“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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That beautiful day your sister was born

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Ronan. I know I’m supposed to sleep when your Poppy sister sleeps, but even early in these morning hours, I just can’t seem to do so. It doesn’t matter the lack of sleep I’m getting due to breast-feeding her, holding her, or obsessively watching her sleep because I’m scared she’s just going to up and stop breathing. I think at this point I’m just running off adrenalin and that’s o.k. Sleep stopped being my friend a long time ago.

So, do you want to hear the story about the day your sister was born? I know you already know it, but I’ll recap it for those who don’t. The last few weeks of my pregnancy I was miserable. Miserable in a way that I found myself begging day after day for your sister to finally get here. You know I’m not a good pregnant person at all and those last few weeks, I was beyond done both mentally and physically. Dr. Schwartz was well aware of this too which is why I got her to agree to strip my membranes to try to jump start my labor the same way she did with me for you. I went into her office on a Tuesday and she did this for me to try to get things rolling. It didn’t work. I went back to her on Thursday and once again she stripped away and I left her office hoping that your baby sister would make her entrance into the world soon; just like the way you did after I had this done. I ended up going to the hospital due to having some bleeding and pretty bad contractions had started up as well. I thought it was going to be go time, but as the night went on, the contractions stopped. I had to stay the night at the hospital so they could monitor me, but I was released the very next day. As you can imagine, I was out of my mind upset. I may be a patient person about most things in life, but the end of a pregnancy is not one of them. I also had myself convinced that Poppy was for sure going to be born dead or was never going to come out at all because clearly I had made her up in my deranged head. Once home I pretty much stayed in bed the entire weekend, not wanting to talk to or see anyone. If there was ever a time that I was “depressed,” in my life, you could say the last few week of pregnancy were it for me.

On Sunday night around 10 p.m. just as your daddy came to bed to go to sleep, I was huffing and puffing about how miserable I was and how I hated the world so I got up to do my late night laundry that I have become accustomed to. Just as I was cursing the pregnancy gods from above, I noticed a little drip, drip, drip running down my legs. I walked down the hallway and the puddle continued to slowly trickle out of me. I went in to our bedroom and said to your daddy, “I think my water just broke.” He jumped out of bed all panicked and told me to grab my stuff so we could rush to the hospital. I told him, “No way. I have to shower first. This could take forever and I’m not bringing Poppy into this world until I shower and shave my legs.” I calmly got showered, dressed, and off to the hospital we went. We were admitted right away and Dr. Schwartz was called. She ordered the hospital to start pitocin for me to get things to progress and little faster as I was still only about 4 cm dilated. By this time it was about midnight and I geared up for the night while your daddy quietly slept away on the couch. My contractions started to get pretty bad and the epidural could not have come soon enough. I could not get a hold of Dr. JoRo who was back up in Sedona as she had been with me in the hospital all of Thursday night but went home after I was released. My doula, your daddy, was just not cutting it as I screamed at him about the pain/having to feed myself ice chips because he was so tired that he could not stay up. Luckily, I had a really great nurse who helped me through everything while your daddy got his beauty sleep to prepare for the big day. Apparently labor is hard work when you are a dude ;) I was really proud of the self control I contained as it took everything I had not to throw ice chips at your Daddy’s head while he slept away and I sat there cursing away from the pain of the contractions that were getting stronger and closer together.

It was around 5:15 a.m. that I started to push your sister out. I had your blanket on my chest and did my best to remain calm as I said your name over and over in my head. 3 pushes was all it took and your baby sister was plopped in my arms immediately. I was overcome with so many emotions that is was almost as if I couldn’t feel a thing. I just remember staring at her and whispering, “Thank you, Ronan,” in her little ear. She looked up at me with her big wide eyes that I can tell are already full of so much wisdom. Your sister was born at 5:35 a.m., 6 lbs 11 oz, tons of dark hair and oh so perfect in every way. She had one little cry as she entered this world but that is pretty much the only peep she has made. I’ve never seen a more calm or peaceful baby in my life. I spent the next few hours staring at her and in disbelief of how much she looks like you. Your daddy and I cannot get over it. I think I went 48 hours without any sleep at all. My adrenaline was through the roof all I could seem to do was stare at your little sister as I slowly let myself fall in love with her. I needed some time to process everything and needed some time to bond with this new baby girl as you know how bittersweet this is for all of us.

