A Happy Birthday to your most amazing brothers.

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Ronan. Our little, Rachel went back to NYC this morning and I hated to see her go. We had the best time with her here and she is another one of those big reasons that I am so thankful for this blog. Without it, I may have never known this amazing soul who I’m sure was my little sister in a past life or something. Somehow or somewhere, we have crossed paths before. There is just no other way to explain the bond and connection we have. Never in my life have I met a more centered and beautiful 21-year-old in my life. Rachel is everything I hope Poppy grows up to be. She is brilliant beyond measures, mature, wise, compassionate, polite, sassy, hard working, loving, funny, strong, independent, adventurous, and truly knows how to stand her ground in this crazy world. I can’t wait to watch all she does in this life as I know she is going to change the world.

After I got home from taking her to the airport this morning I walked into your brothers room to find your daddy, Liam, Quinn, and Poppy. Your daddy goes, “Did you get Rachel off o.k?” I told him I did. He then goes, “That’s sad.” I said, “What’s sad?” He said, “I know you’re sad that she had to go. I wish she could have stayed longer, too. She was a great house guest.” I just smiled and said that it was o.k. Although in my mind I was wishing she could move in and stay with us forever. Your bed looked so much more happy with her in it. I’ll never forget the first time I met Rachel and I don’t really even remember how it came about except for she had been reading my blog and knew I was coming to New York City, alone to take a little time for myself. Somehow it turned into, “Want to meet up?” And of course I said yes because I just had a feeling about this girl. I am so glad I took a leap of faith and a chance and opened up my heart when it was so broken. My little, has helped me in ways she will never know. It’s people like Rachel that make living this life a little easier because she brings such beauty to it. Even though she may have tried to hide Poppy in her purse and take her to New York with her;) Don’t worry, little. We’ll come visit you soon. We are missing you so much already.

The 9th came and went. It was an o.k. day. We didn’t do anything dangerous. Instead Rach helped me get organized around the house. We cleaned out drawers, organized closets and dressers, we loved on Poppy and your brothers. We met up with Fernanda and Stacy for dinner where I got to sit and talk with my friends while Poppy slept away in their arms. It was a good way to spend the 9th. For once, I didn’t have the desire to jump out of an airplane without a parachute. Your brothers birthday was the next day. 10 years old, Ronan. I don’t even know how that happened. I woke up and made them a big breakfast before basketball camp. We opened up gifts and they were so excited, happy, and thankful. After camp we spent the rest of the day playing with Fernanda and her kids for the majority of the day. I broke down about halfway through the day as I had done all I could do. I tried my best to be the strong and happy mom for most of the day but there came a point when I couldn’t stomach the fact that you were not here with us to celebrate and the tears just started pouring. There was no controlling them so I just let them fall. I was back in Fernanda’s bedroom with one of her boys who is so in love with Poppy that he just wanted to hold her all day long. I was sitting quietly with him and we were whispering back and forth to each other about Poppy. There was something about seeing him holding her and the way he was looking at her that reminded me so much of you. I think it was the look in his eyes as they were filled with so much love, happiness, and peace. It’s the way I know you would have stared at her, too. Brando kills me anyway as I totally have such a soft spot for that kid. He is only a couple of years older than you. Right after you died, I remember being at Fernanda’s house and I was back in the boys’ room. Brando just looked at me and said, “I’m sorry about Ronan.” I was speechless as I think he was only about 6 when this happened and I remember thinking to myself, “I don’t care how little this boy is, he gets it.” I’ll never forget that moment with him and how much it meant to me. I’m a sucker for all of her kids, but Brando always seems to tug at my heart just a little more. While I was crying on the bed with Brando and Poppy, Brando looked at me and said, “Are you o.k.?” I just nodded my head that I was, even though I really was not. I tried to stop the tears, but it didn’t work and Rach and Fernanda came into the room to find me silently sobbing. My tears lasted a majority of the day. I just wanted  you with us, running about the way you should have been with your big brothers on their 10th birthday.

