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.

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.

New Beginnings......and Some Age Old Questions, too.

As most of you have heard by now, David left the company he had worked with for 8 years to take a position as the Director of Development and Community Relations with the Salvation Army in Knoxville. This ended his way of life of the last 15 or so years-the life of a traveling salesman. On June 5, he started working 8 am-4:30 pm and, for the most part, gets to come home to me every night. (No sarcasm please! J) To say that we are beyond thrilled is an understatement. Travel takes a toll on a healthy person, so it is particularly challenging for someone with a chronic illness like diabetes. He has managed incredibly well over the years, but it is very difficult to keep tight control over your blood sugar in a hotel room alone at night with no one around to recognize a low blood sugar that can kill you. Needless to say, I am relieved that I will no longer have to worry when he doesn’t answer the phone in the morning, and I am so grateful that he has been given an opportunity to serve this community with a great organization.

Another life changing event was the death of our 2 miniature schnauzers, Hank and Thumper. The boys had been with us 14 ½ and 12 ½ years, respectively. Hank just became ill about 4 months ago and Thumper shortly after that. As is often said, the right thing to do is rarely the easiest, but very little can prepare you for the time when you have to say goodbye to the unconditional love of one dog, let alone two. Thumper had not lived without Hank since he was 9 weeks old. That attachment was so strong that we knew Thumper would have spent whatever time he had left both ill and grieving for his Hank, so we did the right thing, I think, and made sure that they were together forever.

David had applied for hundreds of job and gotten very few interviews, probably a combination of age coupled with the poor job market. When this job listing appeared, he was hesitant to even apply, as he really was not qualified based on their job description. However, as I have said through the whole process, all they can do is throw your resume out......it never hurts to apply. When he received the call asking for an interview, we were flabbergasted. So many resumes sent in with no responses for jobs that looked like the “perfect” job on paper, and the Salvation Army wanted to talk? At this point, David was jumping on any opportunity for an interview, as we felt certain that his current job would be drastically changed at the first of July.

After lots of research about the organization, interview day came. After a 2 hour long interview, he called and told me, “Wow, that might be the best interview I have ever had”. He came home, sent thank you emails to all of the participants and received a reply an hour later that said, “...we will be in touch soon about a second interview”. I think that was the first point at which either one of us gave any serious consideration that this job might be a real possibility.

The second interview took some time to schedule. The Salvation Army willingly waited 3 weeks to get David back in for the second interview with members of their Advisory Board. During that time, David began to research the organization and their mission. After another 1 ½ long interview on a Wednesday, he was told they would make a decision within 3-4 days. He headed off to Alabama for a food show on Monday......no call. He told me on Monday evening that he felt very comfortable that he would have heard if they were going to offer the position by then, but he did comment, “You know, at this point, I think I would have to consider a job offer from the Salvation Army as divine intervention, as we both know I am not qualified and it is crazy that I even got an interview in the first place.” Tuesday came and went.....still no call. On Tuesday evening, at dinner with his boss, he was told that on July 1, he would still be expected to do the same amount of traveling and sell the same dollar amount but his salary would be cut by over 40%. As you can well imagine, Tuesday night was a sleepless night for both of us, not over the money as much as the knowledge that he simply could not continue to travel this way and maintain his health and my sanity, especially for so little pay. On Wednesday, he finished up in Alabama and started home. Around 6 pm, he received a call from Major Villafuerte, the commander of the Knoxville Division of the Salvation Army, during which he was offered the position. He called me a few minutes later in tears to tell me the news.

Those of you who know me well realize how much I struggle with the role that God plays in our daily lives. While I am not suggesting that He is not with us and concerned about us, I really struggle with the idea that He is in complete control of every aspect of what happens to us. After all, if He “is control”, then why in the world were we given the free will to make choices? Do we just have the illusion of free will and He controls all the choices we make, like a puppet master? Should we ask for guidance on jobs, where to go to school or who to marry-does God really care about any of that? Is David’s new job a product of “divine intervention”? And furthermore, if He really is in control of everything that happens, then does that mean God killed my daughter? Does that mean God caused David to have diabetes or caused his horrible childhood? Why would I want to serve a God that could possibly be that cruel? Furthermore, why do we give God both blame and credit all the time? If there is a God who is inherently good then why don’t we accept that there are evil forces (you can call them Satan or use whatever name you choose) at work on this earth as well? I wrestle with these questions on a daily basis, and I suspect most of you do as well, whether you are willing to admit it or not.

I have come to the conclusion that having these questions is OK. As a matter of fact, I think questioning is part of what God expects of us in our relationship with Him. Blind obedience to some unseen force is not a relationship. Asking God why things happen the way they do, where He was and why He didn't do something to stop tragedy doesn’t diminish my faith or His power-it just serves to remind me that we live in an imperfect world, full of imperfect people who make really horrendous decisions every day. Those decisions past, present and future impact those that make them, and sometimes innocent bystanders and the world at large, either immediately or somewhere down the line. A mature, healthy relationship with our creator gives us the space and the freedom to wrestle with the hard stuff. Prayers and conversations with Him allow us to know Him more, to know His heart more, and to become more like Him every day. Through Bible study and community with others who are asking these same questions, Holy Spirit gently nudges me toward a more complete relationship with Christ. 

Ultimately, some answers won't be found on this side of eternity. However, it is up to me to nurture my relationship with God so that if there is an answer to whatever questions I might have, I am listening closely enough to hear it.