A Very Merry Christmas???

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Ronan.  It’s nights like last night when I really wonder if you can see us.  You know how much I struggle with the whole heaven, white fluffy clouds thing and where exactly you are.  Late at night when I’m writing, I often have your urn sitting in front of me and sometimes I take a picture of it and through my writing tears, send some random message to your Mr. Sparkly Eyes about how wrong this is, how much I miss you, etc… This always leads to the next time I see him, him bringing up the picture as looks at me so intensely and says, “I promise you, those ashes are just ashes, he is always with you, always surrounding you.  I know he never leaves your side.” He says it in such a way that I without a doubt, believe him and truly do think that I am never without you; spiritually that is.  Still, it doesn’t make my pain any less.  So, on nights like last night, if you truly are around me I think to myself, This must be so hard for you to see. We were just having a normal, family night in our kitchen and your daddy and Quinn had just returned from playing basketball at The Village. Poppy was sound asleep and we were chatting away.  Liam came walking into the kitchen, visibly upset.  I asked him what was wrong.  He just stood there, fighting back his tears, trying to be so brave and strong but he couldn’t continue to hold anymore of his emotions in.  Your daddy grabbed him as he choked out the words, “I miss Ronan.”  This led me to stop what I was doing, which was busily cleaning up the kitchen as I watched your daddy hold Liam as he buried his head into his chest.  I surveyed the room and we all looked so… helpless.  Quinn was sitting at the kitchen table, and he kept looking down as if he didn’t know what to do.  Your daddy was holding in all the screams and cries that I knew he wanted so badly to let out.  Liam was sobbing.  I grabbed something and threw it as hard as I fucking could at the wall.  I then went over and grabbed Quinn and held him. I told Liam that he needed to get his feelings out, how that it is all too much to keep in.  I asked him to elaborate on the “I miss Ronan.” He told us how he misses playing with you and just wants to see you again. I could say nothing except for I was so sorry and I would give anything to bring you back. We talked about the importance of sharing our pain and our feelings.  Your daddy told Liam how sometimes he parks his car before going into a court appearance and just screams at the top of his lungs.  I told your brothers how I pretty much cry everyday still and that it’s o.k. to still be so sad that you got sick and cancer stole you away.  Your daddy reassured your brothers that we as a family are safe and will always be together. I took Liam and we went and snuggled on top of his bunk bed where he cried some more.  It was a rough night for everyone and Liam asked to see Dr. Rachel again so I made him an appointment.  I am so proud of him for knowing when to ask to see her and not being ashamed or afraid of it.  I started this post a while back, Ro.  We are doing alright and some really wonderful things have been happening, all because of you of course.

I really don’t even know what to say about all the beautiful things that keep happening except for I continue to be blown away by people’s beautiful hearts and the way they just want to do good things in the world, while expecting nothing in return.  Last week was one of those really, really amazing days.  The kind of amazing day that after it is all over, I can do nothing but bury myself in my bed and sob like a grieving mother who just lost her child, all over again.  It all started with a normal, “let’s collect toys for Ronan’s Candy Cart to take to the kids at PCH on the oncology floor.”  And you all were amazing to donate so many awesome things.  My friends, Katie and E, started collecting toys as well at their stores.  I was all set to go to PCH on Wednesday, but then my friend sent me a little text message. Her text said that her friend, Adrian Wilson, who is an NFL player, wanted to help with the candy/toy cart and was wondering if he could go to PCH with us on Thursday to deliver some things. I was of course over the moon about this so I sent an email over to PCH to ask if the day could be changed to accommodate Adrian’s schedule.  They were more than happy to do so for us.

