Grieving for the Long Haul

One of the last selfies of Mandy

We have many reasons to be joyful in 2019. Matthew is happily married to his sweet Caroline, living his dream as a husband, father and an aerospace engineer, and our precious granddaughter, Emmaline, is PERFECT. Sometimes, however, joy and sadness mingle to create a strange and unsettling place in which the heart and mind reside, especially on significant days like today, the 13^th year we’ve lived without our precious Mandy.

As you well know, being a parent is a 24-7 job, even when your children are grown and on their own. We might not talk to them daily, but we wonder many times a day if they’re OK, if their work day has been good, if they are taking care of themselves…..you get the idea. In much the same way, like those of you with living children/grandchildren, we think of Matthew, Caroline, Emmaline AND Mandy every day, even after 13 years. The death of a child doesn't stop us from being their parents; we've just had to learn to parent a memory instead of a living, breathing person.

Burying a child of any age changes you to the core. We're much different people than we were before. Some of the changes are visible; some are so deep that we have a hard time understanding or accepting them in ourselves.

The physical toll of grief is intense. It zaps all your energy; your body and mind are working so hard to process all the emotions that go through your head every minute of every day. David's diabetes was out of control for so long after Mandy died, and I've been tested for multiple autoimmune disorders....who knew that losing a child makes you more susceptible to so many physical ailments? And let’s not go into the PTSD associated with traumatic loss……. I still can’t function if Matthew or David doesn’t return a call or text within about 15 minutes. My brain immediately assumes the worst and I am in FULL panic mode until I receive a call or text.

Our ability to think and reason was greatly diminished especially in those first years and still is at certain times of year surrounding special days. I thought I was going crazy when I first went to work at UT in 2008 because I couldn't remember how to do the simplest of office tasks. We made poor financial and personal decisions that were so out of character because we just couldn't think straight. We had to rely on the advice/guidance of others who were well meaning but didn't always have the answers that were best for us. Even now, we know that our decisions are still affected by the grief that is now woven into the very fabric of our being. I still struggle not to buy everything I see for Matthew, Caroline and Emmaline, and even David, because what if I don’t have tomorrow to do so?

After the initial couple of years of just going through the motions of life and trying our best to stay focused on Matthew, we've become more keenly aware of the struggles of others, especially other grieving parents. We know there is nothing we can say or do to make it ok, and that each circumstance is different, but we still try to be there for them because we KNOW.

We are more empathetic to suffering of any kind, and yet have zero patience with trivialities. For instance, I hate that UT lost and people were disappointed on Saturday, but the sun came up on Sunday for most everyone, didn’t it? Life is far too short to have your happiness dictated by the outcome of a ballgame.

We are keenly aware that nothing is promised and that every day might be your last, so you had better make it count. Forgiveness and grace flow much more freely when you are afraid there won't be a second chance.

We know that no matter how hard you try, some days the grief is simply unbearable and just getting through those days is a victory. We also now know that a better day will come....it may not be tomorrow, but it will come.

We've learned that there are some amazing people in the world that will do anything to put a smile on your face, and will listen to us tell stories they've heard a million times before and still laugh and cry with us, every single time.

We know that eventually, for every day when all you can do is cry and remember the end, there will be a day when you can laugh and remember their life and all the joy they brought to our lives. How different life would have been for our family had we not had 18 whole years of the craziness and joy that was life with Mandy!

Our faith had to be taken apart and completely reconstructed; "out of order" death has a way of really messing with all the things you thought you believed. I tell people that God and I have a very uneasy relationship now, but I know without a doubt that he is OK with that. He's shown me over and over that he is big enough to take all of my anger, my questions and my doubt and continue to love me unconditionally. I do not for one minute believe that the God of love, mercy and grace had a hand in Mandy's death, but I do believe that HIS same love, mercy and grace is my absolute assurance that I will see her again.

We've learned that there are many unexpected landmines that a family encounters when a child dies. Husbands, wives and siblings all grieve in very different ways, and that can create hard feeling and struggles along the way. Parents are changed, and the remaining siblings have to adjust to living with parents they don’t even recognize. Matthew lost his greatest protector and his first best friend. We've learned that tolerance, respect and patience are necessary, albeit difficult, traits that we must find in ourselves to give our family (and ourselves) the grace and space to grieve in the best way for themselves rather than the way we think is best.

I've just touched the tip of the iceberg of the ways we've changed. Some are for the better; some not so much. Regardless, here we are, on the 13th anniversary of Mandy's death, still wondering who she'd be today. My wish is that we can remember her with smiles and laughter through a few tears. We know, without a doubt, that our lives were changed for the better by the privilege of being her parents, and many other lives were changed for the better through knowing her, loving her, and the lasting gifts she left as an organ and tissue donor. Today, as always, we’ll try our best to make her as proud of us as we are of her.