Dr. JoRo arrived at the hospital around 10 a.m. and stayed for much of the day. She left once your brothers arrived to let us have some private time together as a family. It hurt to see your brothers walk through that door without you but it was also such a beautiful moment, too. They were so excited and proud to meet their new baby sister. I think they were also both relieved to see that she was finally here, safe and sound. We kept visitors to a minimum just the way I said we would. I needed everything to be calm and quiet not only for me, but for Poppy as well. As the day went on, I sat and watched out our window as an unexpected rain storm took over the entire valley. It was one that was not predicted but rather it came out of nowhere. I know you are always with me, Ro but this storm on the day your Poppy sister was born just proves it to me even more. It was such an amazing thing to witness like it was our own little secret. You are such a little spicy monkey boy and I spent much of the day smiling as I watched the rain pour down out of nowhere.

Our Mr. Sparkly Eyes came by both days that I was at the hospital. The first day he just popped in to take a peek at his new goddaughter and the second day he came for a little longer to sit with me and check in with me to see how I was doing/handling all of this. He told me how I was such a natural at being a mom. I smiled and told him I knew, that this was the easy part for me. I told him how proud you would be to have him as the godfather of your baby sister and how I knew that you would have picked him and only him for this as he is the only one special enough to do so. He will be the best at watching over your baby sister for me just like the way he helped to watch over you whenever he could do so. I know you would be so happy about this. I am so honored to have him play this role in your sister’s life. It makes all of this that much more special.

We were released from the hospital 24 hours later and it took us this long to decide on your sister’s name. We had originally planned on naming her Ireland Ronan, which I am still so in love with but for some reason, it just didn’t feel right anymore. Your daddy and I went back and fourth about her name, forever. I just could not part with Poppy. I didn’t want it to be a nickname or an afterthought. It had come to mean too much to me to just let it go. Your daddy threw in a few curveballs and suggested some names like Sophia and Alexandria, both of which I love, but this baby has been Poppy since she was 5 weeks in the womb. Nothing else felt right. Your daddy and I sealed the deal with Poppy Ronan with a kiss on the lips and a smile in our hearts. I know her name would be Ronan approved. I think you would have loved it so very much. It makes me smile and it makes me happy. Poppy Ronan Thompson sounds like the sweetest thing ever and it just seems to fit her little face.

We have been home now and are all doing just fine. I didn’t spiral into that postpartum depression like everybody was freaking out about and worrying that I would. I have been a little quiet and have not seen too many people but that is not due to depression. It’s just due to the four of us trying to enjoy our quiet time with your sister and soak this all in. I’ve been staying at home with her and just trying to let myself bond with her the way that I need to. I wondered how this was all going to feel… having a new little life around to take care of. I wondered if that hole in my heart would disappear due to your Poppy sister being born. I have come to find out this is not the case and will never be the case. I feel like my heart has grown and gotten bigger, but the hole there will always remain. Nobody can fill it as it’s not meant to be filled. It is there to remind me every single day of how much I love you, how much I will always love you, and how much this will forever hurt as your absence in this world is the most painful thing that I have ever felt. This hole in my heart will remain there for the rest of my life. The birth of your sister has proven this. If she can’t fix this, it was not meant to be fixed no matter how much love I feel in this life without you here. I will live with this hole in my heart for the rest of my life and I can be o.k. with this. I am learning to be o.k. living like this. It makes me stronger and makes me work harder at everything I do. I will let my pain do great things in this life to make you proud.

Alright my little man. I am going to go. Thank you from the bottom of my heart for your beautiful sister. Thank you for getting her here safe and sound. I promise to be the best mama in the world to her and teach her all about you. I can’t wait to learn from her the things I know you have already taught her. You are the best big brother in the world. We all love and miss you so much. I’m so sorry that you are not here with us. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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I thought I was ready, but I’m not ready.

