The Endurance of Grief...

 Like I told you in my last post, I have been plagued by people, well meaning and not so well meaning, in my life, who have told me that I needed to move on and put the past behind me. And I must say that this goes back much farther than Cooper. When I was 14, my Dad died very suddenly and tragically in an airplane crash. I was in the 8th grade, and that Saturday morning, he had dropped me off at school early so that I could hop on a school bus filled with my friends and drive downtown to Astroworld; a special treat for those of us who were in the NJHS. When I was getting out of the car, he stopped me, handed me some extra cash for the day with a big smile and told me to have fun and that he loved me and he would be there to pick me up in the evening. Instead, I was picked up by a family friend  and my older sisters, who told me my Dad was dead on the very short drive back home and the moment I got out, before I ever even made it inside to see my Mom, I was surrounded by adult family friends, many of them telling me that I needed to be strong for my Mom and not cry in front of her - my first introduction to how to handle grief - just swallow it for the good of the family. Okay. Brave face on, I wiped off my tears that were falling already, forced them to stop, and walked in the house to find my Mom. But seeing her, I couldn't help it, I broke apart. I couldn't stop myself from crying. So I let it out and tried to keep it as short as I could. And then I went to my room to call my friends. I decided to surround myself with them. And that helped. They really gave me strength when I needed it and lifted me up when I felt like I was drowning. I also leaned on my siblings. The four of us bonded and became so close during the year after we lost my dad, that I don't know how to describe it. My Mom needed space and time to deal with her own grief and all of us had been told the same thing by so many people; we had to be strong for her, so we had to just keep it together. The one time I went to speak with someone about my grief, my Mom took me to our church, and I will never forget it. In fact, it was so bad that it turned me away from the Episcopal church I had grown up in my entire life and I spent the rest of my high school years attending and participating in a wonderful youth group at a local catholic church where the majority of my friends went to church. Anyway, I sat in the office of this priest, and she told me that I was being selfish by still being so sad about my father. She said that God would be ashamed that I was holding onto my sorrow instead of moving on and I was only doing this to be ugly to my family. Keep in mind that at this time, my Dad had only been gone for less than 6 months. I told her that I thought she was an awful person for telling me something like that and that I had read a few books like, "When Bad Things Happen to Good People" and that the things she was saying seemed completely unlike the loving God I had grown up knowing. A few days after that meeting, my brother and I got a letter from our church saying that we had been removed from our duties as Acolytes and could never Acolyte there again. My church punished me for grieving. Very confusing for a now 15 year old kid, but my friends and siblings and my Uncle Steve continued to be a great support system for me and by the time we got to the one year mark, while it was a difficult day, I felt like I was breathing real air again and when I laughed and smiled it wasn't for show or forced anymore. As more time passed, I missed my dad, of course. I have and will always miss him, but the incessant and constant ache of his loss every single day has not been there. I've had moments of it. Times like Graduations, Prom, my wedding day...moments like that are hard. But it's a difficult moment; an ache in time, not a gaping wound that never heals and is always raw.  And I'll tell you that, because I had been through this great loss in my childhood and survived it pretty well, I felt like I was prepared for the loss that was coming with Cooper. I felt like I knew well the grief cycle and how best to help my kids cope. Child Loss is nothing, NOTHING like losing a parent or a grandparent or an aunt or, as far too many people have tried to empathize with me, a fucking DOG.