Words Matter

Words have the ability to both hurt and heal. All of us know that, and yet we find ourselves saying hurtful things that we don't mean, often to the very people we love the most. We had a month long challenge at work last week,  and each of us choose something we wanted to improve on in our own lives. My challenge was not to "complain" at work or at home, for the entire month. I forced myself to think through everything that I wanted to say and decide both whether or not to say it out loud, and also whether or not it was kind, unkind, or even necessary. To say it was an eye-opening experience is quite the understatement. While I NEVER intend to be hurtful, I realized during the course of the challenge that my directness often comes across as complaining and can be perceived as unkind by the recipient if I'm not extremely careful. I learned all over again that "words matter", especially in the way that they are delivered, both in good ways and in bad.

After successfully finishing this challenge on Thursday, I was reminded again on Saturday that words matter for a very long time, albeit in a different way. While re-arranging my curio cabinet, I found a letter sent to us a couple of weeks after Mandy's death. I'd like to share it with you, not just because of the kind and wonderful things said about Mandy, but as a reminder of the lasting power of our words and actions. This lady did not have to sit down and pen this lovely, handwritten letter to us, yet she took the time to do so, allowing us a small glimpse into a side of Mandy's life and personality that we had NO way of knowing otherwise. When you encounter those who are grieving or struggling in some way, take the time to send them a note on FB, a quick text, or a card. Better yet, go somewhere and sit with them; listen to their words and really hear them for a change instead of trying to give them answers or guidance. Anything you can do to let people know they are loved and that someone cares for them is valuable; one small gesture could give them something to smile about during long and difficult days. That’s just a small part of what being Jesus is all about but it's an extremely important one. As for the words below, I know they most certainly made us smile again on Saturday (and yes, maybe shed a tear or two as well.)

September 17, 2006

Dear Mr. and Mrs. Harrell,

I was unable to attend Mandy's memorial service, but I want very much to write to you and tell you how very, very sorry I am for your tragic loss. 

I sat next to Mandy in the St. John's Choir. I've been a paid soloist there for many years now, and I have to tell you that her addition to the choir was nothing short of pure joy. She could sightread ANYTHING-I was always marveling at her tremendous confidence and musicality. Sitting next to her was such a great pleasure. 

And truthfully, we just adored her. We always wanted to see her latest pedicure and the latest pair of adorable shoes.....I think I was always touched at how she would talk to all the old, middle-aged women like we were just her friends-she never us feel like we were "old fogeys" or boring, silly old ladies. She was charming and sweet with a generous, kindly nature.  

That last Sunday, we were standing together in the back of the church, waiting for the service to start and the choir to process up to the choir stalls at the front. I noticed her new haircut that she'd gotten since I had last seen her. I whispered to her, "Mandy, your new haircut makes you look like you stepped out of a Renaissance painting-you look like a Renaissance angel." She just smiled-she was used to getting compliments and she never let them go to her head.

She is, of course, a real angel now- and more gloriously alive than any of us here. SO many people you have never met have cried with you these past heartwrenching days. We pray for your comfort through God's generous grace and love, and hope that the knowledge that Mandy touched the lives of many people in her short, sweet life will give you strength.

I picture her now, with angels resplendent in brilliant robes, gathered in heavenly choirs singing glorious praises to the Lord. And, as the chorus ends and they move with grace away from the light filled church, they gather around our little Mandy and ask to see her new golden sandals and her pretty pedicure. 

What a blessing she was to us. What a blessing she is to them now. God bless you and all of your family. 


PRICELESS-all because this lovely woman took a few minutes out of her busy day to minister to us through her memories of our precious Mandy. Be Jesus to those around you today in whatever way you can, and never think that there is nothing you can do, because even words matter.


P.S. Thank you for all of the kindness shown toward David and me as he leaves his position as Worship Leader at CBCFC. We have felt such love and gratitude in every word spoken-whether in person or via the many lovely notes we've received. Rest assured that each and every one those words will be carried in our hearts as we move to this next chapter of life. As I said above, words matter.  

What I Understand

Tuesday, September 5, marked 11 years since our precious Mandy died. Words can't begin to convey how much we miss her; it's a constant hole in our hearts that I suppose will never fully close. If we're honest, I guess we don't really want it to, because that might mean we've left her behind even though we know that is not the case. We appreciate how you indulge us (that means me) as we blow your newsfeed up with picture after picture....I know you've seen them all a million times, but they are all we have left until we see her again in eternity.

