Turkey, Tears and a little Apple Pie, too

Ronan. Yesterday was one of those beautifully bittersweet days that will forever be. We spent the day at home, together enjoying each other and just taking it easy. I cooked an apple pie while Macy made her pumpkin. Fernanda came by with a turkey that she had made for us. She brought her 5 kiddos, too. I got to get in some hugs and kisses from her sweet baby girls who are 4. I think about that a lot. How they are just a little older than you, before you left this world. I like to sit back and watch them and imagine what you would have been like if you had ever had the chance to be their age. If you would have been here, you would have been running around with your brothers and Fernanda’s boys, shooting toy guns and playing some hide and seek game with them. You would have been in the middle of everything. Fernanda and her gang soon left just as our other friends started to arrive.

Mandy came with her family. Melissa came with hers. Uncle Jay stopped by, too. Soon our house was filled with the warmness and happiness that it sometimes lacks. The girls got all the food ready while the guys watched the football game that was on T.V. The kids all played outside, throwing the football and playing hide and go seek. Melissa’s daughter hung out with us and we did girly things like paint her nails. With sparkles of course. We all sat down for dinner, in the most informal way. Just the way we like it. The kids at one table and all the adults kind of scattered about. All of the girls, sat around our dining room table. The guys went back and forth between us and the football game they were immersed in. It was a nice, low-key dinner. Your absence was so very present though. There is never a time where we aren’t thinking about your or missing you. That goes without saying, always. At one point during dinner, Melissa quietly said a little something about you. That is one of the reasons I appreciate her so much. It’s the little things, such as her simply saying for as thankful as she was to be with all of us, in our home for Thanksgiving, that the reason we were all together was so sad. It is due to your absence that we were in the company we were in. It is so true. It’s because of you, that we are surrounded by our dear friends, some whom we wouldn’t have known if it wouldn’t have been for going through something as awful as this. I started to cry at the table, Macy next and everyone else soon followed. Tears and turkey it was. Tears and turkey it will always be. After dinner, we let the kids beat the shit out of a piñata that has become a tradition of ours during Macegiving. They had such fun doing it but once again, even during all the giggles and excitement, I couldn’t help but think of how unfair that you were not there, to join in on the fun. You would have loved our untraditional holiday, so very much. Pinata’s, mexican food, mullets, mustaches, fireworks and a bit of turkey, too. That’s how we roll on Macegiving. It was a night full of love, laugher, and sadness. Another holiday down. I was just glad to have gotten through it and I was even more glad when it was over. Holidays will never be the same for me again. They just don’t have much meaning for me anymore. They have become something that I feel our world puts so much silly importance on, while the real meaning gets lost in translation. Why do we sit around one day a year and take that one day to try to be thankful for all that we have? Shouldn’t it be like this every single day that we are alive and healthy? I swear I heard more about Black Friday then the actual being thankful for Thanksgiving. That makes me want to vomit. It’s the real world petty bullshit that I have such a hard time with. All week I felt like covering my eyes and ears to all that was going on around me. I don’t want to hear about all the amazing black friday sales. I don’t want to hear about the fightings and shooting over all the sale item stuff. Because at the end of the day, that’s all it is, is stuff. And as we all know, stuff isn’t what matters most in life. But fuck, do people sure act like jackasses about it. Clearly, these people have never watched a kid die from cancer, right? And if so, then I don’t really even have words for that. Don’t get me wrong, I like a good bargain in life. But when it comes the day after I was supposed to sit around and be thankful for all that I ALREADY have, well that to me just seems a little ironic. And stupid. And I want nothing to do with it.

The day after Thanksgiving we didn’t do anything. I was wiped out, Macy was wiped out, everybody seemed to have an emotional hangover. We stayed at home. Cuddled. Watched some movies. Took naps. Ate. I felt like I was in a coma. I forget how the emotionally exhausting these holidays are for me until they hit me the next day. Holidays are exhausting regardless. Add a dead child to that and times it by 1000. It is almost unbearable at times. I knew that I could take one day to gather my strength back up but once Saturday came, I was going to have to face the day. I was glad when Saturday arrived as I had a plan of action. I do much better in the world when I’ve got a plan in place. Without one, I feel like I am just floating around, trying to make it through the day without wanting to slit my wrists. A plan for me, keeps me focused and in line. It’s almost my lifeline in a way.