We ended the night with messy, messy, ice cream cake, singing Happy Birthday and lighting off fireworks that we acted like weren’t supposed to be lit off. As we were jumping and dancing about I heard our little Rachel yell to Quinn, “Rules were meant to be broken, Quinny!” I laughed out loud. Indeed they are, little which is another reason I love you so much. Ronan, you would have loved the boys’ birthday so much. I hope you were there watching us and cracking up at the things we did and you could see even through my tears, I can smile and laugh, too. The night ended by tucking our little in as I sat with her and talked about life, love, loss, and the people we choose to surround ourselves with. I told her how I’ve learned some lessons along the way about the people that have floated in and out of my life. How you, Ronan, are the root of all things good, beautiful, and pure and as long as I remember that I think I will be able to continue to do things that will make you proud. I’m not here to deal with drama. I’m not here to deal with BS. I’m going to live this life the way I want to live it, not the way other people think I should. At one point I was talking to Rach about Stacy and I was telling her how we met, how long we’ve known each other, how we lost touch after our husbands graduated law school together and how we had made plans to meet up after a few years had passed and how we were supposed to go to dinner on the night you were diagnosed. I tole Rach from that moment on, how Stace swooped in and her and Fernanda took charge of everything. How we may have had our bumps along the way, but at the end of the day I always know Stacy never forgets why it is she is here, doing what she is doing. She never forgets this is all for you and because of you. Screw me. I’ll say screw me all day long as I’m not the one who matters in all of this. It’s you. I get told a lot how strong I am, how inspirational, etc… You know what I say to all of that? I’m not any of those things, but you are Ronan. I am just simply here, trying to make you proud by doing the things I know you would want done. You were the strong one. You were the brave one. I was just simply lucky enough to be your mom.

After my pow wow with Rachel, I went to kiss your brothers good night. Quinn wanted to snuggle Poppy so we got into bed with him. We all said our goodnights. I told your brothers how lucky I am to have them and how I hope they know how much I love them and am proud of them. This is what Quinn said. “Goodnight mom, Goodnight Liam, Goodnight Poppy, Goodnight Ro. I love you. I wish you were here.”

Always, Ronan. We always wish you were here.

I love you, baby doll. I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you to all of you who reached out to me about the cable for The Ronald McDonald House. We’ve got some amazing people helping us out and I am crossing my fingers that something can be done. I know it may seem like such a silly thing to some because we are lucky enough to have the basic things in this world like clean water, food, etc… But trust me, when your child is neutropenic and cannot do a thing except watch Mickey Mouse Club House and the parents are so beat down from all they are going through, a little thing like that can really help one get through the day. Again, thank you all. You truly are angels on this earth.

 

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All I want in life is a cure for childhood cancer and to be glitter bombed.

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Ronan. Hello May and hello constant stream of tears. Also, hello my little shadow, aka, Quinn who seems to be busting me whenever I am a bloody mess. It’s happened twice this week. Both times he caught me crying, in Poppy’s room.

“What’s wrong mom? Why are you sad?”

I wiped my face and just told him I had a hard day and was missing you a lot.

“It’s o.k. that I’m sad about Ronan, right Quinn? I’m allowed. It doesn’t mean I’m not going to be o.k., I’m just really sad today.”

Quinn shook his head. “I love you, Mom. Can I get you anything?”

I shook my head no.

“O.k. well, I love you so much.

“I love you more, buddy. Thank you for checking on me.”

That was a couple of days ago. Tonight, the same thing happened. Everyone was out except for me and your Poppy sister. I guess I kind of lost it, mid rocking her and some how I ended up on my computer, watching old videos of you. Hospital videos. “I love you, mama.” You told me this at least 5 times in a 4:32 minute segment. We went back and forth. “I love you, Ronan. I’m so proud of you.” “Mama, you my best friend.” On and on it went, your squeaky little voice over and over as we went through a book of animals. “What’s this mama?” “A dolphin, baby.” “Will it bite me, mama?” “No, monkey. Dolphins are nice.” “Dolphins are nice,” you repeated.

I slammed my computer shut after that as I held your sister and sobbed. I took her into your room and rocked her as I cried some more. Everyone came home soon after that. Quinn found me in your dark room, rocking Poppy. He saw my red blotchy face.

“What’s wrong, mom? Are you sad?”

“Yes, baby. Just a little sad tonight.”