The moment you conceive a child, a part of your heart and soul belongs to that child FOREVER. Whether they never live a day outside of the womb or live until we are old and gray, having them die before us is perhaps the most painful thing a mother and father can ever face. Having experienced this, I feel obligated to walk with other hurting mommas that cross my path. I am not a counselor, and I can't take away the hurt, but I am willing to share the journey, even though it sometimes means I keep reliving my own. Certainly, I can't understand what it is like to watch your child die of cancer, or be killed in cold blood, or die before you ever get to hold them, or kill themselves via suicide or drugs, or even what it's like when YOUR child dies in a freak, tragic accident. All those situations are completely unique, but they all leave a momma spending the rest of her earthly existence missing a piece of her heart and soul.

Here are some other things I DO understand:

I understand that even when there is NOTHING you could possibly have done, you'll always feel deep down in your heart that your child's death is somehow your fault. 

I understand that you'll go over every single minute of your child's life and beat yourself up over and over for each time you weren't the kind of parent you wanted to be.

I understand that if there was an illness or accident involved, you'll wonder if you had just tried this treatment or asked the doctor to do this or asked them not to do that, maybe your child would still be alive.

I understand that you'll always believe that if you'd just prayed a little harder, God would have spared your child.

I understand that after one child dies, you'll constantly feel that you are failing your remaining children because you can't be the mom they want or need anymore.

I understand that you want to "fix it" for your other children or for your spouse and you never can or never will but you still keep trying. 

I understand that you'll feel as though you are failing your spouse, your other family members and your friends because you will NEVER be the person they once knew.

After 11 years, here are some other things I understand:

I understand that one day, you'll wake up and your child's death won't be the first conscious thought of the day. 

I understand that one day, you'll make it all the way to lunch, then dinner, then maybe a whole week without crying and know that it doesn't mean you've left your child behind or forgotten them.

I understand that one day, you'll laugh without feeling guilty because you "shouldn't" laugh after your child died.

I understand that one day, you'll be able to smile and not cry when you hear stories you've never heard about your child. 

I understand that one day, you'll be able to reach out to another mom who is grieving, not without crying, but with strength, grace and dignity to show them that they, too, will eventually be able to understand all these things as well. 

Jesus calls us to be His hands and feet to a world full of hurt and pain in whatever way we can. If I can do that by sharing the journey with another momma who has to walk this road for reasons neither of us will ever understand, I've given meaning to Mandy's death in ways that I could have never imagined. 

A Horrible Mess

I had someone tell me yesterday that in the first couple of years after Mandy died, I was a “horrible mess”. To be perfectly honest, this hurt my feelings terribly. However, as I have mulled this statement over, I’ve come to some conclusions I’d like to share and to have your thoughts on, too.

First, let me say that this came from someone who I consider a dear, precious friend, a person who has never been anything other than supportive of me, David and Matthew. We had not been friends for very long before Mandy died, so she was thrown into the fire, so to speak, before she really had a chance to fully know the “before Mandy died” Betsy. She is a bit older than me, and her friendship has been constant and unwavering for the last 11 or so years. She is one of the finest, wisest Christian women I’ve ever met. I value her opinion, which is why her words initially hurt so much.

As I’ve pondered the idea that I was (and some days still am) a “horrible mess”, it’s made me look at our society’s response to grief with fresh eyes. Quite frankly, we seem incapable, both individually and collectively, to effectively minister to those who grieve.  We are completely unable (or perhaps unwilling) to accept that grief, even though it evolves and softens over time, lasts for as long as we live. I just read a pastor’s blog in which he talks of people he recently observed who were so impatient that they could not stop just long enough for a funeral procession to pass, instead cutting into the line of cars and honking, etc. I see this as a metaphor for the much larger issue of expecting people’s grief to have a brief, set time frame, after which point, their lives return to “normal”. For most of us, we attend the funeral, say a few words of condolence to the remaining family, and get in our cars to go have dinner. For the family and friends of the deceased, “normal” is completely different than what is was just a short while ago. Normal looks, sounds and will forever be nothing like it was before. Why is it that we have people coming to us less than a year after the tragic loss of child telling us that we need to “get over it” and that “people don't want to deal with you” if you continue to grieve? Really? Are we truly so emotionally inept and shallow that we cannot allow people who are supposed to be our friends the time and space needed to at least get their feet back under them after a major loss? Being a "horrible mess" is exactly what a person who has lost someone they love deeply should be, and it is wrong to expect otherwise for a very long time.