I met E at Toys-R-Us this morning and a shopping we went.  I let E tackle the girl things as she has 3 of them and I took on the boy things as I don’t know a lot about the girl world of toys, just quite yet. Poppy is slowly teaching me but as of now, she is most interested in my car keys and anything else she an chew on like the teething little babe that she is. We loaded up cart after cart after cart… about 20 of them, packed full of the most amazing toys possible.  I made sure to grab a ton of Star Wars stuff and just about fell over when I found the Clone Trooper that stood about 3 feet tall.  Hot tears splashed down my cheeks as I grabbed him and told Poppy to move over for her new friend.  Ronan would have loved him was all I could think in my head.  As it came time to checkout, I helped to bag up the toys while E stood over the cash register with the biggest smile on her face.  I swear I saw freaking rainbows, fairies, and mother fucking unicorns flying over her head as it was that magical of a moment.  Adrian had offered to pay for EVERYTHING.  I was doing such a great job at keeping my shit together but then some random lady stopped me and said, “Are you the one doing this amazing thing for the hospital?” I told her I wasn’t, that it was NFL player Adrian Wilson and I was just lucky enough to be a part of his generosity. Well, I almost got all of those words out before the tears started splashing all over the Toys-R-Us floor.  There was no keeping my composure over this act of kindness at all- it was just too bittersweet and beautiful.  On my way to PCH, I called your Nana, sobbing.  I told her what I was doing, who it was that was this amazing thing and how sad I was that you were not here to see any of it or be a part of it.  We talked for a few minutes before I hung up and officially had to pull it together before stepping foot on the hospital floor.  We loaded all the toys into wagons, went and met Adrian at the front of the hospital and off we went to the 7th floor of PCH.  We were there for about 2 hours and everyone was so excited to see us and even more excited that Adrian had taken the time to come and do such a kind thing.  We got to go into most of the rooms and Adrian was so sweet and kind, offering pictures and autographs to all the kids and even their parents.  There were a lot of older kids on the floor who were sweet about all the dolls and toys that we brought, but were not really that in toys as many of them were older teens.  Adrian took care of that problem by getting their shoe sizes and told them the next day, we would deliver Jordan’s and Van’s to them from his sneaker store, High Point.  How crazy generous was that?  He stayed true to his word and the next day I met E at his store and we pimped those kids out with not only new shoes, but hoodies, stocking hats, socks, and watches, etc… Poppy and I dropped everything off and got the nicest phone call a few hours later about how excited the kids all were.  It felt so nice to be able to know that we were a part of making those kids smile for at least a few hours.  Adrian Wilson will forever go down as a hero in my book and I will forever be grateful that I was able to be a part of it.

I had a really hard time on Christmas Eve.  I picked your daddy up at the airport and was a total mess.  We ended up going into town to finish  up some last minute things and all I could really do was sob in the car while he tried to have some what of a conversation with me.  “Who is coming up to your parent’s tonight?” he asked me at one point.  I named out, “X, Y, and Z… and not Ronan!!!” I was sobbing, panicking, and not really breathing very well.  At some point while he was in a store that I could not go into because of my grieving mother of madness appearance, I got on my phone and started distracting myself with my Instagram feed.  The first thing that popped up was Taylor’s account as I guess she had just posted a new picture.  Through my red, swollen eyes I looked at the picture of her and her brother, in their matching Christmas pajama’s. Talk about adorable. Upon closer inspection I saw she was wearing something on her head.  It wasn’t just something, it was your Spicy Monkey Spirit Hood that I sent her.  I smiled though my tears and as your daddy got in the car I showed him the picture.  “Look, Taylor is wearing Ro’s hood.” He squeezed my hand and said something about how that had to make me feel a little bit better.  I told him it did and the timing of seeing that picture could not have been better.  It came just when I needed it most. To me such a simple thing served as a little reminder that there is so much good in this world, even during the hardest of times.  It also gave me that little extra push I needed to get through the rest of the day and night because Liam, Quinn and Poppy deserved to have a beautiful Christmas, Ronan, despite the always empty chair at the dinner table that will never be filled.  Thank you, sweet Taylor.  You make the most beautiful little spicy monkey and you have no idea how much seeing that smile on your face meant to me.  I hope you and your family had the most beautiful Christmas. I love you so much.