“Do you need anything, mom? Can I take Poppy?”

“No thank you. I will be alright.”

“Please mom. I don’t mind taking Poppy. I really like holding her.”

“O.k. Quinn. Thanks for helping me. I love you so much.”

I handed Poppy to your brother and watched as he snuggled up on your bed with her and I begged in my head for you to please come back.

I went to wash my face and your daddy had no clue that I had been crying, until he saw my face.

“What’s wrong? Why won’t you look at me? Who upset you today?”

I told him, today, nobody. Tomorrow might be a different story as I swear to god I am dealing with a bunch of petty bullshit again.

“I’m just sad. For the same reason I’m always sad.”

Your daddy said he knew because he has been feeling the same way.

It’s that time of year again. It’s that very, very hard month where our emotions seem to be all over the place. Even the girls at my nail salon know it. My sweet Emily who used to paint your toes, Ronan, remembers what is coming up.

“It almost 2 years, Maya.” she said to me in her very broken english tonight as she rubbed my arm.

“I remember. I think to myself, it almost 2 years. I sorry,” she said.

I said I couldn’t believe she remembered. I thanked her for remembering.

“I sorry I make you sad,” Emily said.

“Oh, Em. You can’t make me sad, I’m always sad.” I said as I somehow held back the tears. I couldn’t tell if they were tears from being sad over you or so touched by the fact that Emily remembered that your 2 years Deathiversary is coming up.

“Purple sparkles, right Maya? Always sparkles.” Emily said as she filed my nails.

“Yes. Purple sparkles for Ro. Always for Ro.”

Today was one of those good day foundation wise though. I got a very wonderful phone call in regards to some things we are going to be working on with one of our celebrity friends. For now, I’m going to keep things on the down low, until we are ready to announce what it is that we are going to be doing. I’ve been quietly working on things while adjusting to Poppy life. I’ve been trying to find that balance of, “Hey I can do it all! But hey, I also really can’t because I have a new baby!” Between Poppy, your brothers, foundation things, our book… well, it’s a lot. But nobody loves a challenge more than me so I’m happy to be wearing all the hats that I am. There are too many kids dying to slow down now, or ever.

Alright little man. This is all the update I can write for tonight. When Poppy sleeps, I must sleep. Or so they say.

G’nite. Sweet dreams. I miss you. I love you. I hope you are safe.

xoxo

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“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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Baseball, Brisket and Marriage Equality for all!

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Ronan. I think time is standing still. At least that’s how it feels to me. Maybe it’s because I’m having to take things easy now that your Poppy sister is almost here. Maybe it’s grief. Or a combination of both. I remember things feeling this way right after you passed away for the first 6 months or so. It feels like this once again. I wake up, do the things I need to do, but life feels really empty right now. Nothing feels good. I’m exhausted. I can hardly make it through the day and normal things like keeping up on the laundry, dishes, and feeding your sweet brothers, feels really, really hard. I’m sure this mostly has to do with my pregnancy coming to an end but still, it’s mentally wearing me down. Then there is still the issue with your bedroom. Fucking fuck fuck fuck. I can’t believe it really happened and all of your things are out of there, being cleaned, refinished, your clothes are in bins, your stuffed animals in bags. I still am in shock over it all. I never thought I would let that day happen. Your daddy asked what I wanted to do with the clothes in your closet. I made him leave them there. I still like to touch them and smell them, even though they smell nothing like your sweet little scent. I still take whiffs of them whenever I can, hoping to be reminded of a sweet memory of when they were last worn by you.

