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.

About Me...

 So, I've decided. It's taken me a long time. Years actually. I used to do this. Write. Blog. Every single day, for years and years. I poured my heart and my life out upon my keyboard each night, after my kids were asleep and the house was quiet. It was my time and sort of my therapy, actually. And then I stopped. In fact, I somehow took my last blog down so completely and completely by accident, having only meant to take it down from public view, that the final years of my writing are now lost forever. Thankfully, my earliest writing was saved. It chronicles the life and eventual death of our youngest son, Cooper. You probably think that is a sad and tragic tale, and it did have it's moments, but it was also a beautiful journey, filled with so much laughter and joy. The last years of my writing were more about the grief. The time after we lost him and also the time of discovering that another of our children suffers from the same God Damn disease. Some people didn't like the ugly parts, the very true and real parts, of either story and their ugliness is what finally made me hide away. 

I have missed the writing, so I've decided to say fuck it to all the assholes and come back in an even more honest way than I ever had. Because this entire life of mine, my entire journey, has been one hell of a ride and I have learned a lot of things and I have a lot to say. As I recently stated in a FB post that I was tagged in, I'm not for everyone, but I'm for some. There are people out there who get me and understand my, well, my sense of humor and the only thing that has helped me to survive. My amazing husband and I share this dark sense of humor. He tells everyone that he is dead inside and prefers it that way and if he ever begins to feel feelings, he just needs a higher dose of his medication. Our 3 beautiful kids share in our humor very well and we haven't gotten too many calls home from school about them...just that one second grade teacher to let me know that my sweet Caroline was telling a joke at her desk that began with, "Okay guys, a Priest and a Jew walked into a bar..." She was stopped by dear ol' Mrs. P before she got any further and the funny part to Kevin and me was that the joke was really a Priest and a Rabbi joke (and it wasn't even dirty which is why she knew it in the first place. I mean come ON people. She was only 7 years old. We do have some standards. Dirty jokes were not allowed until like 10, at least for the oldest child. Standards go down hill fast with each subsequent child!) and we had no idea where in the Hell she had learned the word "Jew" and made a sort of proper substitution when she forgot the word Rabbi. Our brilliant jokester is now a college Freshman at Pace University in NYC, studying in the Honors College  to be a Director and Playwright, so we must have done something right. Adam is currently working on college applications, as he is a senior in high school and a Drum Major. He is my only child who I have never gotten a bad kid call home about. He saves all of his snark and sass for me at home. He is also my heart and always has been. My being away so much during our many hospital years with Cooper years ago and even more recently with Oliver affected him the most. And I will never be able to forgive myself for that, no matter what any doctor, therapist, or friend tells me. In my head, I know I couldn't be in 2 places at once, but in my heart, I am his Mom and I should have been with him just as much as I was with his brothers because he is just as important.  And then there is Ollie, the family clown and mouth. Don't tell him your secrets. He doesn't mean to tell. He just can't not talk. He never isn't making noise. And I know this very very well, as I have been homeschooling the child for the last nearly 2 years, so I'm with him ALWAYS. He even talks when he sleeps. If he isn't actively talking to you, he has on one or sometimes even 2 sets of headphones (One for music and one for video games, hello!!) and he is singing, so there is always some sort of noise surrounding him that is coming out of his mouth. I love him so so much and we all are used to it, but we also all encourage him to go hang out in his room for a while each day. As I said earlier, Oliver is our other child who has been diagnosed with the same disease that stole Cooper from us: Mitochondrial Depletion Syndrome - a rare beast among this already rare disease. Unfortunately, the exact genetics of their disease is, as yet, undiscovered, but I plan to talk more on Mito Disease, the community as a whole, and Advocacy in another post, so more on all of that stuff later. Ollie is currently the healthiest he has been in years, which is a wonder for all of us to see. About 2 years ago, and for about the whole year prior, he scared the absolute shit out of us with how sick he got. He had been struggling more and more for years, with his doctors adding more and more interventions and Kevin and I literally taking him from hospital to hospital in a desperate attempt to find some way, any way, to help him. In the end, we wound up back at the old Mito Clinic, no closer to answers and with a sicker child than we left with him, but he had caught the flu, which caused his stomach to fully shut down and from there, things just spiraled down. Ollie is a fighter, though, and, despite some nearly catastrophic failures on the part of one team member (more on that in another post, too...about Doctors and why they aren't always right), Ollie has fought his way all the way back and then some. He's in 9th grade now and still plans to be a chef, although he'd like to take a crack at AGT with his Voice, too. If you couldn't guess from the title, I am not the sort of Dead Kid Mom who shies away from the truth of how many kids I have when someone asks me who doesn't know me. I have 4 kids. Cooper was. He came into this world 10 weeks early and began his fight. He never had any breathing issues in the NICU, but boy was it hard to feed him and that would really define his life. Eating was always just so very very painful. As soon as we came out of the NICU, we were brought right back in because his pain and struggle to eat was so great that his heart monitors were going off all of the time. The NICU doctor (who I thought was a total jackass) was sure my worry and fretting was because I was a nervous mother. I was like, dude, this is my forth kid, second NICU kid, my first kid had her first eye surgery at 6 months and has had 2 more plus an open hip reduction, 2 months in a spica cast following surgery WHILE I was at the very end and then overdue with my second child, then she was in a brace for 6 months and in PT to learn to walk, run, jump, go up stairs, EVERYTHING for 5 years, my second child had horrendous reflux, was allergic to everything, causing me to go on the total elimination diet to be able too nurse him, and then he had Sandifer Syndrome, which looks like seizures, because he was in so much pain from the reflux, my third child was also a preemie, spent time on the vent, had feeding issues, severe reflux and allergies like his big brother, was FTT for a while, was delayed in all things physical, but talked in sentences at 9 months, and you think I am a nervous mother? Yeah. He shut the hell up after our little discussion. The nurses in the NICU and the Pedi unit refused to feed Cooper because of how much pain it caused him, so when I was sleeping one night, they dropped an NG tube and gavaged his feedings over night while they were letting me rest. Their support of my claims of his breath holding, choking, and heart rate issues during feedings that took hours and tired him out went a long way and we started seeing a GI doctor who Oliver still sees to this day, our beloved Dr. V. Cooper's story is long, very long. I plan to post it here in bits and pieces from my old blogs at some point. He was a shining light in our saddest times. He never questioned or complained. He yelled for his nurses when it was time for his medications as he got a little older (okay, he was 2.5 when he started pooching out his little lips with an attitude and yelling out his hospital door for who and what he wanted, but he basically lived there, so everyone laughed and that just encouraged him!), he sucked his thumb in the cutest way while holding on to his Duckie or Oofie, he gave the best kisses, loved with the biggest heart, and he had this smile and laugh that stopped time and made you want to laugh along, no matter what you had been doing. And God do I miss him.