Christmas is over and we all survived.  I went out in the early morning before everyone got up to have some time to myself.  I talked to your Sparkly before I had to face the reality of you were not coming downstairs to unwrap the gifts we had bought for you.  He was working on Christmas of course and I gave him my best, “Are you busy saving the world today,” before I decided to sit on the phone and let him talk me through my tears.  I pulled over and listened as he did his best little pep talk which mostly consisted of “I’m so sorry and you know there is no good reason for this… Ro should be here with you.” I told him I knew, I loved him and thanked him for calling me as I knew his words would help carry me through the rest of the day like they always seem to do. They did and I let myself get as lost as I could in your brothers and that Poppy girl.  Watching them and seeing the smiles on their faces made Christmas some what bearable this year.  Poppy’s energy seems to be infectious to us all in such a good, positive way.  Thank you so much for her, Ronan.

It is good that we are away in Washington State for Christmas.  I was really needing a break from the never-ending sunshiny state that sometimes drains my soul.  I don’t think I can ever spend a Christmas in Arizona again.  I mean, of course I would if Liam and Quinn wanted it that way, but they are always so excited to come here.  Here it is dark, damp, dreary, and I can run for miles while getting lost the thickness of the fog that forever feels like home.  Here, I can breathe and I don’t have to constantly be wearing sunglasses to hide my tear soaked eyes.  Here, it just looks like my face is covered in the raindrops that are spilling down from the sky but we both know the truth, right Ro? And here that truth feels o.k. I’ve missed this place so much.

Sorry for the massively long update of everything and nothing. So much more to say, so sad I haven’t been writing, but I promise to get back to this once my book is finished.  I love you.  I miss you.  I hope you are safe.  Sweet dreams, little man.

xoxo

P.S. A HUGE thank you to Adrian Wilson again for the beautiful thing you did.  You are the definition of a beautiful soul.  Now, if only we could get that NFL to go GOLD for all the kids during the month of September…

P.P.S- Tyler Knott, you are the bees knees. Now please marry Ally. Thanks so much.

 

 

Thank you all for your amazing hearts and spicy souls.

 

 

 

 

 

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Because of you all, the Spicy Monkey Spirit Hood was the company’s largest launch that they have ever had. Thank you all so much for buying them and making this venture so successful. Please continue to share this video with anyone and everyone. The more people who see it, the better. I love you all so much.

xx

 

 

http://vimeo.com/78844347

Spirit Hoods are back in stock!

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Spicy Monkey Spirit Hoods are back in stock as of 3pm pacific time. The first run sold out in barely 90 minutes, so if you want one…don’t wait! Even if you don’t have kids, or want to wear one yourself, DONATE one or 10 to a children’s hospital. Bald little babes everywhere, should have one of these.
http://theden.spirithoods.com/ronanthompson/

We have to thank Alexander and Shayoon and everyone else at Spirit Hoods for this incredible experience! Seeing how enthusiastic and supportive everyone has been about the spicy monkey hood reminds us of how Ronan would have been so beyond excited to see it. Thank you all so, so much. This is honestly a dream come true.

I happen to like 3 a.m.

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Ronan. If I don’t write to you tonight, my head might explode. Today was one of those days where I cannot fall asleep because my head is spinning. There is so much going on here, that I can’t even see straight. What have I been doing? Running around like a chicken with its head cut off. September is right around the corner and we have so much going on and coming up that I don’t even know where to start, so I’m going to start somewhere completely random. Your brothers started school last week. Did I already tell you that in an earlier post? I cannot remember. They started the 4th grade. I can’t even believe that as the time has gone by so fast with those two. Of course, on their first day of school, I dropped them off and sat and watched them as they walked into school together, from my car. My heart broke into thousands of pieces not getting you to watch you walk into school with them. Would have it been kindergarten or first grade for you? Not sure, because of your almost summer birthday. If you would have survived cancer, I’ll bet we would have waited to start you in kindergarten until this year, so you would have been on the older side. I never thought I would be begging for the side effects of treatment from you cancer, but I would have given anything for those problems instead of having you just dead.

Just as I was sitting there, watching your brothers, I saw an old mom friend of mine, walking her little boy into school. An old ghost mommy friend as I like to call them, because at one time they existed, or did they? Sometimes I think they may have been just a figment of my imagination.