Macy and I ran around getting some things for your Candy Cart, Ro. We had made a plan with Phoenix Children’s Hospital to do your candy cart on Saturday. In my mind, I was thinking about all of those kids, stuck in the hospital who didn’t get to go home for the holiday. In my mind, I knew of a way that I could bring some smiles to their faces in a really easy way. In my mind, I was also selfishly thinking of me and how I knew doing something like this, for others helps me to get through rough things like Thanksgiving. I also knew your Macy would be honored to be a part of it. I was so excited when Saturday came around it was all you and these kids. We decked out your cart with candy and toys. Thanks to the awesome company, Spirit Hoods, we also had some really great animal inspired hoodies to give out as well. Remember how we used to wear ours in the hospital all the time? How soft they are and how warm they kept your little bald head? They contacted me a while ago and asked if they could send me a bunch. I was of course, over the moon about that. Their hoods make such perfect sense to give to all of these bald-headed babes. Stacy, Mandy Bee and Macy all helped me with the cart at PCH. You should have seen the smiles that I got to see today. You should have seen the way the kids’ faces lit up over the goodies that we brought. You should have seen the way that I felt a little bit happy, being able to do something so wonderful in honor of you. You might think after going through all of this, that I would never want to walk on an oncology floor again? Not true. It is the only place I feel sane in. It is the only place I feel like I belong. Not only did I get to make the kids smile today, but I got to make some parents smile as well. That to me, means just as much. We ended your candy cart day by walking to the elevators and I hadn’t really seen any of us cry yet. I looked over at your Macy and saw her wiping away her tears. That gets me every time. Once she starts, I start and then there is no stopping it. She said something ridiculous like, “I’m sorry. I have a crying problem.” I laughed and thought to myself…”A crying problem? I don’t think so. More like the biggest most genuine heart I’ve ever seen anybody in my life, have.” I don’t know what I would do without that girl, Ronan. I thank my lucky stars every single day that she came into our lives when she did. I thank my lucky stars every single day that I watched the two of you, fall head over heels in love with each other. I thank my lucky stars that she is still here and is still one of my very best friends. Thank you, Ronan for our New York Miss Macy. She is my sunshine during these very dark days.

I’m tired. It’s late. I miss you, so very much. I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.

xoxo

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It’s 3:25 a.m.? Rise and Shine Insomnia!

Ronan. Not crying. Not crying. Not crying. Who am I kidding. #cryingallday. Everything hurts. Nothing gets easier. I don’t miss you less. Who is the jackass that made up that “wise saying?” That pain becomes less as time goes on. Obviously someone who never lost a child. I met a friend this morning for coffee. She lost her daughter to cancer. Her baby, was 21 when she was diagnosed. Twenty freaking one. And it was to childhood cancer. If that doesn’t scare the shit out of you, nothing will. It scares the shit out of me and I know what it’s like to lose you to cancer. It scares the shit out of me, for Liam, Quinn, and now this Poppy baby. Cancer can strike at any time and the fact that options for all these kids is so limited, is beyond bullshit. I know the pain of losing a child, at any age, is awful. But I think about my friends daughter, and the fact that at her age, she knew what was happening. That destroys me. And I hurt for my friend who had to bury her child who was pretty much an adult. And now has to stay here and is expected to go on with this so called life. It’s all so unfair. We talked about how painful this is, how time does not make things better, but how we both know we will see our babies again, someday. But how not physically having them here, is so very difficult. We both ache for our children so badly that it makes every single bone in our bodies throb with pain. Especially during the holidays. Everything seems heightened to the max.

After I left my friend, I ran to the store. I was on a mission to grab some things for our very empty refrigerator. Mission accomplished without having a breakdown. I came home and started whipping up the pies that I had promised your Mr. Sparkly Eyes. Homemade crust. Homemade whipped cream. An apple pie first. I had my iTunes on. Of course my Taylor Swift playlist was playing. I like to listen to her when I bake. I had just put the apple pie in the oven when your song, “Ronan,” came on. I always skip over it if it comes on my playlist. Not because I don’t love it. Because I do. So much. I still think it is the most beautiful song that I have ever heard. But because I know what happens when I listen to that song. I end up with a black mascara filled face and usually huddled up on the floor somewhere. I had my hand on my keyboard to skip it, but I told myself that today, I would listen to it. I let it continue to play. I let the tears come, too. Every single lyric, makes me lose it. I wanted you so badly, to be in the kitchen cooking with me, like we used to do. I so badly, wanted my little sidekick and partner in crime. The song finished. I cleaned myself up and continued on to my pumpkin pie. I let myself get lost in my baking. They turned out beautifully. I hope they taste as good as they look. Tomorrow, I will bake with Macy. She wanted me to wait for her, to do our pies.

