Daily Living on a Grief Journey

My family and I are on a journey unlike any other. We lost my husband suddenly in a 5-day ordeal we were totally blindsided by yet we are stronger than ever twelve years later, living, loving, growing, surviving, functioning and still feeling the effects of him being gone. I am hoping our experiences outlined here will help you be prepared for a loss of a loved one or help you handle a loss you are struggling with.

Healing From An Unexpected Loss of a Loved One

We have a big family by today's standards; five children and two parents, three married-ins, four grandchildren. Our children range in age from 38-18 and yes, all from the same mom and dad! Our extended family is up to 60 people and these are people we love and see twice a year for the past 40 years. So, family is a big deal to us.

When John was being wheeled out the door of our home by the EMTs, I never even gave it a thought it would be the last time he would leave our home. My personal resources kicked in and I was just doing what experience and faith taught me to do. I am still doing that twelve years after losing John. Some days I ask myself how I got this far because honestly, I could not have written these words today if it wasn't for John, but here I am. I digress.... John died from the result of complications during neurosurgery from a DAVF which is similar to an aneurysm. He was taken from us "like a thief in the night"; like the scripture that says "we know not the time nor the hour." We huddled with our close friends at the hospital on that first night praying and feeling like all would be OK when we got a handle on what "this" was and how do we fix it. We thought that way because John was an engineer for 31 years and he could always fix what was wrong with intelligence and logic an engineer is blessed with. My oldest son and I stayed at the hospital that night and friends came to sit with me the next day.

It was discovered during exploratory surgery that John had this DAVF and they went in and started to fix some of it but it was larger than normal and very complicated. So much so that every time I talked to these high level physicians, I felt like they were baffled. They did not understand how he could have acquired the DAVF and told me that maybe in 10, 20 or 30 years they will have more knowledge than they did now. But, they were going to still try and cauterize the capillaries that were causing the problem and were hopeful this would work. John was in an induced coma and had been since he arrived at the hospital. After a day of rest, the doctors went back into surgery for the same procedure hoping to complete the job. During this second surgery, a risk factor that was explained to me completely, happened and John lost all brain activity. In a case such as this, one can only be declared legally dead after two tests done 24- and 48-hours after the incident. So we prayed for a miracle.

Hundreds of people across the country prayed for us, came to stay with us at the hospital, and ran our household; family flew in, and on that Sunday, Valentines Day, 48 hours after the incident occurred, John was legally dead. Very soon after we said our goodbyes, we decided to donate John's organs.

I personally found it difficult to read at all - period. In talking with two other widows and a widower who experienced the same thing, it became a commonality. There is a plethora of books on grief and healing. You simply need to page through and find what works for you.

One Month Later...

Spring break was just one month after John died and we needed to get our minds off of what we were living. We had planned to go to Galveston during spring break and decided to stick with the plan. Some good friends that live near Galveston took turns hanging with us so we weren't alone except for the last day we were there.

How do I explain what happened on the beach that last day? Something that has never happened to me before.

My two younger kids were playing happily on the beach, it was a beautiful day, sunny, warm breeze, we found an isolated beach that was quiet except for the gulls and the waves. The day before, I stood looking out at the ocean (Gulf of Mexico) and said to my friend, "it's so infinite" because here we were on this big beach with this big ocean and then I thought about what a speck we would be compared to the size of the world and infinite was just the word I could not get out of my mind for the past 24 hours. As I stood there on that beach it was as if the words and music just literally dropped out of the clouds, into my head and hands. I ran through the sand to the car (parked on the beach) to get paper and a pencil to immediately write down this Divine inspiration! Well it came and came and the tune came in just a one-line fashion and I just couldn't believe it was happening. I was completely amazed! Upon returning home, I worked to complete the song and sat at the piano I have played for most of my life and finished my first song.

The second song came so suddenly after the first, it rather scared me. What was happening? It was a ballad of the last days of our lives together and my experience in those days. All said and done, I have words to 9 songs and music to 5 of them. It has been very enjoyable to compose this music - something good from something bad.