Crap. I know that lady, I thought to myself as I watched her walk her new kindergartener into the school. But I can’t place how I know her. Did I know her from my time with Liam and Quinn when they were at their preschool or did I know her from when you were there? Was she a Liam and Quinn kind of mommy friend or and Ronan kind of mommy friend? A ghostly past of my preschool mommy friends who went away after you got sick and died and who never looked back, or did I only know her during my blissfully happy days when I lived in happy land and childhood cancer did not exist. I run into those ghosts of my mommy past sometimes. Some days, I run screaming the other way. Some days, I smile and pretend like everything is o.k. or like my feelings are not hurt at all for the friendships I thought I had, but it turns out it was not as true as I had once thought in my mind. At the end of the day, I’m o.k. with it all though. The Fernanda’s, Stacy’s, Macy’s, and Mandy’s make everything more than o.k. in that department and I know, the one’s that stuck and fought for me and you… well, I am SO beyond lucky to have them as they rock my world every fucking day.

This week has been the kind of week where I am saying yes to everything that is thrown my way. Yes to the Gold Weekend in September.  Yes to the Spirithoods founder wanting to come out here to meet us and film a documentary next week.  Yes to helping Jim Fry drum up some press for his crazy kick ass bike ride through the Pyrenees. Yes to the interview where I will be featured once again in the Phoenix Magazines Movers and Shakers of the Valley. Yes to Liam and Quinn I am super mommy and can take on the world while helping you with your massive amounts of homework and whatever else you need. Yes to everything Poppy, of course. Yes to running on my very bummed out hurt knee that I obviously did something to over the summer, but I am choosing to ignore it because as I told Woody tonight, “If Ronan can go through cancer treatments, I can run on a fucking hurt knee.” Yes to everything while still making time to write this book which leaves me with little time to sleep or eat for that matter.

I can’t sleep and the whole eating thing is just getting in the way of what I am doing, so I’ve decided to take a break from that as well. I work best on fumes, anyway. Will I crack, will I break, will I have a massive super meltdown? I really hope not until after at least September. I’ve got too much to do as of now.

I’m also a little sad this week due to more than just your death. Remember that crazy ass stalker, Mandy Bee who swooped into my life like a Tasmanian devil? Who never claimed to be anything but a crazy stalker who just wanted to be my friend and who did things like drop off candy and leg warmers at my front door until I could not longer say no to becoming friends with her? What can I say, she learned my weaknesses early on. I mean candy AND leg warmers? I didn’t stand a chance. So, I let her into my life sometimes just a little and sometimes a lot. Sometimes I felt overwhelmed with amount of love she wanted to shower me with, so I would pull back a little. I often didn’t feel like I was worthy of the love she was wanting to give me.  Well, that crazy ass bitch moved right down the street and right when I was starting to become just as obsessed with her, as she is with me, she pulled the rug out from underneath me and is moving back to Canada. WTH, Ronan? That is not being a very good stalker, if you ask me. Mandy has become my side kick, my partner in crime and I’ve gotten really used to having her around. I am kind of heartbroken. I was texting about Mandy moving back to Canada with Stacy the other night. She said to me, “You know, all Mandy every wanted from you was your friendship. Nothing else.” I know this. It was never a friendship built on, I’ll scratch your back if you scratch mine. It was always, I’m going to scratch your back, even if you don’t let me, I’m going to do it anyway, while jumping out of a plane and skydiving with you. Mandy never had alternative motive. The day I met her, she announced she was fucking crazy and never pretended to be anything but that. I’ve gotten quite used to that crazy and I love it. So yeah, I’m a little more than sad about it but once you are sisters in this world, you are sister for life. I know she won’t ever be too far away and she will be back her often, which will help to soften the blow just a little. I’m still super sad about it though and I really think the whole situation, sucks balls.

Poppy, Poppy, Poppy. Somebody today asked me if we had started up “Mommy and Baby” classes yet. I looked dumbfounded and said, “Uhhhh, no. Unless you count taking her to every single foundation meeting with me as mommy and baby time.” Crap. Aren’t I supposed to be starting music classes with her or something like that to get her “socialized?” I’m sure that’s what I was up to when I had you, Liam and Quinn at this age. Maybe 4 months is a little early, but I’m sure I was doing it at around 6 months. Whatever. We do take music classes every day and they are called Taylor Swift is rad. We sing and dance to her songs and Poppy likes it best when I lull her to sleep with them. Those classes with just the two of us are better than anything I could ever pay for.