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Ronan. It’s normal to sit partly naked on a table at your OBGYN’s office and cry, cry, cry while waiting for her to come in a check your cervix, right? I was really trying to avoid this today. I had my nose busily buried in a book that I was reading on my iPad, but somehow it was as if my hands were not my own anymore and the next thing I knew I was swiping my fingers across all of my pictures on my iPhoto only to be staring at you and your big blue eyes while I waited for Dr. Schwartz to see me. I can usually do this and be o.k. I mean, I look at your pictures all the time, but today looking at them left me with tears streaming down my face and wet spots all over my iPad. There you were in every picture, smiling your beautiful smile at me while I traced your mouth with my little pinky as if I were actually touching you. I listened to the voices screaming in my head that it couldn’t really be this way, that my darling, sweet boy, didn’t really die of cancer. The flashbacks began. The ones that forever haunt my mind. The way I watched cancer eat away at your little body, mind and soul. The pain that set in during your last week or so that I could not rub or kiss away no matter how hard I tried. Your sunken eyes, bloated belly, cold lips and stiff little legs. The pain that I now feel every single day and the sadness that never goes away. Now the harsh stares, un welcomed judgment about the grief that I carry around with me. The grief that nobody will ever truly understand but they sure can pretend as if they do while voicing their opinions about it while judging away. The baby sister that is now almost here that will supposedly heal my broken heart according to the world around me. It’s like the outside world thinks she is the magic pill that I’ve so been searching for but will never actually swallow no matter how hard they try to shove it down my throat. Those who know me well, understand my truth. Those who know me well, know that no amount of time, love or even a new human being will ever take away my pain of having to live my life without you and they don’t judge me because of that. It only seems to make them love me more. Those are the people I surround myself with. The handful of people that are not afraid to be a silent witness to this pain and only fill us with unconditional love. They lift us up not bring us down with their words of kind compassion, non-judgemental stares, and they are just so proud of us for still being here and being a loving family to one another. There are no expectations, no whispers of he’s in a better place, or she is doing everything wrong. I hear the whispers and I am very aware of who is doing the whispering. It’s like I have a sixth sense for those things and I have learned that the whispers will always be there, but I have a choice of whether or not I hear them. I mostly choose to tune them out because I know at the end of the day the proof is in the pudding and the pudding being your daddy, your brothers, and the amazing friends that have become family. Not to mention your Nana and Papa Jim. I always say I swear I could murder someone and your Nana would still say, “I am so proud of my daughter.” I know what it is like to be unconditionally loved, thanks to her. She has taught me a very valuable lesson through all of this. One that I could never repay her for or say thank you enough for. That’s the great thing about your Nana, too. After everything Ronan, after all of her love, support, strength, sadness, help… she would never look at me and say, “You owe me for this for all I have done for you. Or you hurt my feelings because you don’t pick up the phone. Or you are being selfish, rude and need to get over this.” She would never make this about her in any way shape or form. She is absolutely the most selfless person on the planet and I only hope that I too, am silently following in her humble footsteps. I know how much she misses you and misses me. I hope one day that I can start picking up the phone more like I used to when you were here. I am thankful that she does not take any of this personally because she knows that I am just doing the best that I can and to her, that is more than enough.

I cleaned myself up before Dr. Schwartz came into the room. I know I looked like a bloody mess as my entire face was blotchy and red. I was quiet when she came in to see me today and asked me her usual questions and went on with her exam. I told her how I have been getting sick again. Mostly during the middle of the night the throwing up starts. I won’t ever know if it’s your sister or my body’s way of reacting to my grief. I have a feeling it’s a little of both. She checked my cervix and measured my belly which is still measuring a week ahead of time. “O.k. it’s not going to be much longer now. You’ve dilated quite a bit. Let’s put you back in a room to see what’s she’s doing and watch your contractions.” I headed back out into the waiting room to wait for a room to open up. There was a girl out there, waiting with her little boy. I tried my best to avoid eye contact, but she smiled so I of course said hello. I was a wreck and listening to the little boy call out, “Mama!” was enough to make my eyes well up with tears as that is what you always called me. He was so cute but I refused to look his way as I knew what was going to happen if I did. I was doing a pretty good job of reading my book until his little car came flying at my feet because he had thrown it across the room at me. This made me laugh as I bent down to pick it up as it is so something you would have done. I returned the car to his mama and she shyly looked at me and said, “You’re Maya, right?” I smiled and said that I was. The girl told me how she has been reading my blog forever and how she actually saw me a couple of weeks ago out and about but didn’t want to come up and bother me. We sat and chatted for a bit while I tried not to get lost in the blue eyes of her little boy. She could not have been sweeter and told me how meeting me had made her day. I gave here a ziplock bag full of your bracelets that I just happened to put in my purse this morning. I knew there was a reason that I packed them. I don’t always leave the house with a bag full of your bracelets, but today I felt like I might need them. I’m so glad I was right:)

I finally got back to the room where my contractions were monitored and your Poppy sister was, too. Dr. Schwartz came in and read the results and told me due to my contractions, she wouldn’t be surprised if she saw me before Friday which means I could have your Poppy sister at any time. I thought I was ready for this but I think I’ve changed my mind. I’m not ready and I’m bloody scared as hell. The only part of me that is ready for this is my body. My tired body is more than ready to have this baby girl. My heart and my mind aren’t so sure. Can I do this doubts fill my head. Your Sparkly promised me that I indeed, can do this. I know he is right, but it doesn’t seem to be making things any less scary or sad. My excitement for your sister seems to have been put on hold due to the anticipation and emotional roller coaster of tears that will not seem to stop. I can’t seem to stop thinking about the fact that you won’t be here to hold her, love her, kiss on her the way I know you would be doing if you were here. I try to calm myself about this by letting my heart remind me that although you are not here, you will forever be watching over her, guiding her and protecting her in ways that only you can do. I would give anything for you to actually be here, teaching her all sorts of naughty things and causing all sorts of trouble but as I’ve learned the hard way, beggars can’t be choosers.