I saw Dr. Schwartz today. Everything is progressing well, but I seriously feel like this pregnancy is never going to come to an end. I have it in my head that Poppy is just going to stay inside of me forever as I sometimes still do not think she is real. I honestly don’t think I will fully be able to truly absorb what is happening until I have her in my arms. We talked about everything from Cord Blood Banking, postpartum depression to the whooping-cough vaccine she made your daddy get today. She told us that she doesn’t want anybody around Poppy who has not had the T-dap vaccine as she has been seeing babies die from being exposed. Great. Add that to my list of things to worry about. Liam and Quinn had it with their regular immunizations so they are fine. I had to call your Nana to tell her she needed to get hers before she comes out here. Dr. Schwartz is just being extra careful which is good, but it still makes me nervous. Then there is the whole postpartum depression thing. We sat and had a conversation for a good 20 minutes about this. I told her I honestly wasn’t worried about it. I’ve never had it with my other kids and if I am depressed at all, it’s during this pregnancy -the here and now as being pregnant is keeping me from being able to do everything that helps me not to be depressed/consumed by my grief (which is not depression it’s just grief!) Mainly my exercising. Once your Poppy sister is here, I will be able to start to have my outlets again and they won’t consist of me resting in bed, which I fucking HATE, but instead will consist of going out and doing my hikes/runs/anything to get the adrenaline flowing. She talked about anti depressants. I told her how that’s not happening as I had taken them before and I swear they made me suicidal. How they just seemed to pile on more grief because I wasn’t dealing with anything and I was just numb. I agreed to let your daddy watch out for me though but still, I think I know myself pretty well. We’ll see if I’m eating my words in a few weeks and if so, I’ll deal with it my way. I sent Dr. Jo a text about this later today. We had a very long conversation which left me laughing at the way she got so riled up over the mention of medication/and postpartum depression vs just plain grief. I love her passion so much.We talked about our plan because we do have one. It’s the same one we’ve always followed. When things get more heavy for me, I see Dr. Jo on a more frequent basis and I’m always honest with her about everything I am feeling. We work through it the way it works for me. No fucking meds required. We talked about my sadness though all of this and how I will face it head on. She knows that Poppy is not just going to appear and BAM! all my sadness will be gone. She expects me to feel waves of happiness and waves of sadness with all of this. That’s just the way my life is always now. Poppy won’t fix it all. As Dr. Jo said, “You are not having Poppy to replace Ronan. You are having Poppy because you wanted another baby. But you need to be prepared for the people that are going to come out and act like this she is the answer to all of your sadness. People want her to fix everything and to take this all away from you but that’s not the reality of this. You need to let people know that the birth of this baby girl, does not diminish your pain or your grief. That she does not take Ronan’s place in your family. Ronan’s place is Ronan’s place and he will always be there.” That is our reality. That will always be our reality and nothing will change that. Not even your beautiful baby sister. I know she is going to help with our sadness, Ronan. But our sadness won’t disappear and I am o.k. with that. I am learning every day to just live with it.

Your daddy has been the one working in your room. I can’t bring myself to do a thing. Thank you for him. I honestly don’t know what I would do without that amazing daddy of yours. I always knew I was so lucky to have him, but going through something like this really makes me realize it that much more. He truly is unlike any other man on this planet. He has taken such good care of all of us in every way since losing you. I know it’s a big reason our family seems to be doing o.k. To have such a strong loving man to hold us all up, makes all the difference in the world. I can’t imagine where our family would be without your daddy. Every single night he talks to you out loud before he goes to bed. It mostly breaks my heart to listen to his words and I often times pretend like I am sleeping because what he says, usually makes me cry. Sometimes I don’t want to listen to what he is saying, because him telling you good night and how much he misses you, leaves me with a pit in my stomach that I will never get used to. I always appreciate this though even though it is so hard for me to hear. He went to a concert tonight. He’s been going to a lot of these things lately. I always encourage it. I will always be the wife that says, “Please, go. Have fun.” I will never be the wife that bitches or complains that he does these things. He deserves the break. He deserves to blow off some steam. He works so hard and takes such good care of us that I am always supportive of your daddy going out and having some fun. It makes me happy to see him doing these things. He is so ridiculously excited for your sister to be here. I cannot wait to see what it’s like for him to have a baby girl. I know it is just going to melt my heart. What a lucky little girl to have a daddy like him. It will be such a beautiful thing for our family.

