks. 

I would go for a few days of feeling okay and then the world would crash down on me again and immobilize me for a week. I would have a week of feeling pretty good and then I would suffer through a weekend of severe anxiety wondering how I could ever live life again. I would be having a good day and then someone would ask me how I was and I would fall apart. I didn't want to talk to anybody about anything. I told the cashier at Aldi my husband died. I called and texted people in the middle of the night just to feel human and not alone. I still call and text people in the middle of the night just to feel human and not alone. 

I was crazy. I am crazy. I lost my husband. 

I lost my husband. 

I. Lost. My. Husband. 

I take the kids to The Warm Place (a grief recovery center for kids who have lost someone they love) and they go to their separate classes geared towards their age bracket. I attend the group with the adults who have brought the kids. We go around the room one by one introducing ourselves at every meeting, kind of like they do at Alcoholics Anonymous meetings. I can never make it through my introduction without crying. "Hi, my name is Sharon. I bring with me my son Kellan who is 10 and my daughter Emelia who is 8. We lost their father, my husband Donnie on November 22, 2012, Thanksgiving Day to 'cardiac arrest' after a long illness, a quick fall and an unexpected blood clot to the heart." 

We talk about our children. We talk about ourselves. We talk about our lost loved ones. Half the people are in tears and sometimes we laugh together over the absurdity of a shared moment, but we are all grieving. Grief is a process. It's like an ocean. The waves roll and crash, they rush and they recede, the tide comes in and the tide goes out, but it always comes back again. Sometimes it takes a few days, sometimes a few hours, sometimes a few weeks, but it always comes back in big waves or in little waves. And it hurts every time,  whether the waters crash over you and make you lose your balance or whether you're just wading through ankle deep water. It still hurts. I'm still grieving. It's getting better. But I'm still grieving. 


Tomorrow's Blog: A Love Story - A break from The Aftermath series to share my love story. Get ready to laugh.

Monday, September 23, 2013

The Aftermath, Part 3: My Grieving Children

The next few weeks of February found us settling into our new apartment. During our Christmas week in DFW with family, I had found a little 2 bed, 1 bath apartment in the same complex my mom used to live in and decided to move there. I unpacked boxes and found places for everything, started decorating and by the end of February had everything pretty much where I wanted it.

The kids settled into their new school, which is a great school by the way and they made new friends, fell in love with their new teachers and were doing well adjusting and maintaining their good grades. The first few weeks in DFW were somewhat exciting for them because of all the newness. But by the end of February after we fell into a daily routine and everything was just about done and set up in the apartment, it hit us all about the same time that this was our new life. Their daddy was gone and wouldn't be joining us here. It was just us and we were on our own.

Emmi started having a hard time at night again. Going to bed was difficult because that's when everything seems to come into a sharper focus for her. She always cuddled with her daddy before bed and gave him goodnight hugs and   kisses. Sometimes he would even go lay down with her in her bed to help her  fall asleep on restless nights. That comfort was gone now and her hero, her love, her protector and her cuddle-master was missing. She began drawing, journaling and writing songs and stories about Donnie. She tends to naturally channel her grief in healthy ways.

Kellan, who would rarely talk about Donnie unless Emmi or I started a conversation about him, began speaking out in some unexpected ways about his daddy. He brought up questions or comments about his death at very inappropriate times. He sang a silly yet disturbing song at the dinner table one evening about the night Donnie died. He told me when I kissed him goodnight  and tucked him in that he didn't want me to die. It took me a a few seconds to  gather myself and comfort him in those moments.

I am very open with them at all times and encourage them to talk as much as they want to about their daddy and share any memories, ask any questions and say anything they want to say. I've assured them that it's okay to cry when they need to and anytime they feel like doing so. I've held them in their tears and they've held me during some of mine and then we've discussed how it's good to feel your feelings and not keep them inside. 