I’ve got to run, Ronan. Your Bri Bri aka, my little sissy is in town for orientation at ASU. Can you believe that? I don’t know where the time went as it seems like just yesterday I was bouncing her on my hip, watching her grow up and bounce Liam and Quinn around and then, you. Now she is all grown up and is finally going away to college to ASU. I’ve listened to her talk about ASU since she was 8 years old and how she would go to school there someday. That someday is almost here and I am so excited to have a little piece of our family in Arizona with us. Your brothers are thrilled. I know she is nervous but we are going to take such good care of her. I so wish you were here to be a part of this with all of us. You loved your Bri Bri so much. You two and your big blue eyes were quite the pair. I can’t wait for Bri to meet this Poppy girl. I know she is going to be so helpful with her the same way she is with your brothers. Best little sissy ever;)

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

xoxo

P.S. I just wanted to say a thank you to all of you lovely souls who have been sending the sweetest little gifts, cards, and even a few Poppy things. I even got a little Poppy headband and matching socks all the way from Ireland a couple of days ago. You all are the most thoughtful creatures on the planet. Thank you for loving my little boy and our family so much. Thank you for letting Ronan make you the most beautiful people. It makes my very broken heart, skip a beat. I love you.

A Phoebe Update

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

I miss you and normal still hurts.

tumblr_mgba04Ybll1qbqtjbo1_500Ronan. Things around here have been quiet. The quiet that is so hard for me. A normal quiet that still makes my skin crawl. You know the normal things that we used to do when you were here. Big breakfasts, family dinners, going to movies, playing sports, watching T.V. as a family. Things like that. I thought they would have gotten easier for me by now. I guess they have because I know I used to not be able to engage of in any of those things and now I find myself being able to do so. It still stings though. I still picture you missing in every single thing that we do. Your brothers had a play date this weekend. I happily sent them up to road to play at a friend’s house. I caught myself thinking, “I wonder if Ronan would be going with his brothers, walking up the road to play.” I pictured the image in my head and it broke my heart all over again that you are not here to do so. Some days I think my heart will heal, but it’s things like that where in an instant, my heart is shattered all over again.

Your brothers seem so happy. This will always be the way I can tell that I am an alright job in life. It will always be reflected in the ways that they are. They are happy, well-behaved, and so connected with us. I am amazed at the way our family has been able to stay so intact and connected. I sometimes wonder if it’s weird that your brothers, for the most part, are always with us. They go to play dates here and there, but for the most part they are with me and your daddy pretty much all the time. We spend a lot of time together, doing things as a family. We both have worked so hard to make sure your brothers know they are safe and loved. I think for a long time they both worried about if they were safe or not. I watched as their innocence was shattered and taken away. I feel like we have slowly put it back together for them. Last night Quinn fell asleep in bed with me. We were watching the Oscars and I was rubbing his back. He fell asleep soon after that and I kept him in my bed with me and held his hand as I fell asleep. Just like I used to do with you. I found your daddy in Liam’s room all snuggled up in bed with him. They were both asleep on their backs and Liam was sleeping on your daddy’s arm, just they way you used to always do with your daddy. The sight of this was so bittersweet. It was so beautiful but so sad as well. I then went back to my bed while passing by your little cold, empty room. A year ago I would have taken 5 Ambien after seeing this sight. That thought didn’t even cross my mind last night so is that a clue that I am doing better? I guess so.

I went to see your Sparkly today. The first thing he said to me was, “What’s going on with Dr. Jo?” I gave him a funny look and asked him why he asked me that. He said, “Because I’m worried. I haven’t heard you talk about her in a long time and you normally won’t shut up about her.”