Alright, little man. This is all for tonight. I’ve got to try to turn my brain off. I miss you. I love you. I hope you are safe. G’nite, baby boy.

xoxo

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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4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

The Twilight Zone

Ronan. Can you give me a reason to get out of bed today? Because I cannot find one. I’m still waiting for you to come and wake me up and tell me to make your extra cheesy eggies. I’m still waiting for you to ask me to put on “Mickey Mouse,” for you and sit on the couch and watch it with you. I’m still waiting and until you come back, I don’t know how I am going to function. The truth is, I don’t want to function and I don’t want life to go on. Life for me has completely stopped and that is apparent in the way that each day and night without you drags on and on and on. I’m trying to be productive. I really am, but it’s torture. Last night, I tried my best to be a really good mom to your brothers. They are so sad that the amount of energy I have to pour into being around them and making them happy is exhausting. I will forever be working extra hard to fill your void. That is a lot of work for a mommy. I never realized how much of a helper you were to me with your brothers. You filled them with all the happiness in the world and now that you are gone, I have to try to fill your shoes. It is not an easy job. They had Luca stay the night and Tricia and Macy came over. We piled in the car and took the 3 boys for Fo Yo. The boys giggled the entire way there. You would have loved it. All 3 of them sat in the very back, Macy sat in the seat in front of them and Tricia sat by me in the passenger side of the car. Your seat was empty. I saved it for you. Macy, Tricia and I wore our Spirit Hoods out last night just for you. It was silly fun and I needed the laughs. I can always count on those when your Auntie Macy is around.

I sat outside with those two girls and we cuddled on the couch and talked about you. I showed them the video of you on my phone from San Francisco when you were at the airport and you were yelling “Bye Macy!” to her. She hadn’t seen it yet. We cried. I showed them the last picture I took of us on Mother’s Day. You didn’t even look like yourself baby. Your daddy asked me to delete it but I’m not going to. I’ll keep it forever even though that s not the way I want to remember you. I know it won’t be, but I still need to keep that picture.

Ro~ I have no idea when I started that post above. All I know is it’s now a Saturday night. And the only way I know that is because tomorrow is the day that I am hoping really will not come. Tomorrow, is the day that I think your obituary comes out in the paper and I think it’s the day we have your services. I don’t know how I am going to survive tomorrow. I’ve already asked Fernanda to find my twin in life, so I don’t have to go. She told me that you would not like that; that you would know it wasn’t me there. I disagree. I think you would like it because you always liked how we used to break the rules together. It was one of our favorite things in the world.

I still cannot believe you are gone. I wonder if I will ever believe it.  This has got to be an episode of “The Twilight Zone.” Everything that goes on in our new world without you doesn’t make any sense at all. I’ am so mad. The one thing about all of this that nobody tells you about losing a child is how slowly time passes afterwords. I swear I don’t know how I’m going to get through life if it continues to be this way. It is so slow that it is painful. I hid in my bed almost the entire day today. I know it’s not how you would want me to be, but I cannot help it. I care about nothing. This is such an awful thing to say, but I don’t even want to be a mom anymore.  And that is my most favorite thing in the world. Everything takes so much energy now. Trying to fill the void that you have left behind is impossible but I have to continue to try to fill it for your brothers sake. Especially Quinn’s. He is wandering around like a lost little puppy. It makes me so sad, and I am trying my hardest to shower him with anything I have left; but it is not much and I know he feels it. He is stuck to me like glue. You would think this would satisfy me and fill me up, to feel all of the love he has for me. It doesn’t. I feel like I am in the bottom of a hole in the ground, looking up at the bright sky and trying to climb my way up and out of the hole. I feel like I’m going to suffocate 24 hours a day. I feel like this is never going to get any better.