I wonder if my sleep will ever be the same again. I fall asleep easily much of the time, only to wake up like clock work around the time you passed away. Your daddy knows I’ve been having the worst time sleeping. He looked at me the other morning and asked what was going on, that I was having such an awful time sleeping. My eyes started to tear up and I just said, “Because I don’t know where my child is.” That is how I feel. Like you are missing and not actually dead. Missing but I’ll never be able to find you. I will forever go on searching for you in this messed up world full of things that don’t make sense.

Macy is here now. Tomorrow is here, too. I will do my best to get through the day. I miss my mom and your Papa Jim so very much. I am thankful for the friends that are like family who will help us get through the day. I would give anything to be with you, through. I will take this Macegiving to count the things that I am thankful for, on one hand. That is about the best I can do. I think that is pretty good, considering our circumstances. Last year I probably would have said I was thankful for nothing. This year, I know the things in my life that I will be thankful for and my list won’t include stupid black friday. My list will include the things that are truly important such as the health of your brothers, this Poppy baby, your daddy, our loved ones and for all the people who have been touched by your story and who are helping keep you alive in a way. As always, I am thankful for you and that I am your mama. I am not thankful to that asshole cancer. I would like to rip it’s face off with my bare hands. I’m working on it but my revenge will never serve justice for your death. Nothing will. I don’t even want fucking justice. I just want you back. I just want this to all be a dream and to wake up now. I am so tired of this life without you.

This is all for now. It’s 4 a.m. I’m not tired but my eyes burn and my brain is mush. I am going to try to get a little more rest before I have to take on this day. I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.

xoxo

P.S. Dear lovely little blog readers. I love you. I hope you have a great day today filled with all of the simple things that matter. Thank you for not being thankful for any of the shallow things in life, but for the things that truly matter. Thanks for learning this lesson and letting it make you a better person. Please keep all the other people out there, who may be going through a hard time, in your thoughts. I have a bunch of families that I will be thinking of, not just our own. I am truly thankful for all of you. I love you. This was our last Thanksgiving with Ronan. I was so happy. It was my best Thanksgiving, ever. I love you, Liz. I love you, Ronan. I am forever so very sorry I couldn’t fix you.

Hello suicidal friend. Wanna go to Ikea with me?

Ronan. I had a dream about you this morning. I was up off and on all night last night. 12:30 a.m. awake. 3:25 a.m. awake. 6:23 a.m. my phone rang. It was your Sparkly. I shot right out of bed. My heart sunk. Why is he calling so early? Something must be wrong. False alarm. Everything was o.k. I fell back asleep after that. In my dream, I was with your daddy, I think. You and your brothers were sleeping somewhere else that wasn’t our house. I made your daddy drive over to check on you. We opened up a back door to a house that was unlocked. We crept into a bedroom. I was only concerned about seeing you. In my dream, I didn’t know you were dead. I ran over to the bed where a tiny little boys’ feet stuck out of the covers. I pulled down the blanket off of your face just in time to see your beautiful full head of hair and watch you open your eyes and look at me. I kissed your little cheek and felt so happy, but I didn’t know why. I get to see you all the time, in real life, right? I remember saying to your daddy. “He opened his eyes.” Just as I said this, real life happened and the noise from your brothers, jolted me out of my sleep. Oh, how I would have given anything to have had more time with you in that dream. It took me a minute to remember my dream and that you were not here, for me to kiss. That is always the hardest reality to wake up to. The fact that I only get to see you, in my dreams and not here, in your bed or running around our house is such a cruel, horrible reality.

I got up. Helped make breakfast for everyone. Acted as though everything was o.k. this morning when mornings around here are never o.k. My heart has been heavy for the past few days. Remember that sweet boy, Teddy, that we spent some time with in San Diego this summer? The sweet little Teddy that reminded me so much of you? He has been doing really great, then suddenly out of the blue, his parents find out that his Neuroblastoma is spreading like wildfire. They have been told there are not many more options left. His mom, whom I adore, is faced with the decision to just let Teddy live out the time he has left here, or put his through some really harsh chemo to try to slow this monster down. The same kind of chemo, that left us inpatient at Sloan for 24 days, and did nothing for your disease. My heart is breaking. I don’t understand how this can just keep happening to these kids who are so loved in this world and are so innocent. I feel so helpless for his family. I don’t want them to know this life I live, one without your child. It is just too cruel of a world to live in. Please keep Teddy in your thoughts, prayers or whatever else you do. Ronan. You know what to do little man. I promise I am trying to fix this as best as I can. I just can’t keep up with all these kids dying, one after the other. I wish I had a magic wand and wishes really worked. I wish everything was that simple. You can visit Teddy’s caring bridge, here. I know what his parents have decided to do. I will wait for them to post an update, to tell us all.