When we found out that Cooper was, what we called for a little while, the "Big T," aka Terminal, doctors and social workers and the psychiatry team we had to be evaluated by before Cooper was able to be listed for his transplant all told us that it was totally normal if we had already started the process of grieving for Cooper. In fact, they said we had probably been grieving for him since his birth, even if we didn't know it. I've thought a lot about that since we lost our Boy and I don't think that is true. I mean maybe, in some way, like I said in my old post from 2008, I was grieving the loss of his normal childhood, but honestly, we tried so hard not to focus on that stuff. I mean, everytime we arrived at the hospital, and our old nurses and doctors can attest to this, we arrived with several bags on wheels, so I could roll them behind his stretcher on the way to our room from the ER (We learned fast and early that we couldn't afford to park in the garage for his long as hell hospital admissions, so Kevin or my Mom would load us up and drop us off at the doors of the ER and I would wheel him in with all of our stuff in tow), but the largest bag I brought was always the green toy bag. It was filled with whatever his favorite toys and books were at the time and he always had some sort of cars or plastic "guys" grasped in his little fists, along with his Duckie and Oofie. We turned his hospital room into a magical toy room for him so that it wouldn't be so scary and it would feel more like home. Invariably, he would get new toys while he was inpatient so that we would need to have an extra bag or 2 brought from home when we were packing to leave, in order to get his toyscape of a hospital room repacked for our return home. We did this so that he could still HAVE a childhood, despite the shitty circumstances.  To us, he was just another one of our kids. He got in trouble for being bad - he was a biter, so there were plenty of times he got in trouble. He even got punished in the hospital because I was not about to allow him to be disrespectful to the people who were working so hard to take care of him. If he kicked at or hit one of his nurses, he lost his toys and got put in, what I called, Baby Jail, which was really just the hospital crib with the sides and tops fully pulled up and down. No TV or music on and nothing but him and his thumb for a little while to think about what he did. Once he could talk, he had to apologize for what he had done after his jail time. Maybe I was a terrible person for doing that, but I just couldn't let him turn into a bratty kid, even considering the hand he had been dealt. He very quickly stopped acting up like that and was still and sweet for everything, even when many nurses were digging all over his arms and legs, trying to find a vein for a peripheral IV. He was really something.

I tell you this bit in my grief post to say that, I often get asked if I think it was easier to have had time for the reality of the loss of my child to sink in over time than it would have been if he had died suddenly. I have never really been able to answer this question well.  Although we had known that Cooper's condition was considered terminal since about the time he was 20 months old,  Kevin and I decided together at that point that every single person on the planet is terminal. We are all going to die at some point and none of us knows when that time will be, so we were not going to assume anything. The doctors had no idea whatsoever how much time we were looking at for Cooper, so that meant to us that he was just like everybody else, and at that time, the doctors still had zero clue what exactly was wrong with Cooper, only telling us that he had a "Syndrome" of some sort.  Then when he was finally diagnosed at 3 years old with Mito Disease, his Mito Specialist explained that with how sick he was and with how complicated his condition was, because so many of his body systems were grossly effected by his disease, without a miracle, he likely wouldn't make it to the age of 5. That news was very, very hard for us to hear. Some of the most difficult news we had ever heard at the time, but we felt like we had this linchpin in our pocket because our son was getting his miracle any day now, right? Surely the transplant would be the thing to show them all that he could beat this disease with no treatment and now cure. Cooper would be the miracle. And so no. We didn't grieve his strange and unusual childhood because we had hope. We had so much hope and faith and love and so many dreams for our Boy. How could we grieve for him when he was so happy and silly and full of life? Then when the transplant wasn't quite what we had hoped because his body was just so weakened by his underlying disease already and we came home a bit discouraged with a child in pain and slightly less perky, we still didn't grieve then either. And here is why. Our team of doctors in his palliative care group helped him with the pain and his transplant team coordinated with with our teams here in Houston and Cooper was so happy and revitalized to be home with his kids (He called his siblings "my kids" and "The Kids" and "His kids") that our hope remained as true as ever and we watched him fight battles that doctors said he couldn't possibly overcome, but he did. We didn't grieve because that meant giving up and how could you ever ever give up on your own child? Don't get me wrong. We knew. Kevin and I saw him. We weren't blind. But miracles happen everyday, so why not for him?  Why not for our Beautiful Boy? When we took him into the hospital for that last surgical intervention, we never imagined things would go so wrong so fast. And when our doctors called that final meeting with us to discuss our options and told us our options were to take him home on Hospice or to let him stay in the hospital to die, I mean those aren't even real options. He had been asking to go home, and so that is where we went, but even then, even THEN, we did not give up. So on the very early morning of the day he would die, around 4 am, when things started to go down hill quickly for Cooper, we reacted. We did what you do for a sick child. We held him and kissed him and rocked him and laid with him and held his hand and gasped when he woke up and asked for ice water and gave him ice water and cherished those last words and the last smile and the mumbled I love you that came from his swollen lips and we whispered everything we could ever imagine to say into his ears and prayed and cried and still we hoped and when he finally took his last little breath at 11:10pm that night, it was still just as shocking and jolting of a feeling as finding out that my Dad had died in a plane crash. Even though I had known for years, even though I had known for months and weeks and days and hours and minutes and seconds that he was going to die, when my baby left this earth and flew to Heaven the pain that tore through my chest and my heart removed such a vital part of my heart and my soul that it left a permanent empty place there that cannot be filled with anything other than him. Cooper is the vital piece of me that left and is the only piece of me that will fit back in that space and that space doesn't have clean edges. They try to heal over a little but they bleed so easily, even now, 9.5 years later.