Music continues to be therapy for me and an outlet for my emotions. So many songs elicit memories that can immediately brake me down to sobbing no matter where I am or what I am doing. Yet, I continue to listen to these songs, not as a punishment, but as a way to express the feelings I sometimes have to shelf or cannot pay attention to. Music is a huge part of my life.

So many "firsts"...

No matter when your loved one passes away, you must face a calendar year of birthdays, anniversaries, holidays, graduations, celebrations and memories to cope with the "first" time without your loved one. This is not easy because half the time you don't want to be present for all these happy occasions but they come irregardless. I had to go to my nephew's wedding six months after John died. I love this nephew and our extended family very much but the anxiety creeped in and it was so difficult to walk into that room where we gathered without my husband, their uncle, brother, son, by my side. When I hugged everyone, I was simply speechless. Fortunately for me, my family understood and just hugged and held me back. I realized they probably felt the same way. After the initial greeting of everyone, I settled down and enjoyed the celebration.

There were times of unease, walking in to the wedding, taking the pictures, but for the most part I felt victorious that I managed myself well throughout the weekend. If I felt like crying I did, if I felt like dancing I did; you MUST do what works for YOU and not what you are expected to do or what you would have done in the past. This is so important to listen to your inner self and act on it. It is being true to how you really feel and they is the key to healing.

The good news is after the first year I felt a relief that I made it - I made it through one whole year running my household and loving and caring for my family and myself! The bad news is the "firsts" weren't over yet....

Done with the "firsts" - NOT!

There will be many more "firsts" to come and you may be prepared for them or you may not. One that I was not prepared for at all was my son entering high school. Keep in mind we have a 20-year span between our children so I had experienced high school with a spouse by my side for the first 3 of our 5 children. Now upon returning, I wanted so badly to be the old me instead of the new me. My son didn't have any trouble making the transition, it was just me. How could I participate as a parent again, alone, even with the support of some very caring faculty/staff? It just was a huge hill for me to climb. One of the things I did that helped me A LOT was to have John's wedding band resized and become part of my two-ring ensemble. I also switched my rings to my right hand; this was an outward sign for me that I needed to do and it gave me great comfort.

It's still difficult for me to attend friends weddings and funerals by myself but fortunately, I have a lot of friends who recognize this and offer to pick me up or go with me.

Important Emotions to Pay Attention To

Memory Loss

I wrote this article during the holiday season. I tell you this because I am in charge of a Christmas program at our school. When planning for this year's program, I simply could not remember what we had done last year. It was a blank. My boss started giving me some clues and a few details came to me but it wasn't until two weeks later in another conversation I really started to remember what we did last year. Why? Because I was on auto-pilot the previous year. I was doing what I was supposed to do and expected to do and did it well but not with a full heart. This is just one incident I experienced, there were several more but don't worry about them because when we are under duress, your brain just does what it thinks you can handle and you discard unimportant information and continue on with the true tasks at hand. There is a lot of information out there about memory loss and grief so please learn more about it.

Anxiety

I never knew this about losing a loved one before; in the days leading up to a special date the anxiety is overwhelming. It can start a few days before, it can start a month before, a week before, it can hit you blindsided, but what I found was that it was always worse in the days before the special date, and the special date went by rather smoothly. It was a huge relief when the day was over, only to have your mind figure out what the next "big one" would be and start dealing with it. It is helpful to have a way to express your anxiety so it doesn't get the best of you.

Always keep in mind that there are days before and after the actual anniversary date that cause strife for the loved ones left behind.

Despair

I have not experienced despair so deep that I had to act on it. But, I have learned that if you go this far, you must seek help for yourself or for your family. You can start with your clergyman or your school system, they often have the resources to guide you in the right direction, and if that help is not available, of course then medical attention.

Self-care can make a big difference as you work towards accepting the difficult changes in your new "normal". I offer these heartfelt suggestions.