http://www.caringbridge.org/visit/teddybergergreer/journal

Even though it might seem like I’m in a really dark place right now… because I am. I am still managing to somewhat function in this too bright of a world. For instance, yesterday I went to a kids fest, Ro. A kids fest without you in tow. Do you know how achingly hard this was for me to do. A festival full of healthy kiddos, just as the world should be. There was not one bald head in sight. I was asked to do a reading there of the kids book, “The Lorax.” I had so much anxiety about this the night before. I tossed and turned. Dreamed about not being able to get through the book, without you there. I took your daddy and your brothers. Fernanda and her 3 boys met us there, too. I sat in a chair and read this story to about 20 kiddos. I talked to you before hand on the drive out there. I closed my eyes in the car. “Please Ronan. I need you today. Help me get through this. Keep me calm, cool, and collected. Help me do this. Stay with me. I need your help today.” I thought to myself, this can either go two ways. I can lose my shit and not be able to control my emotions as I knew having to look out into a sea of kids, and not see your face was going to be rough… or I can keep it together and stay focused on the people I had there, who I love so much. I looked out into the audience. I saw Fernanda’s face. Her boys. Your daddy. Your brothers. I looked down at my feet to see a random little girl, playing with my sparkly shoes while I was reading. This made me smile. I can do this today. I will do this today. I will do this and be proud of myself for doing something that feels so hard to me. I let myself be proud for the .2 seconds that I allowed. That is all I needed. Your brothers had the best day. They got to run wild and free after my reading and enjoy being the 9 year olds they are. I am always glad to see that. I let that be enough for the day.

I have been busy around here getting ready for our Macy’s arrival. Quinn has probably asked me about 10 times what day Macy will be here and what time. She changes the whole dynamic of our family in such a good way. For the time that Macy is here, it is always a time full of laughter, love, and peacefulness. We seem to always have plenty of tears, too, but somehow the tears feel easier when Macy is around. I am so thankful she is coming in for our second annual Macegiving. I am so grateful for our sweet friend who is a part of our family. I am so thankful that she will be here for us on another one of our hard holidays. They all seem pretty hard, but things are a little less hard when Macy is around.

This is all for tonight, little one. Rita just texted me, “Hello suicidal friend. Wanna go to Ikea with me?” That is some seriously funny shit right there. At least it totally made me laugh out loud.  I miss you. I love you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

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A Poppy Shower? O.k. Only if tradition does not exist.

 

Ronan. I survived your 18 months. It rained. Of course it did. It was a hard day with a lot of tears but I didn’t die. If pain alone could kill me, I would have died about a million times by now. I’ve been busy but not in my normal way of running around like a chicken with it’s head cut off. I’ve been doing a lot of things around our house, which you know kills me. I’ve been spending a lot of time with your brothers and daddy. We have gone out to eat a couple of times, as a family. “Table for 4 please,” never becomes easier to say. I always have to say it fighting back tears. I told Rita yesterday that being pregnant makes me suicidal. I was kind of joking but kind of not. I feel really alone and isolated with this pregnancy. Like I am the only mother in the world who has lost a child and is now carrying another life inside of her. I know there are other mothers out there, who have gone through this as well. But they are not really in my inner circle, unless you count Dr. Jo. So for the most part, I am alone in this. Nobody else that I am in contact with, knows what this could possibly feel like. Instead this pregnancy is filled with a lot of happiness from the outside world. As if this will fix everything. It doesn’t. It will not. I know this baby will bring a lot of smiles, but my smiles will always come with tears; for the rest of my life. The pain behind my eyes, will never go away.

I have been trying to plan our second annual Macegiving. You know since last year I banned Thanksgiving at our house. We made our own day and it revolved around your Auntie Macy and doing whatever the hell we wanted. No formal Thanksgiving Day existed. Macy will fly in, just as she did last year to save us from this wretched holiday. Maybe this year, I feel as if I have more to be thankful for, but I still think it is bullshit that I have to sit around a table, without you. Last year, I wore my “Fuck Cancer,” shirt. I shot a bb gun. We ate Chinese Food, let off fireworks and beat the shit out of a piñata. This year will be more of the same but I will cook some pies. I love cooking pies and miss it so much. We will have friends come and go through out the day. Nothing formal or stuffy. No fancy clothes or fake smiles required. No prayers or sitting around a table together saying what it is, we are thankful for. Our day will be tough, as all holidays are, but thankfully we have some great friends to help us get through it. The best fucking friends on the planet.

