Ro baby. Your song for the night. And an epic picture!

 

 

 

http://www.youtube.com/watch?v=_GMQLjzVGfw

 

This picture made my freaking week!!!!! Mark Foster from Foster the People and Kimbra wearing a Rockstar Ronan bracelet.  And notice his star tattoos! We think this is a sign. Thank you, Teddy. Take good care of that mama of yours for me. I’m working on some big things for the both of you. I love you.

xoxo

May the odds be ever in your favor

Ronan. I’m in route back to Phoenix. I spent the afternoon with Dr. Sholler. I came here for a very specific reason. I am leaving here with the answers I wanted. I am leaving here with clearer vision of my plan. I am leaving here feeling strong, motivated, and ready to kick some ass. I have no doubt everything that I am going to do, is going to get done. I know what I am doing is a very big job. But there is no job too big when it comes to saving the lives of these kids who are fighting this awful disease. It’s the freaking least I can do. They are the one’s doing the really, really hard work. The least I can do is make it easier for them and a little less scary. The least I can do is give back to this world that I love so much now. The only world that I seem to flourish in and love. I don’t belong in any other world anymore. This is my world. I’m not running away and going back to the pretend world that I know I could have if I wanted it. The one full of pretend dinners, pretend problems, pretend complaints. Everything in life is fixable when you have your health and everyone in your family is alive and well. I don’t live in that kind of world anymore. I cannot go back to it and abandon all of this. That would kill me. This I know. This life without you is hard, Ronan. But I can live in it by trying to fix all I the problems that I see. I can live in by trying to help others going through this. I can live in it by pouring everything I have left of myself into it so I can live a new life now. This is the life I want. This is the life that I will fight for. I will make this world better for others going through it. I have people say to me all the time, “Isn’t it hard for you to be around this?” “Isn’t it hard for you to be at the hospital?” “It must be hard for you to still be a part of this world.” I usually just reply that it is not hard. That is the only world I feel like I belong in. I don’t know how to explain it. I must be crazy, right?? Maybe. But crazy feels good to me.

I know I have met my match with Dr. Sholler. I seem a lot of similarities between us. She cares about her families so much. She thinks outside the box. She’s a rule breaker. She doesn’t like the word, “No.” She refuses to accept it. She is looking at this disease in a way that most people have been too scared to do so. She knows things have to change and is here, to change them. I am here to help her in any way that I can. She is a dream for these kids fighting this disease. I am beyond sad that we did not find out about her sooner. Of course, I think she would have saved you because that is the mama in me talking. The mama in me that will forever constantly beat myself up for not saving you. I know how hard your daddy and I fought for you. I know how much we educated ourselves. But at the end of the day, it was not enough. At the end of the day, this is my fault. Will I cry the rest of my life because I believe this? Yes. But it will also be the reason that I fight for the rest of my life, too. Because I know I will make this better for the others out there who will walk this path next. Unfortunately, there is not a shortage of kids’ getting this disease. I swear I am hearing about more and more of them, everyday. I know I cannot stop the diagnoses of the kids that get this disease. But the odds of survival, need to be in their favor. Not against them. Why is this acceptable in this day and age? Who would ever stack the odds against a helpless group of kids? Greedy people, that’s who. Hello big pharma. Thank you for killing my child. I’m not going to go there tonight. I’m too tired and I have too many other things to fight for, right now. Someday, I will take them on. But not now. That is way too big of a fight for me to take on at the moment. That problem is too out of my hands. I’ve got to handle the things that I feel I can help change, now. Not 20 years from now.
This is hard for me. I don’t like not talking about all of my 50 million ideas. I don’t like not being able to write about what it is, I am working on when all I want to do is scream it from the rooftops. I promise, very soon I will do this, but not now. Right now, I have to sit in a time out, in a corner, and just be with all of this. I will know when the time is right. I don’t feel like I am there yet. Thank you all for being patient with me. Thank you all for believing in me and waiting this out with me. I promise you, it will be worth the wait.
Be thankful for the life you have. Please. Do you all know how lucky you are, that you are just readers? I would give anything to be just a reader and not the one living this freaking never-ending nightmare. I miss my Ronan so very much. The missing him does not become less as time goes on. The pain from not having him does not lessen as time goes on. It only becomes deeper and harder. I wish people would stop acting like I am doing better. Like I have just recovered from the death of my imaginary dog or something. I will NEVER recover from this. I will NEVER get better. I will change. I will grow. I will learn how to survive in HELL. I will learn how to fight harder just to breathe, eat, sleep, laugh, love, and go on. I make a choice everyday to walk on this earth. It is not a given right to me anymore. It is a choice that I decide every single day to do. It is painful, scary, sad, and lonely. But what kind of mama would I be, if I didn’t risk it all, for my child? For you, Ronan, I will risk it all for as long as you decide to keep me here. My life is yours. Your life is mine. I will live them both, for the two of us.
I’m home Ro. I hiked the inferno with your Tricia today. It was hot. It felt nice to be with her though. I miss her. She misses me. We both miss you. I missed you the rest of the day something fierce. I laid in your bed for a while tonight. I cried. I’m tired. I’m sad. But most of all, I am sorry.
This is all for tonight, my love. I hope you enjoyed your bedtime story. I love you. Thank you for being with me the past couple of days. I know you know I cannot do this, without you. I love you. Sweet dreams, baby doll. I hope you are safe.
xoxo