• REST: This can come in many forms: meditation, putting your feet up, or retiring early for bed and just relaxing. Grief work is exhausting and you need to include some form of rest in your daily routine.
• CHOOSING HEALTHY FOOD AND DRINK: Purchase foods and drinks that are full of quality nutrients. Load up on fresh fruits and vegetables, whole grain breads, cheeses, yogurt and lots of water.
• EXERCISE: While this may sound like a word full of effort you can up- or down-scale as much as you are able. From just getting out in the yard or garden; going on a fresh air walk or run; or heading to the gym; exercise releases chemicals in your body that relieve pain and reduce stress while building up strength.
• ALONE TIME: Quiet time enables your heart and your mind to adjust and accept the new reality of your life, even if it comes with tears. You may need this now more than ever.
• SURROUNDING YOURSELF WITH COMFORT: Start with the people who comfort you and move on to more individual activities like listening to music, reading a book, going for a walk, worship experiences - all the things that used to soothe you can be, once again, a focus of your life.

The WARM Place

We had been previously introduced to The WARM Place by some friends of ours who needed the service. The WARM Place is a grief support center for children. Four out of five of my children decided to attend the center and by default since the remaining parent has to transport them there and back, the center hosts a class for the grieving parent too. This has been an integral part of our healing because in the sessions you attend, everyone is going through the same situation which allows you to dismiss the thought of what everyone else will think because those present have lived a similar circumstance.

It is one big comfort zone and as a result, a bond is formed. This is especially helpful for the children because at a grief support center, you can talk about your mommy or daddy freely since you are with peers who experienced the same thing. (There are classes for grandparents, siblings and friends - it's such an awesome place!)

Here is a link to The National Alliance For Grieving Children. This would be a good starting point to find help in the area where you live.

The WARM Place is in Ft. Worth, Texas, and was the first organized center for grief support for children in the state.

The Gift of Life

Four People are Living Because of John!

We chose to donate John's organs. It wasn't a big plan we had agreed upon ahead of time or something you have a lot of time to mull over. You have to make the decision right after the death. There should be a representative from the local organ transplant association at the hospital or on call. They work with the family to get all the paperwork in place. The medical staff will deem what is healthy and viable and let you know afterwards what was donated. In our case, John's heart, liver and both kidneys were in pristine condition and four different people are living today because of it! He also was a tissue donor. Why do this? I'll tell you why, his youngest sister had a double mastectomy at 38 years old and needed tissue for the reconstruction. We didn't think for one minute how wonderful this would be to pay forward for her gift.

Protocol guides you through the organ transplant process. Ask questions and make sure you understand the entire process while it is happening and a representative should keep you abreast every step of the way. You can try and communicate with the recipients at any time through the transplant organization, but with no guarantee that you will get any response. Fortunately for us, just two months after receiving one of John's kidneys, the recipient sent us a card - a beautifully worded card that I still cherish. I never heard from anyone else in that time. Upon the one year anniversary of John's death, I wrote letters to all the recipients asking how they were doing and explaining that it would be helpful for us on our grief journey to know how they were doing. I received another card from the right kidney recipient stating her gratefulness but she did not express the willingness to meet - that was OK. I then received a letter from John's liver recipient and also a letter from each of his two children, that was very moving. But the big one came from John's heart recipient, they not only wrote us but wanted to meet us! This was very moving to me as I had envisioned this meeting since our ordeal began. Back to protocol, I then had to send my contact information to the transplant alliance, they acknowledged receipt, sent it to the recipient and finally the recipients family sent us a personal letter to our own address! From the time I wrote the initial contact letter, the whole process took 7 months! Some of that was me slowly taking the time to respond, but most of it is the long period of waiting as the alliance abides by the law. We are grateful we can even find the information out as I am learning that organ donation is not about what you give away, but what someone receives.

How Can You Help?

There are literally thousands of people waiting for organ transplants and it goes without saying if the organs aren't donated, someone needing them is not going to live. We live on a small cul-du-sac of nine families. Of those nine families, one-third of them have been directly affected by organ donation. Our neighbor and her son had a kidney transplant, and another neighbor didn't make it while he was on the list to receive a heart. Then of course there is John who gave the gift of life. February 14 has been designated as National Organ Donor Day - quite ironic for us, don't you think?

If you have been putting this off, please consider doing it now. Go to the National Organ Donation Registry and Donate the Gift of Life.