We laugh together about funny moments we had with Donnie. One of Emmi's favorites to recount is one night when we were out to dinner after church. We  had eaten at IHOP and were about to leave, when Donnie saw an untouched sausage link on Emmi's plate. Emmi LOVES meat, just like Donnie did. It is rare she leaves any morsel of meat on her plate, but this particular time she did because she had dropped the sausage on the floor when Donnie had gone to the restroom with Kellan. So when he saw it, he grabbed it for himself in a teasing way from Emmi's plate. Emmi and I said 'Wait! NO! Don't!' ... but he had already placed the sausage in his mouth in a funny, possessive way and chewed it vindictively while staring at Emmi with an evil grin on his face! Then we told him what happened and we laughed and laughed and laughed. We all laughed and giggled the whole way home; it was so, so funny. 

We talk about the night of his death and I answer the same questions over and over for them. We discuss our sadness at losing him and our love for him and how we can't wait to one day see him again in Heaven, where we believe we will be reunited. We watch the funny videos he made on his phone, we listen to his voice singing and worshiping, we look at pictures and sometimes we just hold  each other because we need to.  

And we've started going to a wonderful grief recovery center for kids (and the adults who bring them) called The Warm Place. It's the same place Amy took Alana and Ian for 2 years after Gerald passed away. Kellan, who still finds it difficult to share his feelings about missing his daddy at times, has really taken to the atmosphere they have there. He will tell me several times a week he wishes it was time to go back to The Warm Place (we meet every other week on Wednesdays), so it's encouraging to me that he is able to talk and share there in a safe place with other kids who have been through the same thing.

Our emotions have evolved and processed somewhat and it's easier now to talk in some ways but grieving is such a process and for every person, it is remarkably different. Emmi is open and ready to share or ask for help if she needs it. Kellan is guarded and limited in what he chooses to say and only reaches out for help when he is absolutely overwhelmed or afraid. And I have had my own ways and difficulties of dealing with my grief which I'll share later, but the important thing is that we are making progress, little by little, which actually adds up to a lot.

Tomorrow's Blog: The Aftermath, Part 4: Crazy Little Thing Called Grief - An honest portrayal of my grief as it unfolds.

Friday, September 20, 2013

What NOT to Do if You Work For a Funeral Home.

I'm interrupting 'The Aftermath' Series to inject a little humor.  Remember the 'strange stranger' I mentioned in Part 1 of The Aftermath Series? Where should I start? Okay, I'll say it like this. If you ever work at a funeral home, here are some suggestions of what NOT to do or say to a grieving family member of the person you are being paid to care for and for whom you handle the sensitive arrangements of their loved one. Since the moment these things occurred I have laughed at their absurdity more than once...

Number One.

Do NOT under any circumstances send a friend request on Facebook to the deceased person's loved one, spouse, relative, etc. It's weird, in bad taste, strange and just plain wrong. I'm sorry, but WHY would I want to be Facebook friends with the representative of the Funeral Home that is taking care of the arrangements of my deceased husband's body? It's creepy as all get out. Just don't do it. Please.

Number Two.

Do NOT share how the dialyzing fluid in the peritoneal cavity splashed unexpectedly everywhere when you were preparing a deceased person's body upon hearing their loved one say they had been receiving dialysis treatments at home. I really didn't need that visual image expressed through your   inappropriate words in the middle of my stress when I was trying to pare down the services that I would prefer and just couldn't afford. I still have to tell myself to close my mouth when I think about it because it's usually left hanging open at the thought that conversation actually happened.

Number Three.

Do NOT say inappropriate things in front of someone's young children that could haunt their memory of the last time they see their father. Please. Don't walk up to me moments before we spend our last hour with my deceased husband when I'm nervous as all get out, trying to hold it together and keep my composure while being strong for my children and tell me you had trouble with my husband's body. Don't explain how you had to arrange for his arms to stay up on the table, we'll be able to see that for ourselves. Don't demonstrate with your own arms how his arms were flailing and flopping all about without the braces you rigged to hold them in place and then covered them with a pillowcase so we wouldn't see the metal. Don't say these things to anyone who is grieving about their loved one, let alone in front of their young and impressionable children. Really? Just, REALLY??? I mean, REALLY? SMH.

Number Four. 

Do NOT come inside the family viewing room ten minutes into the only hour they have left with their loved one and approach the spouse of the deceased person with a post it note when she is holding a child and talking to a family member in the little amount of time she has left with her husband. Do not give her this post it note and explain that the top figure is the full balance minus the amount received shown equaling the remaining balance due for the funeral home's services when you should know it's not the right time for that. So inappropriate. 