Though she be but little, she is fierce!

Ronan. Cancer doesn’t rest so why should I? I know I just got home from California, but I am off again. I’m on a flight as we speak. I’ve had this trip planned for a while now, but I just haven’t brought it up. I’m in route to Grand Rapids, Michigan to visit Dr. Sholler. I have some things I need to talk to her about. Some things that the wheels in my head, won’t stop spinning about. I told you I’m not in this to sit back and do nothing. I am in this to do big things and I have some really big ideas. I will share them when the time is right, but as for now I need to keep them to myself. Until I have this master plan of mine, all mapped out to a tee. I’ve been working non-stop on this plan of mine which is actually really all of yours. Everything I do is for you, fueled by you, and motivated by you. I don’t want any of the credit for this is not my plan, it is yours. I truly believe this. This is just the way this has to be. Go big or go fucking home, right? Without a doubt.

I have felt alright the past few days. It was actually o.k. coming home. I missed AZ. I missed our house. I missed my friends, although I didn’t really have time to see anyone. I had time to get unpacked, laundry done, repacked, errands ran, your brothers situated, and off I went to the airport. I am excited for the next few days here. I already have a good feeling about this trip. Although you know I would give anything to not having to do any of this at all. I would give anything to be back at home, taking care of you. That’s all I really ever wanted in life, was to be a mom to you and your brothers. I was so happy doing this. I would like to say a big fuck you tonight to the dickwad, who decided to turn my life upside down, in the worst way possible. I would also like to give a big fuck you to the person in front of me who has been slamming his seat into my legs for the past 3 hours. He’s about to taste the back of me hand. Kidding. Kind of.
I don’t have a ton to say tonight. I think I might have been in a not so good mood today. I think I found myself being bitter and mad at all that I am doing, in the name of my dead child. I close my eyes a lot when I think about this. I see your beautiful face and my heart and stomach both drop to the floor. I stop breathing sometimes during all of this. I have to remind myself to breathe and focus on what it is that I will do, because of you. I sit back and try to block out all the noise that exists in my world now. I sit back and I picture a long dark tunnel with a light at the end. I tell myself not to look sideways. I tell myself not to get distracted. I tell myself I will see you, once I get to the end of this very dark tunnel. You are the light at the end, that will be waiting for me. This takes discipline, self-control and patience. I can do this. I remind myself all the time how brave you were, though out this entire fucking fucked-up journey. How much you loved me. You know what kills me the most, Ronan? That you loved me so much, that you never doubted that I was going to get you better and save you. You trusted me so much that you getting better was never even a question in your mind. I failed you no matter what anyone says. I did. I don’t care how out of my hands this was, I still failed you and let you down. This is why I know I will not fail at this. I will make this up to you in the only way that I can, as of now. I think I would like to run another fucking marathon just because I can. Somebody sign me up. I’m pissed and I seem to take out my anger best when it comes in the form of doing something physical. Can somebody find me something harder to do? I mean, do you know how hard it is to live everyday without you? Anything else this fucking world throws my way just seems easy.
Ro baby. I am here now. I spent the entire day with Dr. Sholler and we had dinner as well. You know who else is the light at the end of this very dark tunnel? She is. She will change the face of this disease. Mark my words. I’ve never believed in someone as much as you, until now. As we were sitting talking tonight, it was all I could do to contain my tears. Tears of happiness, tears of sadness, tears of regret, tears of all things bittersweet. I wish I could talk more about all the things going on. It’s hard for me to write on here, but not really be able to write. I’ve got to wrap my head around a lot of things. A lot of things that are going to change the world. Are you ready for all of this?? I think that you are. I think that it’s time. I’ll never forget the words I whispered to you, right before you passed away. You were fighting so hard to stay on this earth with me. You waited until I told you it was o.k., to stop fighting. My exact words??? “Come on baby doll. Come with me. Let’s get outta this place.” Your heart stopped right after I said those words to you. You had to go to your other place. You were so brave, to listen to me. I wonder all the time if you were scared. I go back and forth with this a lot. I think you knew it was your time to go to your other place, but I know you were still holding my hand, refusing to let go. I know you are still with me, helping me do all of this. I know I could not do any of this, without you. I love you so much. Thank you for giving me the strength I need, when I need it most. I’m going to try to get some rest now. It’s late and I have a lot to do tomorrow here in this sweet little town with the most badass doctor, that ever existed. I brought her a gift today. One of our little F U Cancer shirts. Her reaction was priceless. She loved it, to say the least;) Lots of things to come, I promise you that.
Look what your lovie, Charisma did for you. She is rocking the red carpet, with one of your little bracelets. She is so beautiful on the inside and out. We are so lucky to have her love. I know she is going to help us change this awful world as well. Thanks, Charisma… for truly caring about my little boy, our family, and wanting to help these other kids, who are fighting this awful fight and who deserve a voice to help them. I love you.
G’nite, Ro. Sweet dreams. I miss you. I love you. I hope you are safe.
xoxo

