Taylor, you will forever have my heart. Thank you for continuing to be such a voice for these kids. I love you.

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http://www.huffingtonpost.com/2014/03/24/taylor-swift-visits-cancer-patients_n_5021039.html

Thank you, Phoenix Magazine. I am truly honored to be a part of this.

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http://www.phoenixmag.com/best-of-the-valley/201311/maya-thompson—activist-mom/

“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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2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.

Your Happy Birthday Sparkly smile. I love you.

A Phoebe Update

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

“Why? Because I’m scared.”

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Ronan. It’s official. For as much as I don’t want to slow down, I have to slow down. My body is screaming at me with everything it has to just stop. I have never been more bloody exhausted in my life. Your sister is so heavy that even just walking around trying to do normal things leaves me breathless and feeling like I want to fall over. Not cool. This is not how I roll. I am glad I crammed in every last thing I could before this hit me such as my little New York trip, foundation things, appointment things, etc… There is no way I could have gone to New York now. I can hardly get out of bed to tackle our laundry situation over here or keep up with the cooking/taking care of your brothers. All my body wants to do is rest/sleep. Otherwise known as my personal hell.

I spent the weekend taking it easy. I’ve had a bad cold to go along with this pregnancy that has wiped me out even more. I know this is just another way my body is telling me enough is enough. Your Papa Jim has been in town since Friday. He’s been sleeping in your room which you know always brings me comfort. Just the thought of knowing somebody is in your little room, brings me a sense of peace. I love it even more when I catch your brothers playing in there, with all of your Star Wars toys. They are still young enough to enjoy them every once in a while. I spent all day Saturday at my happy place, otherwise known as your brothers basketball games. They had games starting at 8 a.m. back to back to back. I felt like crap but there was no way I was going to miss their games. One of my favorite things in life now is watching those two play basketball. You would be so proud of them and how well they are doing, Ronan. Your two brothers constantly leave me amazed. They are such good sweet souls, even after all of this. I am so lucky to have them.

One of the things I did with Dr. Jo on Friday was go over our timeline that we sat together and wrote out about a year ago. It started from your diagnoses and ended the morning you died. You know I don’t have much of a memory of anything and one of the things I really struggle with is regret. She asked me to change anything I wanted to in regards to things I would have done differently with you and your treatment. Of course I changed things. A lot of things. I would actually like to change almost everything because what if by changing one little thing, your outcome would have been different? We will never know this. Your daddy still swears to me that your disease was so aggressive that it wouldn’t have mattered. It matters to me and I don’t know that I will ever be able to forgive myself, Ronan. I don’t care if at the end of the day, you would have died no matter what we did. I will forever hold on to you were my child and I should have been able to protect you and save you from anything and everything. Even stupid fucking cancer.

The first thing I told Dr. Jo I would change was I wouldn’t have had you die at all. Obviously. If only it were that easy, right? We then moved on and went over the doctors, hospitals, treatments and ended all things at the Ryan House. I sat there and sobbed while talking about this and told her I wish I would have never taken you there. Looking back now, I understand it was what we needed to do, to get your pain under control because feeding you morphine every hour on the hour was just not cutting it. But that little voice in my head will always go to the very painful place of at the end of the day, after everything you went through, you just wanted to be at home, in your house and I should have listened to you and not everyone else. It’s the least I could have done as your mama. I know a big part of not having you die at home was to protect Liam and Quinn, but I really don’t think having you here, would have hurt them as much as we thought it would have. They were with us when you died, it just happened to be at some strange place that it all happened. They will always have that memory of you there and I don’t think having you away, out of our house, will make that memory any better for them. How could anything possibly make the memory of their little brother, the most precious thing on earth to them dying, any better? I told Dr. Jo how I vaguely remember hospice meeting us at the airport after we had returned back from Philadelphia when we were told there was nothing else that could be done for you. How I had a stranger riding in our car with us and I remember being so angry because I felt like I had no control over anything and now there was a stranger riding in my car with us whom I had never even seen let alone talked to in my life. I remember hospice coming to our house and I told your daddy to get them out. End of story. I didn’t care who they were or why they were here, all I knew was that nobody really explained anything to me at all but I was just expected to understand everything that was happening. I told Dr. Jo I wish it had been her with me at this time. Because I know Dr. Jo. I know she knows better than anyone how to handle this very delicate situation. She would have done things in such a way that I would have been open to her. She would have had the decency to gently first of all, ASK me if it would be alright for her to be with us, to help us with anything that we might need or not understand. She would have ASKED to meet you and not just pretended like you were a baby who was already dead. She would have cried with me and understood my pain in only a way that a mother whom has also lost a child, can do so. Her expertise on all of this would not just come from a book or a class she took. It comes from so much more than that and I know I would have been able to feel all of that. I wished it would have been her, sitting with me, helping me, explaining to me everything that was happening/ going to happen. I wish it would have been her that would have told me I could have spent as much time with you as I wanted to after you died. That there was no rush to have your little body placed in a bag and wheeled away, never to be seen again. I wish it would have been her to have sat and wept with me, held me and helped me find my way back out into this bright, bright world in her oh so gentle way. It certainly would not have been her saying, “See you later, have a great summer,” never to really be checked on again. I wish I would have found Dr. Jo before you died. It did not happen this way, Ronan and because of this, I know one thing for sure. Dr. Jo could not be with me for your death but she will be with me for the birth of your baby sister. I’ve been thinking about this for a long time. I’ve talked to your daddy about it. Our conversation was brief and simple. I was laying in bed, crying I think.