He knows I have been slacking on my therapy. I gave him a little smile and told him he would be happy to know that I have been seeing more of her and I started telling him about some of the things we have been working on and doing. I told him about the little project Dr. Jo is having some of my close girlfriends work on for me. I was in her office a couple of weeks ago and I was telling her how I am so traumatized by everything that I am having a hard time remembering any of the good things about your life here, Ronan. All I can think about is your diagnoses, how awful everything was, and your death. She asked me if it would be alright to reach out to a couple of my friends and ask them to do a little project that she thinks might help me. I told her she could get in touch with Fernanda and Stacy as they knew you and know everyone around us who knew and loved you. Dr. Jo said she was going to have them ask our family and friends to write down little memories of you to keep in a box at our house that way we can go through them and read them whenever we want. It’s such a simple and sweet idea. I don’t know if it will help or hurt but I’m willing to give it a try. Dr. Jo is also trying to get me to write you a letter. I know I write to you all the time, but she wants a real letter written to you. A deep letter, a heartfelt letter, baring my soul. She’s been asking me to do this for I swear a year now. I tell her I think about it a lot, but I’m not ready to do it. She knows why. She thinks in this letter I will find that you have forgiven me for everything. Even though nobody thinks I did anything wrong, not even you. I still feel like I did something wrong because you died and I am not ready to forgive myself. I still like living in that place of deep torture and pain because I feel as if I deserve to feel this way. Someday I might be able to let this go, but I’m not ready yet. It’s like if I let that go, I’m letting a little piece of you go and I don’t want to let any of you go. Ever. Including my self torturous pain that I like to feel because at least it means I am feeling something. I’ll take feeling something any day over being numb or even worse, happy. How do I ever have the right to be happy again when you are dead? I’ll take my moments of happiness in life but I don’t imagine ever being able to go back to a life where happiness filled me 24 hours a day like it did when you were still here and our family was still all together. I can be happy with my moments of happiness because when I feel them, I am fully aware of them and I appreciate them so much more than I used to.

Your Sparkly asked if your Poppy sister is ever going to get here. I pulled out her latest ultrasound pictures to show him and I watched him as his eyes lit up and he let out that great chuckle of his. In one picture, Poppy has her leg pulled up all the way to the top of her forehead. Limber little thing. He said he knows she is going to be the most beautiful little girl. I just want her healthy. Forever Ronan. Nothing else matters. I told him all about her hiccups and how it was the sweetest thing to feel. Not much longer now. I think I start seeing Dr. Schwartz every week starting Wednesday. I cannot wait to have this little one here. We all need this little piece of life to place in our family again. We all need this little gift from you. I know you know how much. I promise she will grow up knowing all about you. How you are her big brother. Nothing will change that.

This is all for today little man. Time to get dinner ready for your brothers as they will be home soon. I miss you. I love you. I hope you are safe.

xoxo

 

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

 

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.

I’m sad, I’m sad, I’m sad.

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Ronan. I’m in route back to Phoenix on your 21 months since you left this earth. I’ve been having flashbacks of the end of your days, off and on today. Mostly it is still so painful that I find myself trying to block out the memories of that horrific time from flooding my mind. I’ve been telling myself all day things like your death, isn’t really real. I’ve been telling myself all day this is somebody’s else’s life and not my own. Sometimes I pretend like I am watching a movie or reading a book of a stranger who is living the life that I am living. Avoiding my reality once in a while helps me get through the days that I just can’t take living this life without you anymore. Eventually, reality always comes back and smacks me in the face though. Tonight a big dose of reality is waiting for me as I step off this plane. I know what I am coming home to. Your daddy and brothers will be waiting for me so excited at the airport. I know the tears that will fill my eyes that I will have to fight back. Of course I am happy to see them but it’s you I want to see the most and you are never there, waiting for me with the 3 of them like you should be. I will always look for you though.