Everyone knows about early grief. Those first shocking and numb days where you cry so much your eyes are always swollen and blurry and people gather at your house and bring you too much food. To this day, I cannot eat beef stroganoff because we had it show up so prolifically after we lost my Dad. And after Cooper, it was Chicken Divan, which I had never heard of before then and will never ever sic on a poor unsuspecting family needing a meal nor will I myself partake of it again. Once the funeral is over and your extended family has left to go back to their homes and their unwrecked lives, you are left to pick up the pieces. I have told many people this and it is 100% true that if Cooper had been my only child and I had lost him, I do not think that I would have survived the loss. The only thing that got me moving each day was my other children. I had to keep being their Mom. They were hurting so badly as well and needed me to show them that we could do this. They also needed to know that it was okay to be sad and cry. I didn't hide my sadness from my kids. I knew how incredibly fucked up the ideas of those well meaning adults of my adolescents had been and so I let my kids know that it was completely normal to feel sad and to miss their brother, but that it was also okay to laugh or smile or be happy. Kevin and I were blessed to have some incredible people surrounding us leading up to Cooper's death. The Child Life Staff at CMHH provided us and our children with some amazing resources and a headstart on what to expect in the early stages of their grief. Then our Palliative Care Team made sure that we had any and every thing that we could possibly need before, during, and after his passing for Cooper, ourselves, and our other kids. They continued to check on us for months and actually continue to provide amazing care for Oliver as his PCPs. The Palliative Team also sent us home with an amazing Hospice nurse. We already had wonderful home nursing care, but she fit right in and could not have been better. All of those pieces came together to help us to understand that our children were very young and would each grieve in their own way now, but would grieve again as they hit new developmental milestones along the way and reprocessed what they had been through again in a new stage of life. I honestly didn't believe this part and I should have because it was spot on. My kids, each in their own way, have had to reprocess the loss of their brother and how it has changed their lives as they have gotten older. I'll tell you honestly that right this moment, I wish I was closer to Caroline so I could just hug her some nights when I talk to her because one of her classes has proven to be a real emotional bear for her. She is in a class called Disabilities in Film Studies (or something along those lines) and the topics have been gut wrenching and difficult for her. The instructors know a bit of her story, so they understand the emotion behind her presentations. They are both parents of children with disabilities and very heavily involved in advocacy work, along with being professors at Pace. So yes, children who are young when they have a sibling die have a long road ahead of them. The very best resource we were given was for a family bereavement center here in town that we took advantage of. We went every other Wednesday for close to 2 years. I'll admit that there were weeks that I couldn't bring myself to go. But mostly, we all went together as a family. The meetings began with a family style meal and then we either broke off into peer groups...the kids had separate groups and so did Kevin and I, or we would sometimes do a family activity together in the dinner room. The kids groups had several volunteers in them and they helped lead the kids in an art project and talking. They also had these rooms where the walls and floors were all covered with pillowy mats and the kids could go in there and hurl soft objects at the walls and beat the hell out of soft blocks of foam with foam bats - just get it all out in a safe place. Some nights, I wished the adults could go in there! The adults had a group leader in our small groups and we just had a chance to talk. Whoever was new went first, if they felt comfortable, to tell their child's story (because we were the child loss group night, though the center had all sorts of bereavement groups) and then everyone else would sort of check in or share what they wanted to share that day. At the end of the night, everyone gathered in this big living room area and sang Lean On Me. Kevin and I hated that part, but the kids loved it, although they all absolutely loathe the song in any and all of it's many iterations now.