All I want to do is sleep because at least in my sleep I get to see you. Even though the dreams I have of you are not happy dreams yet. I mostly dream about you dying. I wonder if this is part of the process. There has to be some psychology behind this. I hope to someday have sweet dreams about you. I miss you, Ro. I miss you every second of everyday. I would give anything to kiss your little lips again. To hold your little hand and look into your big blue eyes.

Your daddy asks me all the time if I need anything. You know what my response is? “Ronan.” I can’t help it. Your name just slips out of my mouth without me even thinking about it. I know he wants you just as badly. He hurts too. But even he admitted to me today that he knows that he doesn’t hurt as much as I do. He gets the whole mother and son thing. He is such an amazing man, that daddy of yours. I am trying to be strong for him and he keeps telling me what a great job I am doing, but I know I am not. But he tells me this anyway. He tells me this as he lets me sleep the day away and takes care of the house, the errands, the chores, your brothers, and his work. I am pretty much useless right now. I hope someday I can make this up to him. I hope someday I can go back to being a productive person of society. I’m not even existing. I’m barley breathing.

I don’t want tomorrow to come. I’m expecting it to be like an out-of-body experience. I told Tricia tonight just to physically get me to your service tomorrow is going to be an ordeal. I have a vision of running away and never coming back. I couldn’t do that to you though. I have to keep my head on somewhat straight for your brothers too. I refuse to fuck up their lives. I have to keep reminding myself that there are other people involved in all of this. I have to keep reminding myself not to be selfish but that is all I really want. Is to be selfish about losing you and to pretend like I am the only one hurting. I know that’s not the case. The sadness that exudes from the others around me is very apparent. It is so very hard for me to see as I only want to make everyone feel better and comfort those around me.

Tonight, my besties from high school all came in. I had them over to our house. Everyone was so sad and I was having such a hard time as I don’t know what else to do with everyone else’s sadness. So what did I do, you may ask? I know you saw me and watched us. I insisted that your daddy hook up Rock Band so we could play it. Otherwise, I’m sure we all would have wound up in my bed crying like babies and that was something I could not handle. Rock Band was a great distraction and I even broke out all of our wigs that we used to wear for it. There were some laughs and your crazy Aunt Macy is an amazing singer! She stole the show. Quinn played the guitar and kept getting amazing scores of 97%. He was so cute. Liam attempted the drums, but was soon not so into it so he ran off to play something else. All of the girls left to go back to their hotel and I will see them tomorrow. I’m so happy they are here, but so sad it is for this reason.

As we speak, Macy, Tricia, your Daddy, Uncle Jay, and Kenny are out in the livingroom playing Rock Band, again. I am snuggled in bed with Quinn and Liam is sleeping with Papa Jim. Nana is in your room, (a.k.a. the hot lava room). I’m tired tonight but restless as well. I wonder what you are doing wherever you are. I sit and think crazy things about how you watch me and are just trying to get back to me. Is it torture up there for you too because all you want is to be back with me?? This all seems like a fucking lose lose situation to me. How could you be happy like I want you to be when we are apart?? Nobody knows the answers so I have no choice but to try to figure them out myself. I’m just going to let you be my little guide. I promised you I’d never let go of your hand and you know I don’t break my promises.

I’m getting sleepy now. If you visit me tonight, in my dreams….. please no more scary ones like I’ve been having. Let’s take a trip to the beach together or something else. I don’t want to see you dead in a stroller in my bathroom. But you know what, if that’s the only way I get to see you, I’ll take it. It’s better than not seeing you at all. I love you, Ronan. To the moon and back forever and ever. Sweet dreams, baby boy.

xoxo

Ladies and Gentleman….. we have an ANC!

Finally! Ronan’s little immune system is coming back. It was only at 200 today, but it if finally making an appearance. I was starting to get really worried and frustrated. This can only mean good things to come… it means Ronan will more than likely be able to get out of this hospital soon and enjoy some freedom. They are not giving me a discharge date yet… but I am pushing for tomorrow. I have not heard what time his scans will be tomorrow and am waiting to speak with one of the doctors. I am trying not to get too nervous… but these scans have to show us good news so we can figure out what our next step is as far as Ronan’s treatment goes.

