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.

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.

Unfinished Business

As we approach the 8^th anniversary of Mandy’s death (which is unbelievable to me), I have been thinking a lot about why grieving parents seem to struggle so much to move forward. Or, more accurately I suppose, why I have struggled so much to move forward since Mandy's death. I have come to the conclusion that the death of a child not only creates a void that can never be filled by anything or anyone else, it also causes a parent to forever have this sense of unfinished business. 

When our children don't outlive us, the circle of life has been violated. After all, aren’t parents supposed to die first? We hope and expect our children to grow up to be productive members of society and to make a difference in this world, so I think anytime that natural order is interrupted, it changes us in ways we could have never fathomed. We have to grieve for so many things.

• We grieve the loss of Mandy's physical presence. No more hugs, no more "I love you's", no more laundry (yes, we even grieve that!)
• We grieve for Matthew, who not only lost a sibling but also a close friend and confidant.
• We grieve every milestone Mandy didn't reach, especially as we watch Matthew and her friends reach them.While our pride is not diminished in Matthew, our hearts ache because Mandy is not with our family to share the joy we all feel in those accomplishments.
• We grieve the loss of our hopes and dreams that will never be fulfilled for Mandy.
• We grieve the son in law we will never have.
• We grieve the grandchildren that we will never have.
• We grieve for the grandchildren we will have because they will never know "Aunt Mandy".
• We grieve the sudden shift in the dynamics within our family unit. Matthew became an only child instead of the baby. We became the parents of an only child instead of 2 children. There was suddenly no longer a need to divide our time between two kids pulling us in two different directions. There was more money because there were now three of us instead of four to feed, clothe and educate.
• We grieve because sometimes, we can’t speak freely about Mandy. In the years since she died, Mandy has become the elephant in the room that no one wants to bring up. There is the constant fear that we have talked too much about Mandy, or maybe not enough. And then there's the group of people around which we can't really talk about Mandy at all because it just upsets them too much and we must respect their feelings.
• We grieve because as much as we would like to be the same, we have been forever changed. We aren't the same parents and it hurts us to know that we have hurt Matthew by being different. I can't be the same wife that David had before Mandy died anymore than he can be the same husband; truly, we are transformed in ways that we don't even realize or understand. It takes time to adjust to new personalities and new dynamics that are constantly changing in the midst of such profound grief.
• We grieve because we don't know how to answer the simple question, "how many children do you have"?
• We grieve everytime we meet someone new and realize that this person doesn't even know Mandy existed.
• We grieve because because we failed to protect Mandy as parents are supposed to do.
• We grieve every single time we failed Mandy, over and over again, because we can’t ever say we are sorry.

The death of a child forces us to close a chapter in our lives that we do not want to close. We fight, claw and scratch to keep from closing it, feeling as though we are somehow abandoning our responsibility to love and nurture Mandy as long as we are alive to do so. We will never stop being Matthew's parents, so why is it that people expect us to stop parenting Mandy, or at least trying to in some way? Continuing to “parent” a dead child looks different for all of us....honoring their memory through scholarships, or cemetery flowers, or little memorials at those special life events at which they should have been present. We become unreasonably attached to their ‘stuff” or their favorite colors or put little stickers on our cars and carry bracelets on our key chains. We build “shrines” in our homes to them, or sometimes instead we take down all their pictures and pack away all their things because we can’t bear to look at them. We become passionate advocates for causes they believed in or causes somehow related to their death. We obsess about whether the flowers still look OK at the cemetery, and why we can't get the grass to grow on their graves. We have to go to the cemetery on special occasions, even though we know they aren’t really there. We will talk to anyone who will listen about them when we know that we safely can, but not utter their name when we sense that it makes you uncomfortable. We hang on to cash register receipts and post it notes with their handwriting on them because we will never see that again. We cherish every memory, story and photograph that someone shares that we have never heard before. We even, sometimes, without meaning to do so, make that child into a "larger than life" human being that is a long way from being the real person that they actually were. We struggle to live in the present sometimes, because the present is simply incomplete without Mandy. Through all this emotion and turmoil, we do our best to move forward, cherishing the time we have with Matthew, Caroline, and each other, celebrating each milestone with them, yet living each day with the overwhelming fear that something will take one of them from us, too.

I wish that David and I could accept and reconcile the thought of no longer being Mandy's parents, but I think that's a quest that will go on for many years to come. This sense of "unfinished business" will likely last a lifetime. It may change and morph along the way but I doubt it will ever completely subside. My only hope is that others whom we love will know and understand that this doesn't in any way diminish our love for them or their importance in our lives in both the present and the future. Our hearts are big enough for everyone, both living and dead.