I didn’t kill the intern. I only made her black out and throw up.

Ronan. Shitballs. I am beat. I spent yesterday with Quinn, hanging out at Charisma’s. We went for a hike. We lounged around. We played basketball and some other game that involved Charisma kicking my ass. I’m not used to losing, but if I had to lose to anyone, I am glad it was her. She kicks ass and is such a good friend. It was nice to spend time with her and have a break from everything. We were up in her room and I was watching her get ready as I sat on the floor. She came and sat with me, looked at me and said, “How are you so calm? So serene? You’ve been like this since the day I met you. You just have this peacefulness about you.” I told her I didn’t know. That I think to myself if I naturally wasn’t this way, I don’t know how I would survive something like this. I then said to her, “Do you see why my anger has to come out in my writing? Because I don’t get it out, any other way. My writing is how I release my anger.” She said she understood. How she doesn’t know how I do what I do. I looked up at her. “Can you believe this fucking happened to me? To him? To us?” “No,” she said. “It’s unfathomable to me.” Later that morning, I was sitting on her bedroom floor again. She yelled to me, “I have something for you. I just thought of it and I want to give it to you.” She went to her closet and came back with a ring. It’s dark, sparkly, and beautiful. “I want you to have this. To wear it and think of me, every time you do. So you know I’m always with you.” I tried not to tear up. I slipped it on. Rings never fit me. This one fit perfectly. “I love it. Thank you. I will wear it and think of you. You give me strength. I will look at it when I am sad, and try to be strong.” My friend. I am so lucky to have her. She does give me strength. She is a fighter, just like I am. I feel stronger when I am with her. She has this way about her that makes me feel like I am capable, strong, and even though you are gone, you are still always with me. She is good at reminding me of that. I am thankful for her and the lessons she teaches me. “To thine own self be true.” Right, my friend? This is so fitting for you. You are one of the truest people I have ever known. I love you.