And I'm going to talk about that and him and any damn other thing that I want to talk about. If you aren't okay with that, then you don't need to be here. I've been asked so many times by people in this difficult world that our family lives in, this place that no one wants to actually know about or talk about, the Dead Kid world, where did I go and why did I stop writing? I didn't honestly know who was reading or if what I had to say helped or reached anyone. And I have been asked the same thing by other parents in the Mito and Advocacy world who followed my blog for updates 0n Oliver's health as well. The honest truth is that I have been told by so many people, be it friends (although I use that term loosely here because anyone who has said this to me is no longer considered amongst my friends anymore), family members, through the grapevine PTO, Mom friend, Neighborhood, or doctor/nurse gossip (yes, that's a thing) that they really thought or other people they were gossiping about really thought that I should be over the whole Cooper thing by now. That I was really dragging out my grieving and it was making a lot of other people uncomfortable and I needed to consider these other people, who, by the way, had never lost a child's, feelings. I thought I was doing a damn good job. I get out of bed and put on a smile for everyone, and these days, the smile is even real a lot of the time. I mean for Christ Sakes, at least half of our friends, people who had been what I thought were my BEST FRIEND, people we literally thought of as members of our family, ACTUAL members of my family, people who had been IN our home and watched as our son DIED or arrived to share in special moments with us before his little body was taken away...all of these people who we thought would be there for us after he was gone had just turned their backs and walked away from us. Most of the time we never even found out why they stopped calling or returning calls or even making eye contact if they were in the same room as us, but a few of them told us that it was just too hard to be friends with us. It was too sad to witness this great loss. So now I know. I know who was just with us to be able to tell others that they were there. Which is really fucking disgusting and a whole lot of psycho. Who becomes friends with a family of a child with a terminal illness just to say they were a part of that whole thing...a witness to the messy bits and even to some of the absolute best bits. And the family members who never bothered to actually get to know Cooper, although we begged and pleaded with them to please come see him while he was alive and well, but only came around at the end, for the last bits, to be a part of the tragedy and film and take pictures with the nearly dead child. And once he was gone, they were all gone. There for the funeral, sure, but then just gone. Some of them gone for good from our family's life, again for reasons we have never learned. And I've tried. God I have begged. I have called, invited, asked for calls back, left messages, sent letters in the mail, email, messenger,  and occasionally, I will be told that I'll get a call back with a date to get together soon or even get an answered call where we talk for a bit, but nothing changes with anything. And I'm tired of trying to apologize for still grieving when I am not sorry about it at all. And I am tired of feeling like I have to apologize that we have another child who is ill, because I'm not sorry at all about that either. I'm damn proud of Oliver and the fight that he battles everyday. It's messy and hard at our house sometimes, but that doesn't make us bad people. So, I am certain in who my friends are and I can't say that I have a whole lot of them, but that is okay. The ones that I have I know for sure are the real deal. They are the ones who rang my door bell over and over on days I refused to come out of my house, forced their way in, got me out of bed, and made me drink mimosas and eat breakfast with them. They are the ones who knew how hard the first day my kids went back to school would be, so they took me out shopping and made me buy a pretty sundress with a few sparkles on it and some sparkly eye shadow because everyone needs a little sparkle in their lives. They remember Cooper's birthday each year and send a card or a text just to let me know that they know that the day isn't lost and that they remember that Cooper was and that is everything to me.