I made your brothers dinner tonight. I cooked a really great brisket for Passover and talked to your brothers all about this holiday and what it means. It’s is important to me that they know about all religions, not just one or none. I want to teach them about EVERYTHING. I want them to have an open mind and be educated about it all. It was a fun little bonding time tonight where we talked about everything from sports to religion to marriage equality for all. Yes. I talk to my twins about this. I am proud to say that I do as I cannot believe this is even an issue in this day and age. Don’t we have bigger fish to fry? Why in the world do I care if my neighbor Bob marries Joe down the street? I don’t. People should be allowed to love who they love, end of story. My boys will grow up knowing this. It’s not our job to judge others or tell others what is right or wrong. It’s not hurting my family, affecting my marriage so GEEZ! Can we please just stop all this madness?! KIDS ARE DYING PEOPLE! Left and right kids are dying from a little thing called cancer yet nobody seems up in arms over this. That to me is pure insanity. People need to get a life and focus on what is really important in the world and it is not over who your neighbor, loves and wants to marry. The ignorance around this is shameful and embarrassing and enough is enough. I have 2 things I am really passionate about in life. 1) Childhood Cancer and 2) Equal rights for all. I won’t ever shut up or shy away from those two things. I was lucky enough in life to have parents who taught me to have an open mind at such an early age and who welcomed a very gay, black man into our world who we loved like our family and whom I was taught was no different from us. I will forever be grateful for my parents for this lesson in life. I will forever be grateful for my parents who let a little girl love a man for who he was, not who society defined him as being. I am a better person for this and my twins will be, too. I would have given ANYTHING for Ronan to grow up and be gay. Or straight. Who cares. At least he would have freaking had the chance to grow up and not die from cancer! Seriously. Where are our priorities?

Alright little man. I’m going to get off my soap box for tonight. I miss you. I love you. I hope you are safe. Please keep your Poppy sister safe. It won’t be much longer now. I love you.

xoxo

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That hair, that hair, that hair…

 

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Phoebe is on the left in this picture. Is her hair to die for or what? Big thank you to my little Rachel for making her day yesterday. Love you, Rach. You are the sweetest soul. Thank you all who have left such sweet comments on Phoebe’s page. Truly made my day.

Next up for Phoebe is a bone marrow transplant. Please keep her in your thoughts.

http://www.caringbridge.org/visit/phoebe26

 

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You know what is so totally awesome about cancer? Fucking nothing.

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Ronan. Today, I was sitting at my kitchen table pounding out emails, mailing bracelets to people, and missing you. A new email came in and it was an update from your old roommate at Sloan-Kettering, Phoebe. I still check in on her every once in a while. I still try to see her mom whenever I am in the city. We became pretty close after rooming together at Sloan and I know her mom and I both feel that the two of you had this unspeakable bond. I have been keeping up on how well she is doing and watching her get back to her life before she had to deal with that asshole named cancer. I have loved seeing her gorgeous hair come back in and felt really peaceful about the place she is in after she was declared NED from Osteosarcoma; which she developed at the age of 11. Phoebe endured so much, as do all kids who go through this, but her fighting spirit has never wavered. Her smile never seemed to dull. She is stronger than most adults but of course that came with a very heavy price. She shouldn’t have to be stronger than most adults. She should just be a normal girl, living a normal tween life. Unfortunately, that’s not how things have turned out for Phoebe, but you will never hear her complain of a thing. She has handled everything like a champ: much like the way you did.

I think we bonded with Phoebe and her mom for the first time over a bloody nose that wouldn’t stop. I knew that situation all too well. Being roommates in such close quarters, you hear everything. I think I tried to step in and help. Macy was with us. I think Tricia was, too. We will never forget it. Phoebe was scared. Her mom was scared. I did my best to help out because I had been in that situation 50 times before. I was an old fucking pro at the horrific bloody noses that you cannot control. After that bloody nose incident, we became friends forever. You died, Ronan. Phoebe lived. Her mom and I have remained close and her entire family has a special place in their hearts for you. Ellen, Phoebe’s mom, is always reminding me of how much they think of you. I so appreciate that.