Me: “Woody. I need to ask you something.”

Him: “What?”

Me: “I want Jo in the room with us when Poppy is born.”

Him: “Why? You are always so calm and you always do great.”

Me: (trying not to get frustrated because I don’t think your daddy understands the depth of this for me, having another child after having a dead child and how mentally hard this is) “I have always done great when I didn’t have a dead child. This is completely different now.”

And then I just said it, plain as can be.

“Because I’m scared.”

Him: “O.k. whatever you want.”

Me: “Thank you.”

I called Dr. Jo today. I asked her. She started crying on the phone. She said she would be honored. I told her thank you. That I don’t know if I can do this without her. She went on and on about how if I change my mind at any point, she will totally understand. I said I knew that. As of now, this is my plan. Did I also mention that Dr. Jo is a doula? Kick ass, Dr. Jo. I see this as a win/win. Not only is she here to help me with death, but also with life. She has been my lifeline through all of this, Ronan. I only wish there were 500 more of her to go around to help all the parents out there, dealing with the loss of a child. Nobody gets this the way she does. She has such a gift that is beyond this world.

It takes a lot for me to feel scared in this world anymore. I am scared for the birth of your sister. The range of emotions I am feeling come with such an overwhelming feeling of sadness and happiness and I know I need her to help me through this. I know when I need to ask for help and I need help with this from both you and her. I know with the two of you things will be a little less scary. In my heart of hearts, I know you are going to make sure Poppy gets here safe and sound. I will always trust in you and the way you are guiding me. I think you want Dr. Jo in the room with me just as much as I do. She should have known you, but since she didn’t she will know about you through the eyes of your brothers, the tears in my eyes, and the birth of your baby sister. Such a beautiful gift she is going to be, Ronan. Thank you for her.

I miss you. I love you. I hope you are safe. Sweet dreams, little man.

xoxo

 

Pediatric palliative care research study. Please read if you are interested/know anybody who is interested.

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My Dr. JoRo is conducting a study. Please see the information below. Thanks!

 

 

We are inviting those aged 18 or older to participate in a research study intended to explore the experiences of those who utilized pediatric palliative care for their child before and during his or her death. The purpose of this study is to determine the individual, familial, and societal effects of this experience and to improve standards of palliative care for families of dying children. Another purpose is to gather information about which attitudes and actions parents found helpful to them, and which ones they found unhelpful or harmful. Our goal is to improve a model of compassionate caregiving and intervention that fosters resiliency at every level. Our team consists of an experienced researcher (Joanne Cacciatore, PhD, FT), a doctoral student (Kara Thieleman, MSW), and a master’s level social work student (Angela Lieber) from Arizona State University. If you decide to participate, one of these three individuals will arrange an interview with you. Interviews will be recorded and transcribed. Interviews may last between an hour to two hours. Your participation in this study is voluntary and your identity will remain anonymous. If you choose not to participate or to withdraw from the study at any time, there will be no penalty or loss of benefit. Participants will be provided with a list of bereavement resources and we will gladly provide you a copy of the final paper upon completion.

Please contact Dr. Joanne Cacciatore-  jcaccia@me.com - if you are interested in being interviewed for this study.

20 months is not a kissing day

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Ronan. Today I woke up knowing it was the 9th. 20 months without you. I hate today so much. Your daddy woke up in the best mood ever. I know this is not true, but in my psychotic mind, it was. He was singing in the shower, Ronan. Singing?!?! Can you believe that one? I was beyond grumpy, hormonal and upset so of course I snapped at your daddy, “Can you please stop singing?! This is not a happy day!” He then made me feel like the biggest jackass ever by saying something really nice like he was just trying to wake himself up and he knows that today is an awful day. He tried to grab me for a kiss before work but I refused to give him one. I told him that today was not a kissing day. Remember the way you used to tell me that? In your grumpy little voice. “It’s not a kissing day, mama!” I always loved all my days with you, kissing or not, so very much.