Heart Recipient Meets My Family

November 25, 2011

Yesterday, all seven of us left the driveway in two cars for a journey unknown but one that was dreamed about, read about, and even seen portrayed on TV and in movies. And to me, that's exactly what it felt like. It took us an hour to get to the home of Lindy & Delyn. Lindy is John's heart recipient.

I had spoken to Delyn a few times this past week and she is a bubbly and bouncy woman. As we pulled up to their modest little red-brick home, she was on the porch waiting for our arrival. Lindy was also standing inside the door waiting to see and meet us. Lindy is 64 years old and a quiet, reserved man. (Delyn had told me this prior to our meeting. She also said she did not know how much he would speak but for us to just know he was a quiet soul.) He greeted us warmly and immediately said to me, "come here, I have something I want you to listen too." But I wasn't quite ready yet so I asked him if I could wait a bit. We gathered in the living room and the talking began. They told us how sick Lindy had been and that his heart was only functioning at 2%. He was literally on his deathbed and they knew it. He had only been put on the heart transplant list that week and was declining in health by the day. We learned that people on "the list" don't necessarily get a heart because they are near the top of the list and that many other factors have to coincide in order to be a recipient. Some of them are: seriousness of health, blood type and matching, and size of the heart. Well, Lindy was a match and while he was so sick on that Valentines day, rather jokingly but very seriously he told Delyn, "today I'm going to get a heart, I just know it, it's going to happen today." How did he KNOW?

Delyn described their mad scramble after they got the call to head to the hospital in the city. They didn't pack a thing, they just got him in the car and headed there. This happened on Monday night and the transplant was late Tuesday night. (We did not share any of our angst that we went through during those 3 days of waiting.) Delyn told us how ashen and terrible looking Lindy was when he went in for the surgery and how pink and bubbly he was as soon as he came to. She could not believe the difference!

Lindy has had a few other health issues since the transplant but through them all, the doctors always tell him his heart is perfect and it is the least of his problems. He was so grateful and spoke some very beautiful words to us. Mostly, both Delyn and Lindy feel like we are part of them now and they asked us ahead of time to bring a picture of John. They set the picture right on a shelf with other family pictures just next to Lindys chair.

Then it was time to talk about John. They wanted to know what he died from and if he had been sick long and they wanted to know about what all the kids do and we also spoke about Grandma, Grandpa and John's siblings. We told them that John was very intelligent and that what was so hard for us was that his most known characteristic was also his demise. We said we know we will never know why and we don't question that part of it too much anymore.

Lindy has some new characteristics that have shown up since the transplant but we couldn't confirm to them any that John had. The doctors warned him that he would not be able to hear his new heart for some medical reason or feel it because the nerves were severed in the process (normal) but he affirmed to us he hears AND feels his heart all day long!

I was ready to hear John's heart once again so I first felt on Lindy's chest with his help, where to put my hand. I couldn't locate it so I leaned over and put my ear on his chest and it took about 5-10 seconds but there is was! A perfectly strong beating heart! It fooled me a bit because John's heart rate was always low (his doctors always asked him if he was an athlete - we always laughed our heads off about that, but it happened time and time again) because this heart rate was much faster than John's but I felt a connection anyway. Lindy was wiping his tears and I was wiping mine. I gave him a hug and everyone but Zoe repeated the action; she used the stethoscope and her eyes lit up when she hear her Daddy's heart beating. Lindy had absolutely no qualms about sharing what was once ours with us again.

We told them about John retiring and his mission trips, his substitute teaching, the wedding with all the family visiting, and his retreat just days before he died. All of us agreed that we were both happy we were Christians. The situation meant a lot more knowing we will share the same happy ending John is living out right now.

It really was a comfortable, easy meeting. I think because we had been so busy the past few days, we didn't have a lot of time to think it over or play it out; we were just all enjoying each other's company for the holiday and this was just the next thing to do as a family. I'm so happy we all got to go, it was the perfect time for this to happen.

A List of Suggestions

This was such an important section of this article, it has now become an article by itself. Please click here to learn 14 Ways You Can Help a Grieving Friend or Family Member with the loss of a loved one.