I read the headline of Phoebe’s caring bridge journal today. It said, “Bad, Mad, and Sad News.” My stomach dropped. My eyes filled with tears. I knew what that meant, before I even started reading what was going on. Phoebe, after beating Osteosarcoma has developed a secondary cancer. This time, it’s AML- Acute Myeloid Leukemia. I immediately sent Ellen a text that said, “I just read your blog. You have got to be fucking kidding me.” She responded almost instantly and we went back and forth. I told her I would do whatever I could, which normally might mean hopping on a flight to go and help. I cannot do that now so I offered up the next best thing to Ellen and Phoebe which is my little Rachel who lives in NYC. I told them if they were o.k. with it, Rach would be happy to come by to keep Phoebe company, bring them treats, or whatever else they might need. They were very open to it so I called up Rachel who was more than happy to help out because she is not your normal 22-year-old. Rachel is an old soul who has such a passion for helping others that it makes me embarrassed at my 22-year-old self. She is the definition of selfless at such a young age which I admire so much. I asked Ellen if it would be alright if I posted Phoebe’s caringbride website because I know Phoebe tends to be a little more private. Ellen gave me the green light. I just wanted to offer them any and all the love and support that I have. They are a wonderful family and I am so devastated that Phoebe is going to have to go through more of this bullshit which was more than likely caused by the treatment she had when she was dealing with Osteosarcoma. I mean it’s bad enough that kids get cancer, but then to develop secondary cancers due to the treatment that supposedly saved them. That is just beyond acceptable.

I am asking you all to show Phoebe a little love. Stop by, leave her a comment, keep her in your thoughts, prayers or whatever works for you. She has a special place in our hearts here at the Thompson household and we will do whatever we can to help Phoebe through this time. Even if it means just making her mom laugh by my, “You have got to be fucking kidding me,” text. So glad to hear I was able to put a little smile on her face today. I am so glad I have my little Rachel in the city to help out, too. Thanks, Rach. I love you so.

Ronan. Ellen asked me to tell you to keep a special eye on Phoebe. I know you will. I love you my spicy little monkey. I promise to fix this. I promise this childhood cancer world will some day be better. It shouldn’t fucking be like this. This is my last little rant for the night but wouldn’t the world be a much better place if people like Honey Fucking Boo Boo were NOT on CNN? I about shot my TV the other day seeing this. Wouldn’t the world be a better place if people like Dr. Sholler or Dr. Jo were getting the kind of attention they deserve because they are actually doing really amazing work. I don’t understand how these doctors are ignored. How this HUGE problem is ignored. How these kids are just ignored. I guess because it’s easier to live a mediocre life where every day seems to be taken for granted and everybody seems to care about the wrong things. I can’t live in a world like that. I won’t live in a world like that. I’m going to create a new fucking world where shit like Honey Boo Boo or The Real Housewives of Asshole America, do not exist. Because people like Ronan and Phoebe deserve better.

Bye, Ronan. I miss you. I love you. I hope you are safe.

Here is Phoebe’s caring bridge below. Thanks all you lovely souls for stopping in to give her some RoLove. I love you.

xoxo

http://www.caringbridge.org/visit/phoebe26

A date where no pants are required

 

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Ronan. Another week done. Another week closer to your baby sisters arrival. A lot happened this week for nothing happening at all. I’ve spent most of the week doing I don’t even know what. Taking care of your brothers has kept me pretty busy. I feel like I’ve poured everything I have into them just so they know how very loved they are. There is a new baby coming. I am trying to be fully aware of everything they may be feeling with this. How does a 9-year-old process the death of their little brother and soon after that, the birth of their little sister? I have no freaking idea. So all I am doing is talking with them as openly as I can while pouring every single ounce of love and affection I have to give, into them. Liam finally got his new glasses and has been wearing them around the house and when he is out and about with us. He looks so handsome in them. He won’t wear them to school yet and I’m not pushing that on him. I’m just trying to let him get used to them first. I wish you were here to see him in them and how proud he looked when he put them on and looked in the mirror at himself. The first time he put them on in the car he goes, “Wow! I can see perfectly!” It made me laugh and broke my heart all at the same time. My sweet gentle giant. He slept with your daddy last night and I curled up in Quinn’s bed with him. Quinn must have told me 10 times how much he loves me. I snuggled up with him as we fell asleep. I always picture how it would be if you were here. I know you wouldn’t be sleeping in your bed but you would be snuggling up with your brothers instead. You loved being with them so much.