I had a phone call this morning. I’ve had a lot of phone calls this week with different publishing houses. My agent, Nina, has done an amazing job of getting my proposal into the very best hands. Harper Collins! Random House! Simon & Shuster! St. Martin’s Press! Or as my Fairy Ro Mo said to me, “Nice little Indie Publishing Houses they are. Not! Wow!” I laughed out loud at her when I got that text message. I did not know if I was going to be able to pull it together for this phone call this morning as I was on the verge of tears. Luckily, it could not have went better. I think I cried at the beginning, listening to the woman on the other end of the phone tell me how sorry she was about you, but how moved she was with our story. I loved that she really seemed to get it and connect to you in a way that felt so right. She could not have been more complimentary which is always nice. I did what I always do in these phone calls which is let you guide me while I speak from the heart. I felt really good about it when it ended.

I didn’t have anything super crazy or dangerous to do today, on the 9th fuckwad of a fucking day so I did my best just to get through it. I miss my danger days where I used to take the 9th and do something totally dangerous and fun. Last year at this time, I was jumping out of an airplane. I mainly did it thinking I was going to die and I didn’t care. Once I hit the ground, I realized I didn’t really want to die, but instead I wanted to live my life to the fullest and forever do things that you will never get to do. Skydiving included. That was kind of my wake up call in life. I remember hitting the ground and thinking to myself, “If I can jump out of an airplane, I can do ANYTHING.” I still think this is true. I am so thankful for that experience at that time which totally woke my ass up. And I would do it again in a heartbeat, but something tells me that being almost 7 months pregnant, and skydiving do not go hand in hand.

So for today on my “danger day,” I totally did some rad mom danger things. I had to rent a Mini-Van due to being in a little fender bender a few weeks ago. Totally not my fault by the way. Shout out to the VP of your foundation, Ro, for running into me! I have to LOL at that one. It was a very minor accident and he felt so bad. But I have had the BEST time giving him shit about it. And now I get to rock a very dangerous mini van for the next couple of weeks which will be so very awesome! I also went to buy some new pants today because mine are no longer fitting me. I tried them on in the store and they were such a perfect fit that I of course had to wear them out. I spent all morning walking around with the tags on my butt and back thigh. Everyone in all of Scottsdale/Phoenix is now aware that I am a size 30 in jeans. Holla! If you ask me, that was a very dangerous day indeed.

I am wrapping up this post tonight with a raging headache and a wave of exhaustion hitting me that I have not felt in a while. I think the holidays, traveling, Teddy, you, grief, pregnancy, and going, going, going, non-stop is catching up with me. I might need an early bedtime tonight.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.

xoxo

A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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  • Instagram is my BFF

    Miss you already, lover. #poppy #ronan #fucancer #rideordie #mommynumbertwo @macymwood Dedicated to my @macymwood. Ride or die for life. #ronan #fucancer #iwillloveyoutilltheendoftime #lanadelrey #iwouldmakeoutwithlana Hipsters. #ronan #fucancer #middleagedhipsters #youngforever #forgotourflowerheadbands #lanadelrae Been trying hard not to get into trouble... #ronan #fucancer #lanadelrae #mymusicalsoulmate @macymwood This is my happy place. #poppy #ronan #fucancer #hidingfromtheworld #sundaysnuggles @macymwood @knjoy Sundays are for sleep. @macymwood @knjoy #poppy #ronan #fucancer #sleepingbeauty #wornoutfromsomuchdancing Just making out with my favorite homegirl. #poppy #ronan #youdownwithopp? #yeahyouknowme #homegirllove #fucancer Poppy's other mom is in da house! #poppy #ronan #fucancer #mytwomoms #thesebitchesarecrazy @macymwood A bunch of little ballers and a P-Ro, too. #poppy #ronan #fucancer #basketballislife #arcadiatitans This has secretly been being worked on for quite some time. As you can imagine, it was a very emotional thing. We as board members/friends at RTF decided it was time for the little seal logo to go. We needed something that really spoke to who Ronan was/is. This is what our amazing friends at Fervor Creative came up with after many meetings with us and many do overs. (pro bono might I add because they have such beautiful hearts) I think they nailed it this time as it shows the beauty, strength and bravery that Ronan had, in such a simple way. How no matter what, you always keep walking up that hill and fighting, and even in death, you wont stop fighting for a world that so badly needs to be fixed which is the world of childhood cancer. Looking at this makes me proud, it makes me cry, it makes me strong. After everything Ronan went through, he always held his little chin up with such dignity and pride. At 3 years old, he was such a little man who never felt sorry for himself or let what he was going through get him down. He was my greatest teacher in life and will continue to be as I carry him with me in everything I do. I love you, Ronan. I will never stop fighting for you and this fucked up world of childhood cancer that everybody just seems to ignore. We will change this, because of you. I hope you all like our new Ronan Thompson Foundation design. @ronanfoundation #ronan My favorite place to be on a Friday night. #poppy #ronan #fucancer #fridaynightsnuggles #mybabe It's a beautiful day in the neighborhood. #ronan #myneighboriscrazierthanyours #thisgoesoneveryday #neighborhoodproblems #movingtoiceland
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