All of this is about me.  And I plan to write about me and what I have to say. After nine and a half years of missing my Boy, fourteen years of being an advocate for a medically fragile child thanks to becoming a mom to my first child nearly 19 years ago, who gave us a run for our money and taught me that doctors are not always right and sometimes parents know best, and nearly 20 years of marriage that has survived all of our crazy, I think I have learned a thing or 2. I've definitely learned that I'm tired of being nice and doing things because if I don't, someone else might feel a little uncomfortable. Life isn't always comfortable. If it was, it would be really boring.  Back when we were kids, my big sisters used to make me call their ex boyfriends or even girls they were in fights with and duke it out for them, because I refused to back down. If they ever got back together with their exes, those boys were forever slightly terrified of me, and rightfully so. I wasn't taking any shit. As an adult, there are some famous stories of me (ahem...let's never forget the great bridesmaid dress snafu or 2000, shall we? I know a certain sales rep who never will and Comcast still shudders at my name because they are so COMCASTIC!) giving serious Hell to some customer service and insurance company people, Oh and DME companies (Burn in Hell Apria!!). My Mom still makes me do all of the calling to businesses for her if she has been slighted in any sort of way. I just don't take shit off of anyone. So why have I allowed myself to be chased away from reaching the communities that I love to help the most, doing something that I enjoy doing that, honestly, helps me a whole hell of a lot, too. The answer really and truly is that I do not know. This life can be or at least can feel like a constant and unending fight. There is never time to come up for air. Writing is like breathing for me. It makes me feel like I have taken a deep breath of calming air. That's why I'm back. Because this is me, like me or not, and I refuse to shut up or be pushed away, even though being friends with me is hard. 