And Lastly, Number Five.

Do NOT run out behind the spouse's car from inside the funeral home with a mad urgency when she is about to leave to go to the Memorial service of her loved one at the church when you've already creeped her out multiple times. It's alarming. Especially when you come right up to her window out of nowhere and knock after she purposely closed the door in an effort to stop communication  and in attempt to gear up for her loved one's service. Do not ask her if she  wants you to run back inside and take the jewelry her husband was wearing off and bring it to her, when she already told you she would come later or another day to pick it up. Do you really think she wants to think about you running inside to rip the wedding ring and watch off of her husband's body and run back out to her with it at that very moment? Honestly?


TRUE. STORY. I kid you not. I have witnesses.

Monday's Blog: The Aftermath, Part 3: My Grieving Children - A closer look at how my kids processed their grief in the months following the loss of their Daddy.

Thursday, September 19, 2013

The Aftermath, Part 2: The Move

Over the next few weeks as I prepared for Christmas, I came to a decision that we needed to move. Although we loved our church family and they loved us, it was too painful to stay there without Donnie. We still went to church weekly on Sunday mornings but it was extremely difficult, especially for Emmi. Our morning worship service always included our youth and children and when worship ended they would release the youth and kids to go to their classes. Emmi was used to standing in the congregation every service, worshiping with her daddy as her worship leader. He was always there on the keyboard, singing and worshiping. And now he was not.

We would enter just after worship started to avoid awkward moments with people before service. I would stand and try to worship, but Emmi couldn't bear to look at the platform. She would turn to me and bury her head into my body, place her arms around me and weep, which in turn would cause me to weep. Then Kellan would join us as well sometimes silently crying, sometimes just looking sad. So I would sit and hold them through the worship service. It was strange, sad and weird. 

The kids didn't want to move away, especially Kellan. He didn't want to leave his friends at school or church. And our Pastor's family was like family to us. It was difficult for all of us to imagine not being near them. But I couldn't stay in that house, it felt so empty without Donnie. And because we lived 45 minutes from our Pastors, we only saw them on the weekends briefly at church and sometimes for lunch afterwards (after Donnie's death I could only bring myself to attend one service a week instead of our normal 3 services). All week long I would face an empty house while the kids were at school and when they were home, it was still strange because we as a family were always together with Donnie. We went everywhere together, did everything together and were never without one another, ever. So even though my Pastors were like family, I still felt alone because our lives were in different cities, nearly an hour apart except for a brief time once a week.

I decided to move to DFW, TX. I had family there. I had friends from old workplaces there. I had church support there. I knew the area having lived there before and it just felt like the place we needed to be. So after Christmas when I began packing up the Christmas deco, I also began packing up our home. I purged A LOT of things. I threw away tons. I gave away tons. I put tons aside for a massive yard sale. I packed nearly my entire household by myself over the course of the next 3 weeks. It kept me busy which helped a lot since any moment of stillness was torture for me. By the end of January, and with a lot of help from our church members, music team and from our Pastors and their extended family, we got it done. I had everything packed by the last Thursday of the month, had a major yard sale on Friday, loaded up a truck on Saturday and moved on Sunday. 

When the house was empty after loading the truck on Saturday, I walked through one more time by myself to make sure nothing had been overlooked and to say goodbye to the home we had lived in for nearly 5 years. That was the moment I began to lose the control and resolve I had been living on the last few weeks. I crumbled. Life here was over. We were leaving for good. And it felt like I was saying goodbye to Donnie all over again.

When I had to say goodbye to my Pastors, my heart broke some more. I grieved over saying goodbye to them, to losing them as my Pastors, to leaving them as my friends, as my family. They were so good to us. They never complained about Donnie's illnesses over the years we were with them. They never shunned us or made us feel guilty when he was incapable of making a service due to being sick for one reason or another. They never held his health against him or made him feel like less of a person because of the inconveniences his health caused. They always prayed for us and over us and encouraged us and lifted us up. And they treated us like royalty. They were Jesus in flesh to us. Uncondemning, loving, unconditional, kind, generous, protective, sacrificing. (Thank you Nathan and Cyndee Fleetwood.)