We have played non-stop today. It was a big arts and crafts day in our room. I went on a hunt and found us everything I could find to let us make a mess and have some fun in our room. We got messy with glue, paints, markers, stickers. We have been up and about a lot and I even got our nurse to unhook Ronan from his “asspole,” for about 20 minutes so we could run around crazy in the halls. He was so excited to be unhooked and kept telling me it was the best day ever. He is going to be so happy when we finally get out of here.

Liam, Quinn, and Woody are on a plane as we speak. They are landing around 8:00 tonight. It will be so nice to have them here and to all be together. The plan is for them to come to the hospital, sneak in a quick visit with Ronan, and I will take the boys back to the RMH and Woody will stay the night here. I am thinking this is a good idea as I have not been out of the hospital in 48 hours and I am starting the freak out a bit. I need fresh air, I need a shower, I need a full night of sleep. It will be good to spend some time with the twins too. It kills me how much I miss them.

I am waiting to talk to one of the doctors on the floor. I asked our nurse about the scans and she said that they had changed them until next week. 5.4.3.2.1- Remain calm. I told asked her to please get a doctor in here as we were not  told about these changes. I also explained to her that Woody was flying in tonight just so he could be here on scan week, which we were told would be tomorrow and Wednesday. After speaking with the on call doctor, she told me that “The Team,” met tonight and decided that they wanted Ronan’s counts to come up some more before doing the scans. Especially since they are doing a bone marrow test. They want his bone marrow to recover more before they go in and test it. I understand fully, but it still is frustrating. But it’s not in our hands so we once again will just have to roll with it. If his counts keep coming up we will do the scans at the end of the week. If not, next week will have to do. It will be fine either way. Woody and the boys are leaving on Sunday but Fernanda will be here Monday-Friday so she can be with me. So thankful for the amazing friends surrounding me and helping me through this. I can’t wait to see her and cannot believe she is leaving her 5 kids to be with me. The thought alone is enough to make me burst into tears. So.Very.Blessed.

Woody and the boys arrived safe and sound. They came directly to Sloan and Ronan and I sat in the lobby and waited for them in front of the elevators. He was so excited to see his brothers and Daddy. It was a quick reunion, as Liam and Quinn are not allowed on the floor. I grabbed my things, kissed Woo and Ro goodnight, and headed out for some much-needed fresh air and time with my favorite twins. We dropped our bags off at the RMH and then I took them to get something to eat. I was worried that Delizia’s was going to be closed, as it was already 11 p.m. I was happy to find out they stay open until 1 a.m. My kind of place. I sat with my two boys and listened as they chatted away. They had so much to say tonight and I was in heaven. I had my usual soup and they both chowed down on pizza. While we were in the middle of dinner, I had remembered that I forget to leave Woody saline solution for his contact lenses. I texted him to ask if he needed his things and he said he did and that he was hungry as well. I told him that I would bring him his things and pizza. The boys and I gathered up our things and went back down to Sloan to drop everything off to Woody and Ro. We had such a good time on our rainy and windy walk there. No complaints at all from my little men who were beyond tired; they were just happy to be with me. I so felt the love tonight. I love my Liam and Quinn so much. I miss them so much when I am away for so long. This is going to be a good week. Quinn was so excited talking all about New York Miss Macy coming into town. Liam goes, “Who’s Macy?” Quinn’s response was adorable. He goes, “You don’t know who Macy is?! I can’t believe you don’t know who Macy is. She’s one of mom’s funnest friends.” I was dying at his response. It’s like Macy is a celebrity in his eyes and everyone should know her. Beyond adorable. I can’t wait to spend some time with her this weekend with my boys. Wooddawg is excited too. Spirit Hoods will reunite!!

I’m all tapped out tonight and I’ve got Quinn in bed sound asleep beside me. Liam is in the bed next to us passed out as well. It’s pouring down rain here and that is my favorite thing in the world to fall asleep to. Hoping for some peaceful dreams tonight and to get a full nights sleep. We shall see. Sweetest dreams to you all. Have a beautiful day tomorrow. Love you. Go Ronan’s ANC!!!!

xoxo

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!