I'm going to end this with something that I wrote in an email to family and a few friends back in 2008. It was before the worst of the shit had hit the fan with Cooper and my updates were written out in emails to them. I didn't have a FB account. Was there FB then? I don't know. I was a member of a couple of "Birth Boards" on a forum called Baby Center that I had stumbled across while bored at work and pregnant with Caroline back in 2001. I wanted to know what my due date was based on the date of my last period. I had just found out I was pregnant. Anyway, Baby Center was the first "Due Date Calculator" that popped upped in my search engine and once it gave me my date, it had a little button that you could click to "connect with other moms due at the same time." I had no idea what that meant or how that one click would for real change my life and what it means to know people for more than 18 years now, even though I haven't met all of them in person yet.  Anyway, sometimes, I would post my updates about Cooper to my original birth board for Caroline - the bond I had with them was tremendous, but it was hard to find that on an entire board like that again. I found that bond with a small group from Adam's birth board, as well as with an amazing group of women from the "Babies with Birth Defects" board. Those girls are, well, I cannot fully or correctly find the words to describe how important they are to me and my family. We've been blessed to meet many of them and share our families with each other. They often know about what is happening with me in my heart more than I will admit to anyone else on the planet and they love me anyway and EVERYONE should have a group of friends like that. Sorry, I've greatly diverged, but now you know I'm one of those weirdos with internet friends, although isn't everyone with any sort of social media one of those these days? I guess I'm weird because I actually know my internet friends for realz. Ew. Who even does that?  Okay, so this is something I wrote after an onslaught of emails and phone calls from friends calling me something that I didn't feel then and have never felt of myself, no matter what has been going on with our family, or how crazy our lives have been. I have always just been me. But I've been reading back over some of my old blogs and found this in an incorrectly marked file tonight. After I wrote it, my sister Liz told me I should write. At the time, she meant a book. I started a blog instead. And a book has always been a dream but, well, life. I'll be back tomorrow to talk about something important to me...my thoughts on grief. Thanks for checking out the new blog.

May 18, 2008

The truth is, I am no where near the "super mom" that so many of my friends keep saying I am.  The truth is, I am scared to death and most days, am just getting by.  The truth is I want to be all things to all people, but I am learning that I can't be.  The truth is, sometimes I let someone down and the hardest people to let down are my kids, but sometimes, I have no choice.  The truth is, the truth hurts.

 How does a mom make those decisions?  Do I go to field day with the other Moms on PTO or do I keep the appt for Cooper that has been set up for months?  Do I let my 6 year old down because she is pretty sure that I will be the *ONLY* Mom not there or do I do what I know is best and run from one end of town to another with Cooper for appts.  I try not to have to make those decisions, and sometimes I get a little wink from God so I won't have to, like a weather delay for Field Day that allowed me to keep appts AND make sure that my 6 year old was not the *ONLY* child there without a Mom present.  But here is a glimpse at my calendar from a week ago...and this is just 2 days worth...

 Wednesday: 8am Take Caroline to school; 8:30am get Adam and Oliver to my Mom's house, trade cars with her, and Mom is now in charge of Adam and Ollie and getting Adam to and from school; 9:15am -10:45am be at TCH satellite office for OT eval for Cooper; Noon - be at TCH downtown in the Medcenter (40-60minute drive) for Coop's appt with genetics; Coop spikes a high fever - call Ped from TCH downtown - Ped says come in now; Drive back to Ped (by the TCH satellite office 40-60 minutes away - ends up being 90 minutes because of an accident) for a 3:15appt; Drive to Mom's house to trade back cars and pick up my 3 oldest kids - get that God Wink about the rain delay for Field Day.