It was difficult to leave and to say goodbye not just to the friends and members at Victory Life Church where we had served for 5 years, but also to the life I had known with Donnie for 13 years. To leave our ministry behind, relationships behind, history behind. My sis-n-law Amy (my brother Gerald's widow) and her then fiance/now husband Darryl drove up and helped me by driving the truck, towing my car and letting me ride worry free from Silsbee to DFW. I was exhausted and full of mixed emotions, relieved and yet heartbroken. I left part of myself there. I lost part of myself there. I gave part of myself there. I suppose in a way I can never fully say goodbye.

Tomorrow's Blog: What NOT to Do If You Work For a Funeral Home - An amusing detail of some rather inappropriate situations I encountered when dealing with the Funeral Home for Donnie's Memorial Service.

Wednesday, September 18, 2013

The Aftermath, Part 1: The Surreal Whirlwind

Thanksgiving day 2012, I was sitting in a funeral home planning out my husband's Memorial Service with a stranger and my friend who also happened to be my Pastor's wife. Only a few hours prior to that, I had to tell my children what a Doctor had just told me; that their daddy, who they had just cuddled with only a few hours before, was dead. My mind was reeling as I sat in front of this strange stranger discussing numbers and services that were mumbo jumbo to me because what was really ringing in my ears were Donnie's last breaths.

Although looking back it feels like a whirlwind, I remember every little moment of the next few days. I didn't black out or block out any details from my mind. I didn't live in a fog or go through the motions. I very intentionally got things done, lived by a list and crossed off items one by one. I slept very little and ate very little. I made hard decisions, I cleaned up the mess the EMT's left behind, I met with friends to plan Donnie's service and I held Emmi each night as she cried herself to sleep on her daddy's pillow, saying 'Daddy, Daddy, Daddy' over and over again in her broken sobs.

I was overwhelmed by emails and phone calls and instant messages and texts. I was asked: "What happened? What can I do? What do you need? When is the service? How are the kids? How are you holding up? Will you stay there? Where will you go? Have you thought about what will you do?" Some questions I could answer and some I could not. 

The next day was Emelia's 8th birthday. We had a small party for her at the church along with a meal that was prepared for friends and family coming in and for those who were helping me plan out Donnie's service. There's a picture or two of Emmi with a plastic crown on her head and a small smile on her face. Her eyes were still swollen and she was quiet and subdued, just not at all herself. 

His service was on Saturday, 2 days after Thanksgiving and 1 day after Emmi's birthday. My family and some close friends of ours were able to gather together with Donnie for an hour before the service. I couldn't afford to have him at the service just a quarter mile down the street, so we spent time with him there. It's not the way I would have chosen, but it was my best option at the time. 

It was different. He was on a table with wheels and they had covered him with what I would call hospital blankets because I couldn't afford to place him in a coffin even for just an hour. Despite the weirdness of the table and being able to see the wheels peeking out beneath the blanket, he really did look great. I had picked out his favorite suit and a baby blue shirt and some funky socks that he loved. But the blanket was crooked. And it was driving me crazy because it would have driven him crazy. I should have straightened it or asked the strange stranger to do it, but I just sat there and stared at it off and on for an hour. 

The memorial service at the church was amazing. We had a large framed photo of him in front of the church and honored him in several different ways. We laughed and we cried, shared memories and sang songs. It was just the way I wanted it. We had another similar service a week later in Louisiana at his home church. I was told by someone they had never been to a Memorial service like that before, which made me feel good. I thought it was fitting for Donnie because there was no one else like him. 

The second service which was held in Louisiana was more difficult for me. I guess because I was surrounded by the people that knew him best and with whom he had spent most of his years and also because this time, his remains were there. And maybe also because the kids weren't there (they didn't want to go through it a second time) I didn't feel I needed to be quite as strong as I try to be when I'm with them. The emotion was more raw and it was much harder for me to keep myself together. 

The internment was short and sweet in a beautiful Louisiana cemetery filled with white tombs ornamented with crosses, angels, Jesus's and Mary's. A few words were said and then a prayer was spoken. We stood a few moments letting the finality, that strangely didn't feel final, settle in and as I walked away from the family tomb he was placed in, I knew when they closed the door I would be separated from him, this time for good. It was surreal.