Poppy is growing like crazy. So is my stomach. Never in my life have I eaten healthier, not because I want to, but because she requires it. I’m a healthy eater anyway, but Little Miss Poppy, has taken it to a whole new level. No meat, not much candy, no fast food, nothing greasy or processed. I’ve been living off of humus, fruit, veggies, some cheese here and there. The other day, I went to a restaurant with Stacy and Fernanda. Fernanda ordered a burger, Stacy the French Dip. “I’ll have the veggie platter, please.” They both looked at me like I was crazy. “WTF? I know! This Poppy only wants really healthy shit!” With all of you boys, I totally remember eating burgers, ice cream, etc… Stuff that you are supposed to enjoy when you are pregnant. Maybe it’s because she is a girl, that I want none of that stuff. I find it funny. I wonder if the second she is born, that I’ll be dying for my meat and candy galore again. Right now, sign me up for the beets, cauliflower, humus, apples, and whatever healthy stuff I can get my hands on. I even went to the movies a couple of weeks ago with Rita and pulled out cauliflower from my purse. It didn’t even seem weird to me until she pointed out that it was totally weird. Your little sister is quirky already and I kind of love it;) She is already taking after me.

Last week I got the news that the trial we funded with Solving Kids’ Cancer for Dr. Mosse at CHOP is a go. We sent our check in and I could not be more proud. Proud of you. Proud of us. Proud of all the people out there, sending us there hard-earned money. A dollar here, a dollar there…. It all adds up. I am so proud to be partnering up with another AMAZING childhood cancer foundation. Believe me, I have researched them ALL. Solving Kids’ Cancer is the best of the best. I cannot wait to collaborate with them for the many more things that we have in the works. Together, we are going to change this game, big time. I kept my word to Dr. Mosse. I said from the very beginning the first thing we funded, would be with her. Although she never treated you, Ronan, she navigated us down this road and at the end of the day was the only person to look me in the eyes and say, “I am so sorry. We as a medical community, have failed you.” Those words, one of the worst things I have ever had to hear, came across not in a sharp and hurtful way, but full of compassion and true sadness. Her eyes were full of the dignity and grace that you deserved and that we as parents, so needed. I believe in the work she is doing. I believe in her as not only a doctor, but a human being. I know what she is doing, will make a difference. I am so happy to support her in any way that we can. Thank you all so much, for making this happen. This would not have happened, without you.

Tonight I went to Chelsea’s Kitchen for a little pow wow of a dinner. I met up with some of our lovies for an impromptu meeting about some things we have in the works. We talked about some foundation things but also some personal things. I have some of my closest girlfriends who want to throw me a baby shower. I’ve been fighting them on it but I know I am not going to win. We sat tonight and talked about how they know the “traditional,” baby shower, won’t fly for me. “Please, I don’t want to sit around, drink punch and open gifts. Please, I don’t want to play the jelly bean game where you guess how many of them are in a baby bottle. Please, I don’t want to have everyone guess how big my belly is with a string. I will throw up and run out of the room if any of that takes place.” Please I just want my Ronan back, too. Can’t I have Ronan and Poppy both? I cannot. At the end of the night the girls came up with some ideas for this very non traditional baby shower which I will know nothing about as I am just showing up. All of their ideas made me laugh and seems very Maya like which means it goes against the norm of everything baby shower required. My anxiety is a lot less now. I am so thankful for the friends I have, who understand that a traditional shower would only send me screaming out of the room, crying. I am thankful for the friends who embrace the me for being me and love me so much. I am thankful that they are still here and were brave enough to never go away, even when I know I was not capable of being a friend to anyone. I am thankful for them loving me and never judging. Because they understand that nobody has the right to judge a grieving mother. It’s because of their gifts that I will forever spend the rest of my life, giving them what I have left. Which at times, may only be a little or it may be a lot. Either way, they do not care. They love me enough to stand by my side to know that when I am ready, I will come back. I feel like I have in a lot of ways. I am so glad they waited for me. I am so glad they never gave up, even after you left Ronan. They are still here and still fighting. That is also because they love you, so very much. I know there was a time in my life when I thought I didn’t need anybody. All I wanted to do, was push everyone away. The friends that are still here are the one’s who never stopped fighting for you, for me, for us, for our family. I will forever be so thankful for them. I now know that I very much needed them all so badly. I would be so sad, if they had gone away which they easily could have done but chose not to do. Thank you to all of you, who are still here. I love you so very much.

Alright little man. I am beat. Poppy is still making me pretty tired. I am dreaming so vividly but still not seeing you which I don’t understand. I talk about you, watch everyone else talk about you, your death seems to be in my dreams all of the time, but never your little face. I would give anything to see it. I think about you all of the time. You would think this would mean I get to see you in my dreams too. I don’t. I hardly ever do. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo