What birthday?? Let’s run a marathon instead, fucker.

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Ronan.  Today didn’t start out extra hard, but that is how it has ended up.  So much has been going on.  Too much, I suppose.  I made it through my birthday as best I could.  It it any surprise that I didn’t feel like celebrating?  I just wanted the day and night to be over as quickly and painlessly as possible.  I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today.  He’s begged me over and over to please let him buy me some pretty earrings.  He knows if he goes out does it himself, I’ll just return them.  Pretty earrings won’t bring you back and that is still all I want.  NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY.  I still beg for him every single day.  So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear.  That because Poppy is here, she magically makes all my pain and sadness something of the past.  She doesn’t.  Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before.  I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making.  I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there.  I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.

After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running.  I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life.  I talked our Bri Bri into doing it with me as well.  She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2.  We got up that morning in preparation for the day.  I made us a little food, and we whispered in the dark about how excited we were to run this thing.  I took out a Sharpie and did my usual writing of your name everywhere I could.  I told Bri I was going to do her arms and she could do mine for a little extra running motivation.  I wrote, “Ronan” down one arm and of course “F U CANCER” down the other.  I handed her the Sharpie and told her to do my arms next.  I looked down at my arms after she was done.

RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.

“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.

“I know!” she said.  “I thought that’s what you wrote on my arm!”

“No! I wrote F U CANCER!”

We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves.  There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived.  I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day.  Besides, cancer is the biggest fucker anyway.

We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained.  I had a sweatshirt on but told her the fucker story anyway to stop her from crying.  It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over.  Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon.  So did the spectators on the street.  The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts.  I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you.  I was doing pretty well in the marathon until about mile 17 and that was pretty much it.  I hit that invisible wall that you hear people in the marathon world, talk about.  I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have.  I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line.  Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands.  I’ve never been more proud of my sissy in my life.  She is such a little badass in training and I am so honored to be showing her the ropes.

I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves.  It wasn’t just Ronan I thought about while doing this, but you all as well.  You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house.  I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die.  You remind me to get back up and fight harder than I ever have before.  So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.

Oh, back to today and how it was a really, really, really fucking hard day.  So hard, that I am too tired to write about it now, Ro baby.  It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much.  I have to get back to this book writing now.  I’ll try to check in with you in a few days.

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

xoxo

A mushy messy update because too much has been going on.

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Ronan. At the moment, I am feeling defeated. And really lost, lonely, used, and sad. I look around in the world and all I see are these fake plastic smiles. People who pretend they care, but they don’t. People who say they do, but they don’t. And just when I am coming up to get some air, I get the most devastating news delivered to me, since your death. I don’t think this is my news to share as it hit a little too close to home. I don’t think I need permission to share what it is that is going on, but I’m not feeling right about sharing it on here at the moment. I need to talk to the people in my life that I am closest to about how to handle all of this since this is my very open and honest blog, and when I talk on here it is about what is impacting my life at this very moment. I’m just not quite sure how to handle this. At this point, I am beyond heartbroken, scared, and sad. My family has been through so much. We don’t need anymore pain, but we cannot seem to escape it. I’m just so tired of it all. I’m just so tired of being sad, mostly. I’m learning to rely on my old friends more and seem to be wanting to keep them as close as I possibly can. The ones who I can trust and the ones who won’t let me down. The ones who are my family.

Just when I think my days cannot get any worse as I am trying to absorb the news that I have been hit with, your baby sister looks at me and rolls over for the first time. She feels me with hope, happiness, and a light that nobody can destroy because no matter what happens, she is mine and I am hers. I look at her, take a deep breath, and watch her little eyes fill up with a love that I have not seen in such a very long time. Eyes full of innocence, light and love that know no pain. Her eyes remind me so much of yours. I spent the weekend in a fog but a productive fog like always. Basketball games, time with your brothers, family things. I was out and about with Poppy, running errands in the retched heat. A lady came up to me in a parking lot, telling me her sad story and asking if I would buy her food. She was telling me how hungry she was, how she had lost her house, her life, her everything. I loaded Poppy in the car, grabbed some cash out of my wallet and handed it to her, but I couldn’t even speak. She then said to me, “Bless you child, bless you.” I looked up at her, my eyes filled with tears and I wanted to scream, “But NOBODY is blessing me! My son is dead, and now I am dealing with x,y, and z!” I screamed those words over and over in my head instead of out loud while I drove away into the hot bursting sun that looked like it was going to explode.