 Grief is hard work, and being a friend to someone who is grieving is extremely difficult and emotionally draining.....it's not for the faint of heart. The griever’s behavior is unpredictable at best and downright bizarre at its worst, sometimes swinging wildly from moment to moment. However, if you were willing to do the hard work of friendship before that person experienced loss, why wouldn't you be willing to do the same when grief comes, as it inevitably will? Be willing to stand in that gap and be the buffer between them and the world, the protector from those who aren’t willing to understand, the advocate when they just can’t make another decision. Be the person who is there to let them wallow in self-pity for a bit, but also there to drag them out the bed and make them get dressed and go out for a few hours, just so they don’t forget how it feels to live. Be the person who patiently listens to the sometimes crazy rantings of a grief-stricken person for hours on end. Be the person who doesn’t put a time frame on their grief and understands that even though they are a “horrible mess”, and are forever changed, they are still worthy of your friendship and love. Reassure them that you will forever be a part of their “new normal” even if that means your place in their lives has evolved into something new as well. 

That I was a horrible mess should have come as a surprise to no one, yet it did to even the kindest and most compassionate of my friends. This speaks volumes about how we, both personally and as a society, are so poorly prepared to cope with those who grieve. I am thankful for my dear friend and her perspective, and I want you to hear the rest of the story, the really important, redeeming part of our conversation. She went on to say to me, “I had experienced loss in my own life, of course, yet I had never been so close to such unspeakable tragedy. Walking these last 10 years with you has taught me so much......while I still cannot empathize as someone who has lived it, walking with you has given me the insight to be more patient, sympathetic and understanding of others who’ve lost a child in a way that I could never have been otherwise. I’ve been grateful and honored to have shared this experience with you. ” I was so humbled by her words, because I wouldn't have ever considered the possibility that my grief could be a learning experience for anyone except me. 

If you live long enough, you will lose someone you love; we all know that’s inevitable. Those who have not yet experienced great loss can have no real concept of the sorrow, the pain, sometimes the tragedy of the situation. Be the kind of friend now you want walking alongside you when that day comes.

Thanks for Giving

Regrets

I never saw Mandy after she died......I just couldn't do it. When we left the hospital, after she was officially declared brain dead, she was still hooked up to machines that were keeping her body alive so that her organs could be donated. I never went back to the hospital or saw her body again after the organ and tissue recovery, even at the funeral home. My heart knew that she was no longer in that shell. Even though the days after the accident are forever etched in my memory, I guess I somehow thought that if I didn't see her cold, lifeless and empty, it would be so much easier to remember her laughing, smiling, healthy and whole.  Some days, that is true; on others, especially leading up to the anniversary of her death, not so much. There is a raw physical pain associated with the need to touch her again; if I allow myself to go there, I can literally feel her head on the exact spot it always rested on my chest when we hugged. I so desperately want to believe in Heaven and the promise of a reunion (and on most days, I do believe that), but I will always feel a deep regret that I didn’t hold her and say goodbye just one more time.

To borrow a phrase from another blogger whose words always touch me, Chris Jones (Mitchell’s Journey on FB), I have worked hard to “turn my regrets into resolve”, attempting in word and action to give Mandy's death a purpose and to honor her legacy in all that I say and do while taking care of my family that still lives. I have promoted organ donation, created grief support groups and given scholarships, all very good things. However, I have failed miserably in my personal relationships at times, unknowingly and most certainly unintentionally. It’s a delicate balance to honor the person who died while still caring for the family that lives.......one that is fraught with opportunities to create permanent hard feelings and rifts that you don’t even realize have happened until the damage is done. Looking back, I can easily see these instances and also see how they have affected and continue to affect those I love, and I deeply regret hurting anyone. I am sure that for many years into the future hard feelings might come to light. I continue to discover ways that I have hurt those I love the most by dwelling on Mandy’s absence at opposed to living in the present joy of the day or event. However unintentional, it has been hurtful to all and I am profoundly sorry. I don’t think I am alone in this behavior; I suspect it is very common for someone who deeply grieves a lost loved one to be fixated on their absence, failing to recognize the pain that causes for those still present, but I honestly don’t know how in the world such behavior is to be avoided. I hear similar stories over and over from others who are grieving a significant loss, and if you have not been in that place, you simply cannot understand, nor do we want you to understand. Another regret to put in the books, but this one comes with a determined resolve to constantly be mindful of living in the moment and to cherish each day as it comes with those we love.