So that is how we muddled through. Somewhere in there, I was so damned angry, I just wanted to throw something, so a friend suggested eggs. We went outside and the people on our street heard what was up and started running over with cartons of eggs. I have no idea how many eggs I threw at my house. It was a lot and they just kept appearing in my hands like magic, so I kept throwing them until I couldn't breathe because I was too tired and I was crying and then I was laughing because I had made such an enormous God Damn mess. At some point during my fit of egg throwing rage, my children got off the elementary school bus and came up the driveway to witness this spectacle. They still talk about it, but they only think of it as that hilarious time I threw a bunch of eggs at the house. They don't have any idea that I was a rage filled maniac at that moment, with a singular focus on complete destruction of whatever I could get my hands on and that just happened to be eggs, and that I had no idea that they were even there while this was happening until much later because someone else had ushered them into the house for me and gotten them an after school snack, recognizing that I was not in any shape to do that just then. 

But all of that was in the first 6 months after we lost Cooper. You know, within an acceptable window of grieving, when I was still allowed to be a little bit overwhelmed with the intensity of my grief. We live in a huge city but our community feels small in that everyone knows you. We had tried to remain active in our various volunteer positions within our community, despite the unpredictable nature of our lives with Cooper and after we lost him, we tried hard to resume our roles in those positions so our kids would have some stability in their lives even with the turmoil, but so many people we saw looked at us as if having a dead kid was contagious. I also found it very difficult and have found it difficult ever since we lost Cooper to get over excited or upset over something like a broken snocone machine at a school carnival that made other mom's cry. That sort of behavior disgusted me and made most of the other PTO moms despise me because I couldn't help but be exasperated at people who clearly had never had anything REAL happen to them in their lives. I wouldn't wish losing a child on anyone, that is not what I am saying. I am just saying that my life and reality had changed so much that being around people who were so far from my reality was not easy for me at all. And I'm not very good at keeping my opinions to myself, so it was a super fun combo. 