New York was a good trip. A productive trip. I met with quite a few people and will have some decisions to make. I met with one editor from a certain publishing house, more than once. Once in a formal setting and once again, outside of her office. I felt a connection with her that I often don’t feel after just meeting someone for the first time. I know what part of our connection is. She has a Ronan. Plain and simple. She has a son that she is absolutely insanely in love with and she completely gets the bond that I have with you. We sat outside of her office and I told her some things that I don’t share with just anyone. We talked a lot about you, about her son and all the things you are making happen in this world. She knows that you are the force behind everything that comes my way. She talked about my natural talent as I writer. How some people try so hard to become a writer and they just don’t have the natural ability that I have. She told me that she knows that this is a gift from you. It’s one of the things are you driving me to do in this life. She told me I could have chosen to do anything after losing you, but this chose me and it’s what I will do for the rest of my life. “You are a writer, plain and simple. This is what you were meant to do and will do for the rest of your life.” Coming from her, I was beyond flattered. She’s a pretty big deal in the literary world and is a writer herself. Hearing those words from her meant a lot to me. I took everything she said to heart and appreciated her willingness to be so open and honest with me. She has given me a lot to think about. I love people like that. The one’s in life that make you think about things from every different angle and don’t want you just to take the easy way out.
With the little free time that I had in New York, I spent it with Rachel. Our Rachel that feels like a younger sister to me. We walked all over the city. So much so that at one point I told her I felt like my vagina was going to fall out due to the heaviness of carrying Poppy. Sorry if that was TMI, but if you’ve ever carried a baby, you know what I am talking about. I took her to your favorite pizza spot, Deliza’s, which is right by the Ronald McDonald House. I knew I wanted to go there during this trip but I imagined going all alone and crying into my favorite soup. Instead, I grabbed Rachel and took her with me. I was so glad I didn’t have to sit there alone. I ate your favorite pizza and soup. I wish I could tell you it tasted as amazing as I remembered it with you, but of course it didn’t. Nothing in the world will ever taste as good, smell as good, or feel as good as it did when you were here with me.
I’m not going to lie. I’ve noticed myself starting to have a really hard lately. As in really hard. Really hard in the way that I felt not long after losing you. I remember the 6 month mark being a really hard time for me. I feel like I am back there again. I feel disconnected from everything and everyone. I feel myself slipping into my alone place, not wanting to connect with anyone. I’ve noticed my heart racing a lot like I am having panic attacks again. I cannot wrap my head around the fact that you are dead and the world is just going on when mine seems to be standing still. The world seems so noisy and not in a good way. It seems to be filled with all the wrong things, the wrong people hurting others, the wrong everything. Everything seems to be suffocating me. I’m sure my feeling this way is due to a combination of things. I am about to have this baby girl and also your 2 years since you died is right around the corner. I find myself obsessing about you and why you are not here. I find myself obsessing about your safety, your happiness, your sadness and who is taking care of you when it should be clearly be me. I am angry and sad in a way that I haven’t been in a while and there is nothing that can make this pain go away or better. I day dream of leaving this fucking life behind because sometimes my sadness is just too heavy and too much. I am trying to get excited about Poppy, but all I can focus on is not having you physically here to be a part of her life. I know you will be a part of her, Ronan, but not in the way I want or you want. It’s not the same as having you here.
I sat today and tried to be productive. Mostly my day was filled with my tears that seemed never-ending. I went to see your Sparkly for a bit. I hate seeing him on days like today where I am so sad that I can tell it hurts him.
“I don’t know what’s going on. I’m so sad and I can’t stop crying. I just miss him so much.”
  I could see the way his eyes were starting to form tears as he said to me, “You just spent the past week talking all about Ronan in New York. Thinking all about Ronan in New York, not that you’re not always thinking about him but I know everything in New York was very intense for you. You aren’t sleeping at all. You have a baby on the way. You have to be mentally and physically exhausted, sweetheart. I don’t know why you continue to do things like this. The going to New York thing all alone. It’s too much, especially at this point in your life.”
Me: “But I always do these things alone. That’s how I like it.”
Him: “I know you insist on doing all these things alone, but it’s not the way it should be. You are back now so please just take these next few days to just stop. Slow down. You’re doing too much.”
I just let my eyes fall to the floor. I wanted to say I don’t know how to stop. How stopping will make me want to run up my mountain 8 months pregnant and not come back down. But I just promised him I would try instead.
We sat for a while longer and caught up. As I was walking off your Mr. Sparkly Eyes said, “Hey, please just give me a smile. Even if you don’t mean it or don’t feel like it. Come on, just try for me.”
Not even him begging for a smile could make one appear today. I was not about to put on a pretend one for him either. So I just turned around, walked back and wrapped my arms around him instead. I stood that way for a minute, while the tears fell down my face. I wiped my tears away and let him tell me it was going to be alright. I nodded my head and walked off repeating the words over and over again, “It’s going to be alright, it’s going to be alright.”
I don’t know if things will ever be alright, Ronan. All I know is this is the way it is.
I miss you so much. I love you so much. I will forever be sorry, sad, and brokenhearted. I hope you are safe. G’nite baby doll.
xoxo

I’m not dead, I’m just in New York.

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Turmoil. A state of great disturbance, confusion, or uncertainty.

Ronan. I’ve decided that I live in a constant stream of turmoil. I have known this for a while. I am trying my best to learn to live with this as there is no outrunning it or getting rid of it. It’s not going away anytime soon. It will always be a part of my life, so I’d better learn to just accept it.

I’m in New York. I’ve been here for a few days. I took the Red-Eye out late Monday night. I can tell you I was honestly sad to leave your daddy and brothers. I hate that because of this new life, our family often has to be apart. It wouldn’t be this way, if you were still here. All I ever wanted in this life was our family, healthy, and together. I’m still pissed off that some fuckwad decided that was not o.k. The Red-Eye was a little miserable. I normally love it, but try being almost 8 months pregnant and getting comfortable on a flight while trying to get some shut-eye. Poppy was not happy. I kept thinking I was going to squish her, sitting down for that many hours and not really being able to stretch out. Of course I kept picturing the umbilical cord wrapped around her neck and the cause of her death being the Red-Eye to New York. Insanity often fills my mind and as always, I don’t fight it, I just talk my way through it. I arrived to New York with Poppy still alive and going crazy in my stomach. She seems to always be moving about. I was beyond exhausted and fell asleep as soon as I arrived in the city and my head hit the pillow. Thankfully, I didn’t have any meetings scheduled for Tuesday so I just rested the entire day. I met up with our little, Rachel for a quick dinner and we went to Bloomingdale’s to eat your favorite Fr-Yo, but that was my extent of going out.