I spent the next few days with my family in North Louisiana and then headed home, back to our house, back to the kids' schools, back to church. Pulling up in our driveway without him made me sad. Walking in our front door and seeing the EMT's jacket and glasses that had been accidentally left behind made me sadder. The kids and I brought in our luggage and I put them to bed and then watched some TV while they slept. 

It was 3 weeks until Christmas.
  


This video was shared at both services. It's a collection we compiled from videos we found on Donnie's phone. It's 12 minutes long, but it's a fun ride when you have a few extra minutes. He was such a kook. :)

Tomorrow's Blog: The Aftermath, Part 2: The Move - Why I decided to move to DFW & How I did it in one month's time.

Tuesday, September 17, 2013

So What Happened?

**Please know that this particular blog entry includes a lot of detail on Donnie's health history and details of the night he passed away. It was difficult to write and for those that know and loved Donnie, I expect it will be difficult to read. So please, if you feel that this will disturb you, feel free to not read this blog entry. It won't offend me in the least. I just felt I needed to write it out and so many people have had questions that this may finally answer, as well as to quell any rumors or misleading assumptions about his death. Thanks.**

It's been nearly 10 months now since I lost my husband. I've debated over writing about Donnie's death and initially I had planned to do so fairly soon afterwards but when I tried at the time, I found I just couldn't. It's been a long road for me to get to where I could sit down and write it out, moment by moment and it's still difficult, but I'm thankful that at least in this moment, I think I can.

So many people wanted to know what happened that night. What was his cause of death? How did it happen? Some shared their opinions of why he passed and some assumed it was one health problem over another. I received a lot of private messages, texts and phone calls asking for details that I just wasn't quite ready to give. 

Honestly, I don't have the medical facts to back up my opinion, but as I was his help mate and companion and even eventually his caretaker, I have settled on what I believe to have happened and the reason that I believe caused his death. I know I've written a lot here, but I feel that I need to maybe not for you, but for me. It's cathartic to put it into words. And this way I can just refer someone to my blog if I'm not up to discussing it at some point, because the questions do keep coming. So here is my story and my opinion.

Donnie had a lot of medical issues that came up over the years. He was diagnosed with diabetes in late 2000, but lived well and learned to control it through a combination of diet, exercise and medication. In 2004, as the Doctors then put it, he 'spontaneously contracted' Necrotizing Fasciitis or NF (the flesh eating disease) in his left leg. You can read about that story by clicking here. 

Long story short, he survived NF but came close to death and the trauma/devastation of that disease left residual nerve damage in his leg as well as other complications that arose more prominently over time, including foot drop which led to his L big toe amputation in 2006, overcompensation for the L leg nerve damage which led to his R big toe amputation in 2007, restless leg syndrome, painful neuropathy in his L leg, susceptibility to any common bug/virus because of his low immune system after being on such strong antibiotics so often, hypothyroidism, high blood pressure, a severe candida infection/stomach issue that came back any time he was placed on antibiotics and eventually the last 3 years of his life he had to be placed on an antibiotic 'forever' for the candida. Without this antibiotic he would become so ill that he would vomit non-stop. Literally, non-stop, every 3-5 minutes or less. He also dealt with chronic sinus infections, headaches, nausea, IBS and more. This all became the norm for us, the things he dealt with every day.

Between the Thanksgiving and Christmas holidays of 2010, Donnie became very sick, beyond his normal day to day issues. Over those weeks we were in and out of the Dr's office and the ER at least 1 or more times per week. He had an infection that was being treated by his PCP, ER Doctors (who didn't want to admit him) and antibiotics, but he continued to grow more and more ill. On Christmas day we went to the ER once again and this is when we received the report of his kidneys beginning to fail and along with that he also lost a great deal of his vision almost overnight. You can read more about this by clicking here.

By March of 2011, Donnie started dialysis treatments and gained some stability. We settled into a routine for dialysis and dealt with its occasional obstacles and his continual health problems relating to the kidney failure or his pre-existing health issues as well as some new issues that developed from kidney failure. One of the interesting perks of dialysis for Donnie is that it really stabilized his diabetes. The dialysis caused his sugars to nearly always be normal or sometimes a little low from shortly after he started dialyzing in early 2011 until the time of his death. So his diabetes was largely under control for the last 2 years of his life.