Around the time the kids started back to school, I noticed a big shift in my friends. Their were those who still called to check on me and didn't mind my shitty mood swings and there was everyone else. And I was very shocked. In fact, I would say that I went through another sort of grieving process for the people who I thought were my friends, but had really just wanted to be able to say they were a part of what that poor sad family had gone through.  And then I thought for sure that no one was actually my friend and that I had lost them all. This was the time when one very old friend told me that I was just too hard to be friends with because it was too hard to witness this pain and then she was gone.  It was also during this time that we found out that Oliver also had Mito Disease. There are some people we know, including family members, who, to this day, are certain we went digging for diagnosis, looking for it so we could continue the drama. They believe this because they themselves have never seen their own children (Thank GOD) through anything worse than a cold or a broken toenail and I pray everyday that that remains the case. The truth is, the day we were told the news about Cooper, we were told that we had to have the other 3 kids tested because each child had a 1 in 4 chance of having the same disease, but at that moment, having just been told that our son would likely not live to see 5, we were not ready for finding anything else out about anyone. We already suspected what we would learn and about whom we would learn it, but we JUST COULD NOT HANDLE ONE MORE GOD DAMN THING. So, we left saying we would schedule soon. Not even 3 weeks later, we were being medevaced to Pittsburgh for Cooper's transplant, so thoughts of testing our other children flew by the wayside. When we came home again and saw our Mito doc for the first time, unlike us, SHE had NOT forgotten that we needed to test our other 3 kids, so she had me sign consents for release of records on the other 3 kids. That way she could do a chart review to start, something she does on every new patient being evaluated in her clinic, and it turned out that we wouldn't have to actually worry about the other 3 kids for nearly a year because it was October then and the earliest they could get 3 new patients in on the same day at once into the new patient clinic was in September of the next year. I didn't argue with that at all. I didn't ask to be put on the waiting list for a faster new patient appointment for them like I had for Cooper. I was perfectly happy to continue to not know and we had no way of predicting that we would lose Cooper in March. Our Mito doctor made me promise that we would keep the appt for the other kids in September when she came to the house to see Cooper. I promised, so we went and then we were devastated and have been since. And now back to the grief of loss, which for us, was compounded by the grief of knowing that this vile and unpredictable and degenerative disease was marching it's destructive path through the body of another child.

Kevin and I did all of the things that you are supposed to do for ourselves and our kids. Besides the family bereavement center, all of our children have been in therapy off and on as they have needed it throughout the years. We have a couple of different therapists that we trust and like and who they trust and like. The therapists decide, along with the kiddo and us when they can be discharged from therapy or if they still need the help. Kevin and I have gone to therapy together and separately.  Sometimes for an extended time and sometimes for a check in of hey, am I crazy or is this normal or is this other person the crazy one or what? And that has worked for us. Our kids know that they can talk to us about anything any time of day or night and they do. Sometimes the things they talk about are things I wish I didn't know about, but I'm glad that they are telling me because it means that use telling them over and over and over for so many years that they can tell us anything and we will always love them no matter has sunken into their brains.

But even with doing all of the right things, and working hard to over come and do what so many want me to do and move on, here I am 9.5 years later and I cannot do it. I miss him every single minute of every single day. I miss everything about him. I would happily have continued needing to live the crazy and unpredictable life we lived because of his health for years and years just to have him. This physically painful hole that was wrenched into my heart when he breathed his last breath has not healed and will not heal until I am with him again some day. While it is true that I can stave off the tears in front of people much better now than I used to be able to, some days I can't. Qween Wowwie once told me that early grief is so hard because it is like it is right in your face, like a hand blocking your view around it. It is all that you can see and all that you know. But slowly, the hand begins to move out from your face so that other things can come back into view around the sides of it: just a little at first and then more and more the longer you have had to process your loss. I didn't really get it then. My view was too blocked by the hand of grief, but I can see what she means now.

As time has gone on, my great and overwhelming grief has found a home in that raw and empty hole in my heart that belongs to Cooper. I have gotten better and better at rocking that grief to sleep and letting it rest their, waiting for the day it can be released forever when my heart becomes whole and I am reunited in Heaven with my Boy.  But here is the dirty little secret that the lucky ones amongst don't want to hear. Those of us who have caught the dead kid contagion are always, for the rest of our lives, going to be putting on a happy face to make everyone else feel comfortable. That is not our natural state any more. We have seen things now, we have felt things, and know things that have changed us too deeply for us to ever ever be the same people that we were before we lost our child. It is an impossibility. I'm not saying we won't ever be truly happy again or actually laugh for real. What I'm saying is that, when you create another human and give it life, that changes you. I'm sorry, but you cannot tell me that it doesn't and into that tiny being goes a piece of your own existence, a piece of your own soul.  That is why Mother's have an intuition about their babies and I believe it happens when you adopt a child and make it your own as well. You are giving yourself to that child. That is what it means to be a parent. Your give yourself to your child every single day while your raise them and even after they have grown up and left home. So when you lose one of your children, the piece of yourself that you have given to that child goes with them and is gone forever and it will be a physically painful absence that will remain with you always. I have spoken to so many other dead kid parents and they describe this same visceral pain to me. And it endures. 