The rest of my time here has been full of meetings. Lots of good meetings, interesting meetings, emotional meetings. For the most part, I’ve held it together quite well. I was a little emotional today during a meeting I had at one of the publishing houses. Somedays I can talk about you until I am blue in the face without breaking down. Today was not one of those days. It wasn’t too bad. It’s not like I threw my head down on the table and sobbed into my arms like I often do. Today just proved to me that I felt comfortable enough with the people in the room to let my guard down a little bit. I think it was actually a very beautiful thing. I love when I see in other people’s eyes the way they believe in you, in us, in our never-ending, crazy, intense love story. I saw that today and it is always such a powerful force to be reckoned with. I am always thankful for it.

After my last meeting, I popped over to Solving Kids’ Cancer to see my two favorites, Scott Kennedy and Catherine London. My two sidekicks in all of this because they get this in a way that most people do not. In a way that I wish they did not, but they do and now they will forever be a part of my soul and my life in this fucked up journey. I see myself when I look at them and it is always heartbreaking, but they are also two of the most beautiful people I’ve ever come across in my life. Our visit was short, but I was just glad I was able to see them at all. Even though my time here has been packed, seeing them is always a must.

This is all for my little update. I know it’s short, but I just mostly wanted to check in with you all to tell you I’m alright. I’ve been getting quite a few emails with people worrying about me because I haven’t posted in a while. You all are the sweetest. I am o.k. Just busy and I always try my hardest to unplug a little while in New York. It’s my own little time out to breathe for a bit. Thanks for checking on me, worrying about me, and loving me. You crazy peeps, you;) You all make me smile.

I love you, Ronan. I have a lot to think about. I am trying my best to really take my time with any decisions that will be made in regards to this book. I just want to make you proud. Sweet dreams, little man. I miss you. I love you. I hope you are safe.

xoxo

A Gold White House. I Will Not Stop Begging. Or Crying.

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Ronan. I had no idea getting 25k signatures on our petition was going to be so hard. I mean, it shouldn’t be, right? It seriously is something that takes 60 seconds. I have been working non-stop on this and I know a ton of other people have as well. Again, thank you to all who have signed and who are harassing everyone they know about it. This has to work. It is time The White House steps up and starts to recognize Childhood Cancer. It should have happened a long time ago. I’m still blown away that the awareness has slipped through the cracks. Did you know that George Bush Senior, had a daughter that died from leukemia? I believe she was almost 4, just like you Ronan, when she died. Heartbreaking, right? Heartbreaking, but you would think from that, something fucking amazing would have been done, that would have put childhood cancer on the map where it does not get ignored. We had not one, but two President Bushes that could have done something huge, but as far as I can tell, not much was done. So here we sit now, begging for a petition to get the signatures it needs in hopes that The White House will say a BIG, FAT, YES to lighting that White House up GOLD for the month of September. This is not something we should have to beg for. I begged for the life of you, Ronan. Begging for signatures just seems silly, but as I said before, I will do whatever it takes.

I really hope President Obama, takes a stand on this. I really hope the First Lady decides to get involved because trust me, kids are not dying left and right due to childhood obesity. Do kids with childhood obesity have to go through harsh chemo treatments meant for adults? No, they do not. Kids that are diagnosed with cancer get to not only go through awful chemo, but these lovely things as well… Let’s add scary radiation to the list where they are left in a tube, all alone, not understanding a thing. Also, extreme fatigue where they no longer get to be a child. Constant flu-like symptoms such as runny noses, chills, and coughs. Pain that they cannot fix such as headaches, muscle pain, stomach pains, or even temporary nerve damage. Pokes, prods, riding an IV pole around a hospital instead of a bicycle. Mouth, gum and throat sores. Nausea, vomiting, loss of appetite, constipation, diarrhea, bloody noses that cannot be controlled due their platelets being wiped out. Skin changes such as blisters, peeling, and swelling. Feeding tubes.  Weight loss or gain. Lovely hair loss which leaves them to feel weird and different from everyone else around them. Kidney and bladder problems. Anemia, which destroys all types of healthy blood cells and leaves the child often pale, speeds up their heartbeat, and shortness of breath. Blood Clotting problems where everything bleeds non-stop including a small scratch or bloody gums when they brush their teeth. Neutropenia, which leaves the child with an immune system so shot, that they often cannot fight off infections. Let’s not forget all the surgeries that come into play. Stem cell transplants, bone marrow transplants, bone marrow aspirations, the awful port changes, nightly shots to boost their immune system. The endless amount tears, worries, and pain. And those are just the physical symptoms. Don’t forget all the psychological damage that is done as well. Not to mention being torn away from their siblings, parents, friends, and the extreme stress it adds to the family who have no choice but to put on a strong face when all they really want to do is crumble up and die.