I saw Dr. Jo today for some therapy which included the chocolate cake she had waiting for me when I arrived. BEST.THERAPIST.EVER. We hashed out the weeks events. We talked about this Poppy girl and her birth. I told her I didn’t think I could make a specific birth plan for her because as with everything I do, winging it seems to be the best and works for me. I know she will be there and that is good enough for me. We have talked about having your Urn in the room with me. My only hesitation with that is that somebody might break your urn and ashes will go flying everywhere. But I think having your urn in the room with me as something to focus on might be good for me. We will see. I feel like I have been crying a lot. Crying when I’ve been hiking. Crying in bed. Crying when I’m driving. Crying over every song that comes on the freaking radio. My tears seem endless lately. It is just because I miss you so much. I just miss my best friend. I just miss my spicy monkey. I just want you back in the worst way possible. Dr. Jo asked me today when I thought I would be ready to forgive myself. I told her I didn’t know. That maybe Poppy would tell me when it is time in a secret way and only I will know what it means. Maybe you will let her know when it is o.k. for me to forgive myself for all the things I hate myself for that I know are truly not my fault. I think your sister is going to bring so much light into our world that I so very badly need. I think she will be able to hold my hand through this darkness in a way that nobody else can. I cannot believe she is almost here. I am so glad because I truly do not think I can wait much longer for her. I know I will be able to breathe much easier once she arrives. Both literally and figuratively.

It’s kind of been breakdown city over here this past week. It’s been one of those weeks where I feel like I have the weight of the world on my shoulders. I walk around every single second of every single day knowing that you, the love of my life, died. I never for a second forget that. I constantly feel like I am just here, doing my best, but blindly stumbling through this life without you. I never forget that I don’t have your hand to hold, your little lips to kiss, your messes to clean up, your hair to wash, you to dress or tuck in at night. Some days, I don’t know how I live without being able to do all of those things with you or for you. What I wouldn’t give to be cleaning up your messes or wiping up your puke from the flu. Even when you were here, doing those things, it was never an annoyance to me. I never got mad or upset or complained about the lack of sleep or things I was “missing out” on because I was just so thankful to have you. Even before you were sick, I knew what a gift you were. I don’t understand how you are now sitting on top of my dresser in a fucking urn. I still don’t understand how this all happened. I promise I am doing my best, Ronan but it feels so hard at times. I still know you miss me as much as I miss you. I still know we were never meant to be apart. I will forever think that this is so wrong and so beyond fucked up.

Today, Dr. Jo asked me if Inferno Fuckwad Bob was still around. Meaning my nickname for my grief. I told her yes, but I didn’t hate him as much as I used to. She told me she knew that would happen as it’s part of this shift. How her grief has become one of her best friends. I nodded my head and told her that made sense as our grief is never going anywhere. She goes “That’s right. So we may as well invite him in for a cup of tea.” I understand now. I can’t spend my whole life angry and fighting with my grief. I live with my grief 24 hours a day, so I’d better learn how to make the best of it. Your daddy went to the Suns game tonight. Your brothers are at a birthday party. If you were here, we’d be off doing something fun. Instead I sit in our house and cry for you, alone, the way I like it. Sometimes I have to take a break from the outside world. It’s still hard for me to be among the normal, happy people of the world. I’d rather sit here with my best friend, Inferno Fuckwad Bob instead. At least I don’t have to wear pants for our date.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

 

I have a chronic illness and it’s called sadness

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I had big plans today. HUGE plans. I had decided on them last night while I was in my bed, crying. I thought to myself, “Tomorrow I’m going to do nothing but stay in bed all day long.” I got up this morning, hopped in the shower and just as I was getting dressed for my “big day,” I got a text message from Stacy. It simply said, “Can you meet for breakfast?” I didn’t even hesitate as I texted her back, “Yes,” and plans were made. A year ago, I would have told Stacy in no way shape or form, could I possibly meet her for breakfast. That was the state of mind I was in last year. Things are different now.