I know that I am broken now and that if you can't deal with that than you aren't going to like me. And I am okay with that. I talk about my dead kid. I talk about him all of the time. Oliver was so young when Cooper died that he doesn't even remember his brother at all now, except for the stories we tell. My kids like to talk about him. I love when other people tell stories about him that they remember. I hate it when people act uncomfortable when I bring him up and I then delight in making them uncomfortable by continuing to bring him up. Not talking about him makes the pain in my chest worse. And just because a memory or story makes me tear up, it doesn't mean I didn't like hearing it. Some days, the edges of the hole are just more tender than others and I can never predict it. Some times certain toys in a store will make me cry so much that I leave my cart and go home. Some times, I can't stand to see holiday decorations. From November 22 (Cooper's birthday) until we get through the deathaversary in March, a lot of times both Kevin and I are struggling. Some times Cooper's birthday falls on Thanksgiving and on those years, we ask our families and friends to allow us to please just have the time to ourselves and our little family of 5 has a small turkey and birthday cake for Cooper. We do that because it is too hard for me to be around people that day. We have also found that Kevin and I do not do well if we are separated on any days that are important to us for any Cooper related reason. There are a few that no one really knows about that only Kevin and I recognize as significant and that is okay, but those days have not gotten easier or changed in significance to us over the years. Their meanings are just as strong now as they were then and the feelings come back from those days. We work hard to make Christmas special for our kids each year but that is still one of the most difficult days of the year for us. It has never felt the same since we lost Cooper. He took the magic with him and we have tried to recreate it for the sake of the other kids. We try every single year and maybe the kids haven't known how hard it is for us and how much we are only doing it for them, but we will always do anything and everything for them. New Years Eve is hard because as each year passes we feel like Cooper gets farther and farther away from us and we get so much farther away from the time when he was here and it hurts. A lot. And then, as we come into the end of January, the anniversaries of every awful thing begin to happen. As much as I have tried to forget and to replace those memories with happy memories instead, the nightmares surrounding the awful events of that time just will not fade or go away. I relive everything in slow motion over and over again and I have nightmares of those times as well. And I know that might not make sense to some of you reading this now but when I share his whole story some day, it will. The nightmare times, his final gasp of air, watching him bleed out that first night in the ICU while 2 nurses stood over him squeezing in bags of blood and plasma and ffp as fast as they could while clots just gushed out onto the floor from his pale little body.  These are the things I see when I close my eyes, even all of these years later. And yes, I have been treated for PTSD. It's a process.  

I don't know, maybe my perspective is way off because my dead kid experience was so traumatic in so many ways and every parent I know in the same boat had the same sort of experience as we had, so they too are jaded. Perhaps it is just us rare disease parents who live with the never ending nightmares and raw, physical holes wrenched through our hearts for the rest of our lives. Maybe It's just those of us who have fought so damn hard for our children to just be able to live that when they don't we never can quite believe it or accept the defeat because, God Damn it, they were warriors and didn't deserve to lose. But the few parents who have lost kids in other ways who I have spoken with or come across have spoken of similar feelings. They don't have the same kind of nightmares I have, but they have the same hole in their chest the size of their lost baby. Child loss is a nightmare all it's own that cannot and should not be grouped in with other losses. And people need to realize this and back the fuck off and allow us all of the time, or forever if we need it, to grieve for the loss of our child.  After all, it goes against nature. Children are not supposed to die before their parents. It is backwards and wrong and just shouldn't happen. That is probably why so many of us dead kid parents are never the same again. The natural order of life has been broken and it breaks our hearts in such a way that cannot be repaired here on earth. We have to wait to be reunited with our babies again in Heaven. That's the promise that keeps me holding onto any sort of faith at all anymore.