During the summer of 2012, the nurses at the dialysis clinic approached Donnie about starting perinatal dialysis which is a dialysis treatment that could be done from home and potentially give us more flexibility schedule-wise instead of losing 3 days a week to treating at the clinic. They felt he was a good, strong candidate and would do well dialyzing from home. Donnie and I talked about it and he felt he wanted to make this transition. I was more hesitant about it, because it would put more responsibility on me and I would become even more of a nurse. But I wanted him to be happy and I supported his decision and we moved forward by planning the surgery to set up the ability to dialyze this way and his training for the home dialysis. 

The surgery was scary. They had trouble afterwards with his blood pressure and when he woke he was still intubated and they kept him overnight to make sure he was okay when it should have just been an outpatient procedure. From that time forward, I found that he did not have as much strength, stamina or stability even in his daily tasks of living. He seemed weaker and activity wore him out even quicker than before. He walked a little less stable and had to have help even more often at home and at church getting around. He wasn't able to cook as often. I mention this, because he LOVED cooking. It was something he enjoyed doing and made him feel normal, independent, in control and helped take his mind off of his discomforts. Before kidney failure he enjoyed cooking nearly daily, after dialysis started in 2011, he cooked a few times a week if he felt well and after the surgery to put the port in for the home dialysis, he rarely cooked. 

We finally started the home dialysis in October. Everything was manual, meaning we (I) had to dialyze him every 4-6 hours. It was a lot of work, but we were promised that by the beginning of the year, we could do it by a machine and everything would be so much easier and better. I logged everything, I mean EVERYTHING in a book that the nurses would check every couple weeks. Every time he dialyzed, which was about 4-6 times a day, I would check his blood pressure, his temperature, his pulse rate, and I would log his intake of dialyzing fluids as well as the outtake, so I knew how much he weighed, what was normal, if he was dialyzing enough, and so on. I was on top of every aspect of his treatment at home. We wore gloves and masks and were very sterile in our environment each time he treated. Things seemed to be going well, the numbers in the book were right. His home dialysis was working.

But he just wasn't quite his normal self. His strength waned even more and his balance became even worse. We were about 3 weeks in to the dialyzing at home and I was walking with him everywhere he would go in the house either supporting him or helping him up from the bed or even just following him closely with my arms out in case he needed help. One Sunday after church, he fell in the bathroom. He'd forgotten he had taken off his shoes and couldn't see them on the floor and tripped over them. He fell into the washing machine and bruised up his arm and shoulder but he was okay, just frustrated and sore. A few days later, he fell in the living room and broke a table leg, scratching up his arm a little, but he was okay, again just frustrated and sore. 

A couple days after that, it was Sunday early morning and we were getting ready for church. He had a very difficult time getting out of bed and he just had no strength. I asked him did he need help and he said 'No, I've got it'. As I stood there watching him struggle to gain his balance and stand on his feet, I asked him if he was sure he didn't want my help and he said no, again. As he started moving to the hall doorway I watched him and was cringing inside because he was obviously having great difficulty walking. I asked him one more time if I could please help him and he said "NO." I told myself to let him be, let him have his dignity, leave him alone and I turned my back to walk away and get his clothes ready. The next thing I heard was a heavy thud and his cry. He had fallen in the doorway of the bathroom. His L foot (the leg with nerve damage and the foot with drop foot from the NF in 2004) had caught and caused him to fall into a split, HARD on his already damaged L leg. 

He couldn't get up on his own. He didn't know if it was broken. He was in a great deal of pain. But he STILL wanted to go to church. (I'm laughing right now because he was so, so stubborn. He lived to worship and hated when something happened to keep him from leading worship at church.) So I got the rolling office chair and brought it to him and helped him up off the floor and rolled him to the bed to rest for a few minutes before he finished getting ready. After that he could not get up again, even with my help. We decided to call an ambulance and we went to the hospital instead of church. 