This is the part where I say, I know I am blessed to have the things that I have Ronan such as your brothers and sister, of course. I never forget that. But, I think I am entitled on some days to scream that I am in fact not blessed at all because I’m still just so mad, sad, angry and hurt over your cancer, all you went through and that you ended up dying anyway. Some days I am not blessed because I am still too blinded by the never-ending torture cancer killed my baby and I just want you back. And just when I am feeling like all hope is lost, something amazing appears out of the blue, only to be sent by you.

So, I started this post a little over a week ago. I have decided not to go into much detail as to what is going on, as I want to be respectful to my family. Nobody is hurt as of now. My brother is struggling with some issues, but thanks to my mom and her never-ending dying love for her children, he is safe for now. It’s no secret that my brother and I have not had the closest relationship, but at the end of the day, I love him and his sweet soul. I am begging you, Ronan, to help him get through this. I spoke to my brother on the phone a couple of days ago. I begged my mom to make him talk to me. He was resisting. She held the phone up to his ear and I just simply said, “Hey. I love you. I am here for you no matter what.” He told me through is his tears that he knew this and he loved me, too. I then said, “I am proud of you and I know you can do this.” I hope he carries those words with him and all that is he about to go through. I hope most of all, Ronan, he carries you with him and remembers your big blue eyes and how strong and brave you always were. I hope he can channel a little of your strength so he can come out of this healed and ready to start his new life that I know he is so capable of. I am so thankful for my mom for so many reasons, but today I am thankful for her because she single handily has saved my brother’s life. It’s up to him now to do the rest and I just hope and pray that he comes out the other side of this, Ronan. I know you will help him through this the best you can.

So, after my pity party week of feeling super sad, lost and alone, of course something magical appears as it always does when I need it the most. Remember how I told you that amazing company SpiritHoods jumped on board when I asked them to make a Spicy Monkey Hood in honor of you? WOW. I had no idea what this was going to turn into, but Ronan, I think we just did something big. Something so very big that is going to help change this world of childhood cancer that everybody seems to just ignore. I got a very last-minute email from the founder of the company, Alexander. It said something like, “Hey, I’m in Vegas next week, can I come from there to meet you?” You know my rule about never saying no to things, right? I try not to anymore. Ever. So of course I said yes even with everything that I have going on. Plans were made, and as always, I was not sure what to expect, so I just hoped for the best.

Do you know those moments in life when for a spit second, everything just feels right? That’s what if felt like for me the second I finally got to wrap my arms around Alexander and his stunningly gorgeous wife, Shay. Alexander is the founder of SpirtHoods and Shay is his wife, side kick and partner in everything. The two of them, combined, are beyond magic. We spent some time getting to know one another, but honestly I knew from the second I met them, that I have somehow, somewhere, known them before. Or maybe you knew them, Ronan which is why I felt so close and so at ease with them. I’ve been holding some things back in regards to your death and saving them for just the right people, the right moment, and the right time to do something really amazing and powerful with. I have no doubt in my mind, Alexander and Shay are just the right people to share our everything with.

The Spicy Monkey SpiritHood that was only just a dream of mine, is coming true. With 100% of the proceeds, going back to your Foundation. I am so thankful and humbled to be partnered up with this amazing organization. But the SpirtHood is only the beginning. After we got to talking, an idea came about because Alexander believed we could really take this story, to the next level. So, we made a short film. And a long documentary, as well. One full of days and nights of real footage, B-roll footage, interviews from our dearest souls, not a lot of sleep, lots of tears, sadness, laughter, honesty, love, and what day is it today?! Ronan, it is going to be so powerful. I held NOTHING back with all the sadness, truth and pain that the world of childhood cancer is really about, but nobody wants to show.

Little man. I will finish this post and this story, but not tonight. I started this over a week ago but between all that has been going on, I have not had the time to finish. Book writing is #1 priority right now, after your sister and brothers, of course.

Poppy and I took the red-eye out to NYC a couple of days ago. We needed a break before September, so to the Hamptons we went to see our Fairy RoMo. I so needed this break. I so needed to clear my head. I so needed to spend some time with one of our favorites and your Poppy sister’s Godmama. It’s lovely here. Beyond words.

I need to get some sleep. Everything is fuzzy and hurts. I’ll finish the rest of this, tomorrow I hope. Just wanted to give you some sort of an update.

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

xoxo

 

A Happy Birthday to your most amazing brothers.

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

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

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

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

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

Always, Ronan. We always wish you were here.

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

xoxo

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

 

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“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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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 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

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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.