Sometimes, cancer treatments can cause permanent changes to a child’s growing body. These long-term side effects can include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs. Kids may experience issues such as delayed cognitive development, growth problems, and infertility. In some cases, those who’ve received certain types of chemotherapy are at higher risk of developing a second type of cancer later in life. Let’s not forget that every single day, 7 kids just up and die from childhood cancer and every single day 46 kids will be diagnosed. Let’s not forget, that this could happen to anyone and childhood cancer is the NUMBER ONE DISEASE KILLER IN KIDS. But I totally understand why we have taken such a stance on childhood obesity.

So, here I am, begging for signatures for a petition that I don’t even know The White House will say yes to. Here I sit, with tears streaming down my face not ONLY for the loss of you, but of so many others as well. All I am asking for is for childhood cancer to be as recognized as all the other cancers out there. All I am asking for is for the color GOLD to be as recognized as the color PINK. Just make it equal. Why isn’t it already? These are kids for crying out loud! They should not be thrown into a life of being “fighters,” because nobody is fighting for them.

 NATIONAL CHILDHOOD CANCER AWARENESS MONTH, 2012

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION
Every year, thousands of children across America are diagnosed with cancer    an often life threatening illness that remains the leading cause of death by disease for children under the age of 15.  The causes of pediatric cancer are still largely unknown, and though new discoveries are resulting in new treatments, this heartbreaking disease continues to scar families and communities in ways that may never fully heal.  This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness.
While much remains to be done, our Nation has come far in the fight to understand, treat, and control childhood cancer.  Thanks to ongoing advances in research and treatment, the 5 year survival rate for all childhood cancers has climbed from less than 50 percent to 80 percent over the past several decades.  Researchers around the world continue to pioneer new therapies and explore the root causes of the disease, driving progress that could reveal cures or improved outcomes for patients.  But despite the gains we have made, help still does not come soon enough for many of our sons and daughters, and too many families suffer pain and devastating loss.
My Administration will continue to support families battling pediatric cancer and work to ease the burdens they face.  Under the Affordable Care Act, insurance companies can no longer deny health coverage to children because of pre existing conditions, including cancer, nor can they drop coverage because a child is diagnosed with cancer.  The law also bans insurers from placing a lifetime dollar limit on the amount of coverage they provide, giving families peace of mind that their coverage will be there when they need it most.  And as we work to ensure all Americans have access to affordable health care, my Administration will continue to invest in the cutting edge cancer research that paves the way for tomorrow’s breakthroughs.
This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer.  May their courage and commitment continue to move us toward new cures, healthier outcomes, and a brighter future for America’s youth.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2012 as National Childhood Cancer Awareness Month.  I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty first day of August, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh.
BARACK OBAMA

Please, President Barack Obama, stay true to your words. Please fight this fight with us. A change cannot happen without you. Please do so much more than just some words on a piece of paper.

Ronan. I love you. I miss you with every aching bone in my body. I am so sorry this is not fixed already. I am so sorry you had to die from something that is so awful and continues to be ignored. I promise to fix this for you. I promise to never stop fighting for you. I love you with everything that I am. Forever.

xoxo

I won’t stop posting this petition until it gets the 25k signatures that it needs. This is our only chance. If we don’t get this passed this time, the required signatures goes up to 100k. This is not just another thing of spam that comes your way. Signing this can help this cause. Please. I will do anything. I will shave my fucking head. I will eat worms. I will stand on a street corner and whore myself out, but I don’t think my husband would like that very much. I will jump out of a plane but for those of you that know me, you know I would do that for fun, anyway. Oh, and plane jumping might be off-limits for now due to the safety of Poppy a.k.a. Little PopStar.

Please, just sign and share. Go to your local news stations. Beg with no shame, just like the way I am. Or do the complete opposite. Read this, do nothing, and go about your self-absorbed ways. I have enough tears, that I can spare them to cry for you as well.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

IMG_0347

I know this picture is hard to look at. But imagine how it felt for him and for us, as his parents. He was 3 years old. The fact that nothing has changed for childhood cancer is unacceptable. The fact that he had to go through all of this as so many others are and will, is something I will not stand for. Please do not just go about your day. Please help us do something. I am not going to stop fighting for my child, ever. He is worth every painful thing I feel, think or see. He is worth all of this pain and suffering. It reminds me of why I cannot give up. I will not curl up and die or go on with my life ever. He is my life.

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