At the hospital, they said it was 'just a bad contusion'. They did an xray, an MRI and consulted with another Doctor to rule out compartment syndrome and then when they found out he was a perinatal dialysis patient, they rushed us out the door telling us to follow up with our PCP in the next few days. I had to call our Pastor to meet us at home and with his support on Donnie's right and my support on Donnie's left it was the only way we were able to get him up our front steps and into the house onto the bed. I called his PCP the next day and they scheduled us for a week and a half later. His leg was swollen and bruised badly. It was as if the bruise was bleeding inside his leg and over the next few days, it spread over almost his entire leg, from his bottom to his mid/lower calf and then it spread almost all the way around the sides and top of his leg, leaving only a thin strip unbruised about an inch wide and 7-8 inches long where his skin graft was. So nearly his entire leg was covered in this horrible deep purple/black bruising.

I continued dialyzing him every day and calling the Dr's office every 2-3 days trying to get them to send someone to our home because he couldn't walk.... BECAUSE HE COULDN'T WALK. I literally had to lift him on and off the bed and place him in our office chair and roll him to the rest room and back to bed. He was too weak to do anything, I even had to help him take sponge baths because he didn't have the strength to lift his arms. The pain in his leg was excruciating for him, he could not bear weight on it at all. I didn't think I needed to take him back to the ER because they seemed so nonchalant about his injury and that he just needed some rest and to follow up with his PCP.

On the day of his appointment with his PCP, it was also the day before Thanksgiving and it had been a week and a half after his fall. I called his PCP once again (this was the 4th or 5th time) and told them there was NO WAY I could get him to their office, I stressed once again that he could NOT walk and I desperately needed someone to come to my house as soon as possible. Within an hour and a half they sent a home health nurse to our door. She came in and asked a lot of questions for about an hour. She checked his pulse, she took his blood pressure, she checked his temperature and she remarked at how great his levels were. She said since it's a holiday weekend Thanksgiving being the next day, we shouldn't expect to see anyone until Monday or after and then she left. This was about 2:30, 3:00 in the afternoon. 

I fixed the kids and Donnie a meal and then about 4:30, 5:00 I went to the store to pick up a few things for our Thanksgiving meal for the next day. I returned home, did another dialysis exchange for Donnie, made dinner, we ate, we watched some TV and then it was about 10:30. I called the kids into the bedroom and told them to hang out with us for a while. Kellan cuddled with Donnie for about 20 minutes while Donnie was sitting up in the bed and Emmi cuddled with me. Then we switched and Emmi cuddled with Donnie while Kellan cuddled with me for another 15-20 minutes. We shared a lot of sweet kisses and hugs and I love you's with the kids. Then I sent the kids to watch TV in the living room because I had a horrible headache all day and wanted to rest my head for a few minutes before taking Donnie to the restroom to wash up before bed, change the sheets, do his next dialysis treatment, prep the food for Thanksgiving and go to bed myself. 

A little while after the kids left the room, Donnie was still sitting up in the bed and after a couple minutes he half turned his head toward me and said very calmly and kind of thoughtfully, "I feel funny". I asked him what was wrong and he said he didn't know. I asked him if he was hungry, if he was thirsty, if he needed some medicine, if he wanted some ice, if he needed me to do anything, and each time he answered "No". I asked him if he was okay, if he was sure there wasn't anything I could do for him and he said "No, I'll be alright. No, I'm fine". I asked him if it was okay if I closed my eyes for a few minutes to try to get rid of my headache and he said sure, so I did. 

A couple of minutes later, he layed down beside me from his sitting position, facing me. I had my head buried under my pillow and was pressing my temples and my eyes, trying to get rid of my headache. When he layed down, I peeked from under the pillow and through my fingers at him to make sure he was okay. He looked relaxed. Then I ducked back under the pillow and continued to press my pressure points. 

Within the next minute or so, he was snoring. And I breathed a sigh of relief. Because if he was awake, I was always on alert. I knew at any moment I may have to jump up and get him something, or help him to the bathroom, or grab a vomit bucket or do whatever it was he needed. But when he slept, that was the only time I could truly relax. So I remember very vividly, sighing aloud and thinking to myself 'Oh thank you God, he's sleeping. Now I can relax a few minutes and maybe get rid of this headache before I have to get up and do our bedtime routine'. So I relaxed. I chilled. I pressed my pressure points. And I breathed another sigh of relief.