I met up with Stacy and as soon as she sat down she said, “Fernanda is meeting us, too.” “Great!” I said. Even though she just had surgery, she still was popping in for our little breakfast which I was surprised by, but shouldn’t have been since her nickname should be freaking Superwoman. I sat and caught up with my friends and our breakfast ended up turning into a two-hour meal/discussion/sob fest. I listened as Stacy and Fernanda talked to me about some things they know I am struggling with. Mostly about the last week or so of your life. They told me they know how I am regretting not having you die in our home and I listened as they both explained to me why it was that we were encouraged to take you to the Ryan House. I hadn’t really ever heard this from them before. They talked about how scared they were that you were going to die this awful, painful death by basically drowning on your own blood. How for many kids that die of Neuroblastoma, this is what happens. It is usually a very painful and awful death. They talked about how they didn’t want your blood, all over our house. I listened to them, understood and now I feel like I can let this little piece of my guilt go. I do not blame anybody for pushing us to take you there. I know my friends only had our best intentions at heart as they always do. We all sat and cried talking about this. I said something about I only have the guilt because you begged me to go home and I feel like I didn’t answer your one little dying wish. Nobody knew you were going to die so peacefully the way you did. Nobody knew you were just going to fall asleep. I looked up at the girls and one of them, I can’t remember who goes, “But Maya, don’t you think Ronan’s home was wherever you were?” I nodded my head in response. We talked about some more things as we continued to sit and cry at the table.

I told them about the chapter for this book that I am supposed to be working on. I told them about what it is I was thinking about writing about. I watched as the color drained from Stacy’s face. “You can’t write about that right now. You are going to give birth soon. You cannot write about that.” Fernanda’s eyes welled up with tears. “You need to listen to your gut, Maya, but do you really want to write about that, now?” I told them I was having a hard time working up the courage writing about this part of my life, but it was the only thing my mind kept going back to. I listened to them both and their advice. I left our breakfast still unsure about taking on this chapter but I could not think of anything else that I could connect with to write about. I ran a couple of errands after breakfast and cried almost the entire time in the car. I came home and made a decision to head up our mountain to go hiking today. I can’t take another day of not doing a thing, exercise wise. I put on my clothes, threw on your little backpack and off I went.

I didn’t wear my headphones or blast my music while I hiked. I listened to my head instead. I listened to you. I took it slow up the mountain to keep your Poppy sister safe. I felt my head become less foggy. It was as I was coming down the mountain that I decided what I am writing my chapter about. It suddenly came to me so clearly just the way things always do when I am outside, exercising, and listening to myself and you. It felt so good to be free and clear with my thoughts flowing non-stop. I’ve said this from day one; nothing good will ever come from me hiding in my bed. I cannot change the world this way and for sad as I am and for as much as I want to hide, I can’t. Because if I hide then I die and I really don’t want to die anymore.

I said something to your Sparkly yesterday that has been bugging me to pieces. I told him I was working on being less sad. Saying that left a bad taste in my mouth and I have been mad at myself ever since. I texted him today as I was going up the mountain and told him that I had decided that me saying I was trying to be less sad, was bullshit. That my sadness is like a chronic illness. It’s something I’ll always have and it will always be a part of me. I have to accept it, stop trying to change it, and learn to live with it. I will never be able to get rid of my sadness but I can learn to manage it. Managing it for me will come in many different forms and I am slowly figuring out the “medication” I need to treat my sadness. No, not real medication. My medication. The things that work for me and help me through this life. Things like exercising, nature, writing, helping others, surrounding myself with the kind of people who build me up, not beat me down, and trying to live a life you would be proud of. That’s my prescription. It may not be prescribed by a real doctor, it may not work for everybody, but it works for me and that’s what I’m sticking to.

I’m tired from today and the hiking wore me out, but it made me feel good as well. I’ve missed our little mountain so much. I see Dr. Schwartz tomorrow so she can check up on this baby sister of yours. Please keep her safe and sound for me, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams my spicy little monkey.

xoxo

 

This explains why I will never support the American Cancer Society. They do nothing for our kids except use them. Making money off of our kids for your huge salaries!?!? NOT COOL!

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http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

There’s also this…

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Thank you to whomever nominated me for this. Best lovely little blog readers, ever. You can vote once a day. Are you all sick of voting for things for me yet?! I’m sorry! It makes me feel bad, but it’s amazing all the great things that have come from it! You all are powerhouses!

https://www.facebook.com/parentsmagazine/app_124605674371692?ref=ts