Make It Personal

When John passed away there were friends and family who immediately wanted to donate in his name. We choose two places that were extremely important to him and over $7000 was donated. Please think of your loved ones cherished activities and places that they loved to gift with a donation. John went on two church mission trips to Guatamala and was also a staunch believer in parochial education. Many were helped by the amount of money that was donated. Some friends and family are still making donations today.

So, in a time when you have many decisions to make quickly, choose something that will make you smile and/or keep on giving long after your loved one is gone.

It should go without saying that grief knows no spiritual identity. But for me, my faith, friends and family are the stronghold of what has gotten us this far on our journey. I have read several books and articles on grief but the one that meant the most to me is the book "Heaven is For Real" by Todd Burpo with Lynn Vincent. It is a story about a little boy who had a glimpse into heaven and innocently told of his experiences. Faith means we believe, especially without seeing, but this book confirmed a lot of feelings and hopes for me. It was of great comfort.

There is also a version of the book specifically geared towards children and a conversation guide too.

We are stronger and are able to do more things because of John as evidenced by a recent outing by my oldest daughter. John was a Geocaching fan and did his last one near grounds where he had been on retreat just 3 days before he went in the hospital. My daughter went there on the two-year anniversary, found the cache, wrote on the note near his name and added an extra note. This was very comforting to her and it was a beautiful sunny day in peaceful surroundings.

We also feel strong about the presence of cardinal birds in our backyard. John was a St. Louis Cardinal fan. We had one of those Beanie Babies sitting on his desk for years. I gave it to his mom as a keepsake, since many of us in the family are nature lovers. After that, many extended family members started seeing cardinals in their yards. To this day, we know that when we hear one singing or see one swooping across the yard, it is a reminder of John.

In the second half of this year, I have had some new challenges presented to me. While John and I always had perfect balance in raising our children, that balance is gone and there is a teenager in the house! It seems that there is never enough time to do everything the way it should be done.

Another thing that hit me blind-sided was the Olympics. We were big volleyball fans and on the second day of the London Olympics when I started to watch volleyball, I was a slobbery mess remembering the two times we watched Olympic volleyball in Los Angeles and Atlanta. Here it was two-and-half years later and I was brought to tears by good memories. My friend Patty sent me this comment: "may your heart continue to heal each day with the joy that the Olympics brings to you and may you feel only happiness as you remember all of your fabulous memories with your forever Olympic partner." The right words at the right time helped me get my focus back.

Things I have Learned to Do and Feel Much Accomplished

In the Yard: trim tree branches, manage the garden, aerate the compost pile, mow the yard, backwash the pool, and maintain the pool (this is a big one).

In the Garage: learn what some of the tools are, organize the garage, give away things I do not need, have a shed built to store equipment.

For our Household: manage our finances, manage and understand our investments, get better at technology related issues, renew utility companies, haggle with credit card companies, banking, and learn new computer skills.

In My Life: learned when to say yes and when to say no, learned to ask for help, learned to deal with things as they come at you, learned that I miss my partner very badly and miss being married a lot this year.

At Work (I work part-time): learned that if I can't make it in that day, it will be OK and I can always make it up; learned that people can be very kind and understanding, learned that you have to absolutely love what you do to keep doing it after a loss such as mine.

For my Family: am still learning how to make decisions like a dad because I will never be the dad, learning to have more patience and understanding, learned to remember that my kids have the same feelings that I do, I'm not the only one hurting.

A New Car and Some Sad News

And the beat goes on.....I just spoke with John's heart recipient. He is alive, well, and still as grateful as ever. I have made it a practice to call Lindy on Feb. 16, two days after John passed away because that is the day Lindy actually received John's heart. Since four organs were donated, it was extremely complicated to gather and coordinate four separate transplant teams so it took two days. (As mentioned before, that was a very stressful few days.) So as I exclaimed to Lindy, "It's our anniversary" he replied, "it sure is, I'm three years old today!" What a wonderful giving statement Lindy gave to me and my family.

As I posted this story on Facebook, I reminded my friends that even though it's been three years since John died, that doesn't mean a damn thing. It feels like yesterday and if you've been through it you understand that statement 100%. If you haven't, you are blessed; but you should reach out to someone you know who has lost a loved one with a message, a phone call, a visit, or any type of communication. It will mean the world to them.