It was probably within about 10 or 15 minutes, when Donnie exhaled in a very long, low and deep way. I chuckled, because over the last couple of weeks he had been doing some really hilarious stuff in his sleep. He would have these very vivid dreams and he would talk, he would sing, he would hum, he would giggle... it was just so funny. I would often capture it on video, show it to him later when he woke up and we would have a good laugh. Then he exhaled again, the same way. I peeked at him through my fingers from under my pillow again and said, Donnie? He did it again and I thought, 'This is weird', put my hand out and rubbed his arm and said 'Donnie? Honey, wake up'. 

And that's about the time I realized something might be wrong. That's as far as I'll go in detail here. But basically, after another moment of trying to wake him and checking his pulse on his BP cuff, I realized he had stopped breathing. And a few hours later is when I knew he was really gone.

So that's it. It happened so fast. Yes, he had so many health issues. Yes, he had diabetes. Yes, he was in renal failure and on dialysis. But his diabetes was largely under control. His dialysis was going well. His blood pressure, pulse, temperature and fluids I monitored multiple times daily and none of it was out of wack. The home health nurse had been there not even 10 hours before and all his levels were great. 

His death certificate reads 'cardiac arrest' as the cause of death. His heart was checked with EKG's regularly (about 2-3x a year) by the clinic, just 2 months before when he had the surgery that enabled him to do the home dialysis, and the Sunday prior when we went to the ER after his fall they checked it there as well and every time he had it checked, they all said "Your heart is great!" which was always a reassurance to us because it was one of the few areas nothing was wrong.

No autopsy was done due to Donnie's extensive health history. So we don't 'actually' know what took place. It could hypothetically be attributed to anything. Any one of his more serious health problems you could probably make a case out of and go with that, or say it was a combo of all of the above. But in my opinion, this is what I think happened. I think that Donnie had a blood clot travel from his severely bruised and blood filled injured leg to his heart in that small space of time after the kids left the room from our cuddling session. I believe that's why he "felt funny" and couldn't describe the problem to me. I know I'm not a doctor and I have nothing to prove that, but it's what I believe because all his stats were consistently good to great throughout the dialysis log I kept and confirmed by the home health nurse that very afternoon. It happened so quickly, in a matter of minutes and I honestly can think of nothing else that would suddenly cause his death even in the midst of all his other health issues. Nothing else makes sense to me. So that's what I believe; it was a blood clot.

For the longest time, all I could remember was the moment of his death, his last breaths that I didn't know were his last breaths. It haunted me. Oh how it haunted me. But now that I'm mostly past that, what I remember most is his face. His sweet peaceful face. There was no pain on his face. No anxiety or distress. No discomfort or displeasure. His expression when I looked at him was one of sweet sleep and peacefulness. He looked as if he layed down to take a nap and fell asleep, which is exactly what he did. And that is the moment that I choose to keep with me, to carry with me. I believe he didn't suffer pain when he passed, because if he had, he would have told me in those moments I was questioning him. I believe that although it may have been distressing for me to lose him, for him it was peaceful in those moments, and for that I am so very, very thankful. 

Tomorrow's Blog: The Aftermath, Part 1: The Surreal Whirlwind - An inside glimpse into our journey of the days following Donnie's death.

What's Around the Bend...

I'm writing a series of blog posts related to Donnie's death. 

Some will be serious, some will be funny, some will be both. Some will be difficult to read. Some are difficult to write. But it's something I feel I need to do, I want to do. For me. For memory sake. For the kids questions in the future. For Donnie. To get my feelings out. To vent. To help others understand grief. To help others who may be grieving. Just so you know what's coming. 

Of course, I'll still write about other things. I don't expect this blog will be only about grieving, I've always just wanted it to be about my life, my family's life and all that it encompasses. The good, the bad and the ugly. And the snorts of laughter in between. Because I do love to laugh. And I'm so glad to be finding my laughter again. I know Donnie would be happy about that. We used to laugh and laugh and laugh together. I think I'll write a blog about that too. :)

Redeeming Love

* Not written to seek sympathy. I’ll be honest. Father's Day has never been my favorite holiday. I would stand forever in the Hallmar...