We found out that Mandy’s lung recipient passed away about 2 months ago....Dolores’ husband called me to tell me the news. She was a dear, kind lady who struggled mightily to come to grips with the idea that we lost our 18 year old and she benefited from that loss. I immediately asked Tennessee Donor Services for a “welfare check” on the heart, liver and kidney recipients with whom we have never had any contact, something they are allowed to do for a donor family from time to time. Unfortunately, we were told that Mandy’s heart recipient passed away almost 2 years ago. He would have been 17-18 when he died, as the transplant took place when he was 11. I grieve for both of these families as well as for myself all over again. I so desperately wish I gotten to hear her heart beat one more time, but I certainly respect their wishes not to meet us. Now they grieve a teenager just as we do, and we will be forever connected in both our grief and our children’s lives, even though we will likely never meet. As a side note here, if you are a transplant recipient reading this, please write to your donor family, even if it's just a short note that says thank you and allows for no other interaction. It will mean so much to them, even if they are not able to respond to you through their grief. Thankfully, 4 of Mandy’s 6 recipients are still alive and doing well and hopefully one day, we will get to meet the 2 we have not yet met. While I deeply regret never knowing the young man who received her heart, I continue to find comfort in the additional years he had with his family, and I hope that he and Mandy had a joyful meeting in Heaven when he arrived.

Our society gives people such little space to grieve......a few weeks and the griever is supposed to be “over it” and return to “normal”, even though there is no more “normal” for our families because our loved one is gone forever. I have 2 dear friends that I have met through my grief group who are coming up on death anniversaries, just as we are. It’s the last day we want to commemorate and the one day that we simply can’t pretend doesn’t exist in our world. It’s the day that we now use to mark time, because major life events either happened “before” Mandy died or “after” Mandy died. Time stands still on that one day each year, and we replay their deaths over and over, wondering how or if we could have changed the outcome if we had made different choices or if the person who died had made different choices. Most of the time, of course, the answer is “no” and we do mostly come to accept that this is true, but we’ll still always wonder sometimes...at least I will. Our minds dredge up every harsh word that was ever said, every time we wish we had given them something they wanted, every time we failed as a parent (spouse, sibling, child-you get the idea), every missed opportunity to play instead of clean house, to sit and talk instead of spending time on the computer or with a video game, the list goes on. Did we make the correct choices about treatment when they were ill or injured, should we have insisted the doctors do something differently or something more? For me, why didn’t I just say NO, you can’t go? What if, what if, what if, what if........these things play over and over in our heads and drown out, at least for that brief time every year, the carefully crafted and artfully presented facade that we show the world. The regrets can be overwhelming, even in situations in which we know we did our best, as most of us do. Those who grieve have developed various strategies for coping with these times. and I always tell people that as long as their coping strategies don’t hurt them or others, it’s OK. My strategy has always been to share Mandy’s life with the world through the 6 people who received her organs, through up to 50 others who likely received a tissue donation from her (ligaments, bones, skin), through the scholarships given to several very deserving young people in her memory, and to share my regrets, my pain, and my grief with my little grief group and through this blog, all while continuing to love and care for my husband, son and daughter-in-law as best I can. I don't want anyone to feel alone and misunderstood in their grief. Thank you again for allowing me the privilege to walk with you as you grieve, and hopefully we can continue to work toward healing and restoration together.

Surviving the Holidays

Holidays are hard. Christmas music starts playing in stores the day after Halloween if not before. We are reminded constantly that Thanksgiving and Christmas are times for parties and celebrations. We are bombarded with the message that the only "right" way to celebrate the holidays is with a houseful of family and friends and that everyone comes home for the holidays because they want to.

But what if that cozy scenario is not your reality? What if your family is small or doesn't live close by?  What if you are estranged from what family you do have? What if you don't have the money to buy your children the "must have" gift of the season or possibly any gifts at all? What if you or a loved one is ill, physically or mentally? What if you've just gotten divorced? What if it's your first....or ninth Christmas without someone who left this world too soon?

I understand and respect the fact that people LOVE Christmas. I love Christmas, too. I love it because it brings out the best in people, most of the time. I love it because we celebrate Jesus, the one whom I strive to be more like every single day. I love it because the resurrection and the promise of eternity begins with His birth.

I don't love what we've made it.......spending too much money on things we don't need rather than ministering to the least of these. I don't love the fact that we have somehow made those who aren't "jolly" during the holidays to feel as though there is something wrong with them.

Whatever the reason you struggle during the holidays, I want you to know that it's OK. I hear you. I acknowledge and respect your pain. I want you to know that you are not alone, and most especially, I want to remind everyone else that you are important, too.

So, this year, while you are busy running from pillar to post, buying presents people don't need, decorating the perfect tree, and figuring out the next escapade of your Elf on the Shelf, remember those who are unable to "celebrate" the Holidays because they are too busy just trying to survive until they are over.