 Thursday - 8am Take Caroline to school - Mom met us at our house to keep 2 little guys for me and to take Adam to school; 8:30am - Volunteer appreciation coffee and K performance at Caroline's school; 10:30 - read to Caroline's class; 11am - Lunch with Caroline; 11:45am - be at Adam's school to help set up Mother's Day luncheon; 12:15-1 - Mother's Day luncheon with Adam; take Adam to my Mom and pick up Cooper; 2:30 - meet Kevin at TCH satellite office to meet with surgeon about Cooper's surgery; Go back and pick up 3 big kids from Mom and head home

 Somewhere in there was Kindergarten round up, a second Ped appt for Cooper, ballet, and who knows what else.  Plus the laundry got done and everyone ate a home cooked meal at night. Oh, and I made dinner for another Mom in Mom's club.

 This might be where the super mom cape idea came from from my girl friends.  But what no one realizes is that at least half of the time, I let someone down.  I can't be at every PTO function or presentation.  I can't make it to after school play dates or even during school playdates for Oliver.  And my patience these days is thin.  My family and my husband are worried about me and wonder where my fun loving spirit has gone.  I put on the happy front for my friends, but at home, I am sad.  I am sad that my 18 month old has to have more surgery because no matter how hard we have tried, we can't get him to eat. I am sad that unknowing people can ruin my whole day by making me second guess our decisions with simple comments like - "My baby is a really picky eater, too...all kids go through it."  And as dumb as it is, I ponder that thought and think about what I am doing wrong.  But then I remember that the ONLY reason my baby is even gaining weight is because he is on one of the highest calorie formulas on the market (and don't get me started on how many days and hours I spent fighting the insurance to finally get that covered).  And I remember that at least 7 doctors agree that this is the best thing for Cooper.  And I remember that Cooper's stomach can only hold 2 ounces when it is stretched to it's fullest and I know he can't survive that without this g-tube intervention.  But I still doubt myself and our decisions and wonder just the same if I have done all I can for him.

 And that doubt and worry is what has taken over my life and my fun loving spirit.  And I yet again let someone down.  My kids and I still dance around the living room and I still act silly with them, but right now, it is just an act.  It doesn't come naturally like it used to. I am a prisoner to my phone all day and night as doctors, insurance, hospitals, and nurses call me.  I panic if I can't find my phone for even a minute worrying that I might have missed a call that could take hours to get returned to me.  I don't want to be that person. I feel ashamed that I envy people with "normal" lives sometimes, but I only feel ashamed because as crazy as this all is, I wouldn't trade it for the world.  My kids are my life and my life is my family and I will always do what it takes and be where I need to be and go the extra mile to make sure my kids aren't the only ones without a mom there. 

 But sometimes, like right now I am just sad.  I want to be super mom, but I can't be because this super mom is worn out and worn down.  This super mom has hit her wall and needs a glimpse at the other side to know that there is a rainbow of happiness for all of my kids on the other side of that wall.  This super mom wants to know it is okay to show weakness and cry about the hurt her baby is going to have to endure and morn the loss of the "normal childhood" he hasn't had.  This super mom wants all of her kids to be nothing but happy without a care in the world.  And make no mistake...this super mom KNOWS she is blessed.  My kids may have issues, but we have seen so much worse and we are blessed that we haven't had to endure what so many others do. 

 And so today, I am hanging up my cape and telling it like it is.  I needed to tell it to myself.  I need to know things WILL be okay and my feelings are NORMAL.  It is going to be hard and who knows what may happen next.  I'll dust my cape off again if I have to to make it through.  But right now, I just want to be a mom who loves her kids and wants them all to be well.  I want to be a mom who cries when she is stressed out and plays silly games with her kids. I want to be a mom who is patient and happy and fun.  And I know I can be and I am that Mom.  I just needed to find her inside and forget about the front of the costume with the cape.  I just need to be me because that is the best thing I have to give my kids.