Our family had a tough time at the recent three year anniversary. As time goes by it does get easier, but the composition of missing a loved one is ever changing. Since I still have two children at home, they tend to hit milestones or just phases where I remember how this was handling with my older children and now it's unfamiliar territory or just plain crappy that I don't have a partner to share it with.

New Driver

When my son turned 15 and was ready to get his drivers permit, it was up to me to teach him how to drive. Previously, my husband taught the three older children but it was me left to teach a teenage boy to drive. Did you know that insurance company estimates say that 100% of 16-year old boy drivers get in some sort of wreck their first year of driving? We made it 11 months, so pretty good!

Insides Matching Outsides

It is still difficult to go to weddings without a partner and for sure attending a funeral is not a simple task. I heard a very good saying the other day - I wish my insides matched my outsides. IT IS SO TRUE! At this point, most everyone unfamiliar with these feelings sees you participating in daily events and circumstances and therefore thinks "Oh, she's doing so good." But the truth is we harbor deep feelings that are not easy to share because we think people are thinking this way.

Fortunately, I have wonderful friends and family that I can call when I get to this point, but to be honest, sometimes I just don't call because I think they've had enough of me.

Awesome Facebook Page

For those widows reading this...I found a very Christian based Facebook page called The Widows Might. It's worth checking out.

Buying A New Car (another first, they don't really stop)

I bought a car, by myself with a little coaching from my brother-in-laws, but did it alone and felt so good with the results. If you have to do this, here are my tips:

***Do not rush yourself. I started this process one year before I actually bought the car. I went to the dealer, asked to test drive a few models and explained I wasn't ready. I frankly told them not to pester me that I would come back when I were ready and you know what? They didn't! That is why I returned to their dealership.

***If you have a dealer you have bought from before, try and go to that dealer. You are already an established customer and will get respect because of that.

***If you have a preferred salesman, ask for them. If you don't like your salesman after the initial meeting, ask the manager for another one.

***Do your homework on how you are going to pay for the car. Will you finance it? Will you buy it outright? Talk to your bank and get an interest rate before you go to the finance department at the dealership. Often times the dealer will match the rate you bring to them.

***Say goodbye to your old car if you are trading it in that day. This was the hardest part for me. As the salesman was wishing me congratulations and asking if I was happy with the new vehicle, all I could do was nod because I was starring at my old car ready to burst into tears. This was the car that had 11 years of memories of our family trips, emergency room runs, vacations, singing and laughing, friends and celebrations and I felt like I was betraying the car. It was putting those memories into an envelope not to be opened again; letting go of those attached moments that I knew would be gone driving off the lot. I talked to another widow friend of mine and she went through a similar happening except it was on the showroom floor. She was standing there crying and her salesman assured her she had done a good job, by herself, and she should feel good about it. Nice guy in my opinion.

***Read the manual! The car I bought has a cheat sheet manual about 8-10 pages long. Good thing because I put the emergency brake on and when I went to release it, the hood popped open! Get to know your car because there may not be anyone else around when you have a problem.

*Consider purchasing Roadside Assistance and an Extended Warranty. We have used both of these items on the cars our college-age kids had and now since there is no husband to call when you get a flat or have another more serious problem, you will need help from someone.

The Phone Call I Never Wanted to Receive

In early fall, John's heart recipients wife called me to say Lindy had passed away. He succumbed to an infection that he could not shake and passed from this earthly life. We were both sobbing on the phone and so many thoughts were going through my head. I knew this day would come and I had semi-prepared myself for it, but when it did come, it was like we suffered through John's death one more time. One of my friends that has been a rock for me came rushing over and just sat with me and listened, we ate dinner, and it was nice to be with her. It was very difficult to tell my children, my mother-in-law and John's siblings but we all knew Lindy had three-and-a-half good years with his family and friends and what a gift that was!

I have had so many wonderful blessings poured upon me, I hope to be able to pay them forward in the future. Our story is just one way to share - so someone else is comforted like I have been by hands and hearts along this journey.