Quinn and I arrived home last night, around 11. I feel into a fast, long sleep. I dreamed about all things sweet for once. All things sweet, except you. It is o.k. that you are not visiting me in as your own self. I know it is you, visiting me through your lovie. If that is the best you can do as of now, I will take it. I woke up today, on a mission to get shit done. I did. I ran to Starbucks for my breakfast of coffee and nothing else. I had a mini pow wow with one of my board members to catch her up to speed on some things and vise versa. I unpacked and did laundry. I met up with Rissy Roo to go over her list of intern things to do which mainly just consisted of getting our toes painted all purple and sparkly. She saw through my twitter that I was going inferno hiking later. She told me she wanted to come. YAY! I was excited to have her. We picked a time to meet up and go. She came over later in the day and we left for our little hike of the day. I think it was a little over 100 today, but I didn’t notice on our hike of all things inferno and fucking insane. I didn’t notice until Rissy was about half way to the top of the mountain and I realized I had been blabbing my face off. “Shit, Rissy. Are you o.k.?” She looked like she was about to pass out. “Yeah, I’m fine. I just need some water,” she panted. “O.k. let me know if you need to stop again.” We continued up farther. Me: Blah, blah, blah, blah, blah. Up the mountain I go. Is it hot today? I notice nothing. Is it hard today, this mountain climbing of mine? No. Nothing is hard anymore because I know what hard is like. I live in a world without you. That is hard. Nothing else, that I do, even compares to that. I look back. Shit! Rissy is bent over, trying to breathe. “Rissy! OMG. Are you o.k. Crap! I’m a bad boss! I should not have taken you inferno hiking!” I am scared now. “What if you have heat stroke! Let’s get you down to this part and I will turn around, go back up the mountain, down the other side to my car and come and pick you up!” “O.k.” she said. She got down, safely. I texted Rita who was flipping out. “Our intern is blacking out! You made her puke!” SSSSSHHHHIIITTTT!!! I haul ass down the mountain as fast as I can, to rescue  Rissy. I got to her about 20 minutes later. She looked much better. “I threw up. Want a apple carmel sucker?” she said. “I feel awful! But yes, a apple carmel sucker will make everything better. Are you alright?” I asked. She was. Thank Ro for that. I didn’t kill my little intern. My board would have NEVER forgiven me for that one! Our itty bitty is PRICELESS to us!! She was a good sport about the whole thing, but I don’t think she will be going back into the inferno, anytime soon. I am just truly glad that she is o.k.!

My Rissy is getting ready to go on her mission trip, to Wales in just about a week with her Young Life group. She blows my mind. She is 20 years old and is already making such a difference in this world. I know what I was doing at 20 and it was not going on mission trips and working my butt off for a children’s cancer foundation, for free. Her mission team still needs about 9,000 dollars. I know that I have my issues/anger with many things in this life, but I will ALWAYS support Rissy’s beliefs and what it is she is doing, because it is her heart and soul that I love. Her heart and soul that I don’t judge. Our spiritual beliefs/differences are something I embrace, as I know we are both opened minded enough to listen and learn from each other. I have taken the time to get to know this sweet little soul and I am so proud of her and so thankful that I can support her in whatever way she needs support. I have heard through the grapevine that due to some of my “anger issues,” that some people cannot support me. To each their own. But if you cannot support me, then maybe you can open back up your hearts and your wallets (hee hee) to support Rissy and her Young Life groups mission trip. I know even the smallest donation would be greatly appreciated by your God, so very much. I plan on making my own donation to help Rissy reach her goal. I know this would make my Ro, very happy.

Here’s the info to help Fund Risssy’s, The best intern ever, mission trip: Checks can be mailed to: Scottsdale Bible Church Marissa Rahm 7601 E. Shea Blvd. Scottsdale, AZ 85260 Please specify that you are donating to the Wales College Group The money being raised will go towards the following: Partnering with Young Life to host a camp for students. Provide labor, including cleaning, clearing tress, maintain “man- made” ponds, build picnic tables/chairs; outreach/evangelism. The link for Young Life is also below. http://www.younglife.org/us Love you, Rissy girl. I will always support you in life, whenever you need it. Unless you become a stripper;) Then it’s game over.

Ro baby. This is all for tonight. I’m wiped from the day. I have so much more to say as the thoughts about you and all of this are never-ending tonight. I’ll save them for a later date. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll. xoxo

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Hi. I’m in L.A. I like it here. Little 3,4, and 5 year old boys, who look like you, do not exist on Venice Beach.

Ronan. It’s been almost a week since I posted last. I know this usually means I’m in a dark space; but for once this has not been the case. It’s not that I have not been thinking about you, every waking second, because I have been and I always am. I guess I just needed to give myself a little break so I could survive the last week of Coronado Island of 3,4, and 5 year olds, everywhere. Your daddy made it in time to spend the evening of Father’s Day with us. Macy filled the role of the surrogate father for the day and as always, did an amazing job. She was supposed to fly home on Sunday night, but somehow I talked her into staying an extra day. It had nothing to do with the lazy day we spent laying on the beach, soaking up the sun, either. Well, o.k. that maybe had a little something to do with it, but I also know that she could sense that I needed her and she did really want to spend some time with your daddy as well. It was an o.k. day. We made it the best we possibly could for your daddy. It was hard to look into his eyes though and see the pain pouring out of them. A father should never be without any of his children, on Father’s Day, but your daddy, most of all. He is too good of a daddy to have to carry this never-ending pain around. I’m always so sorry and so sad for him. I don’t know that I’ll ever be able to look at him again and not see the constant sadness that fills his eyes, even when he is smiling. I know those eyes all too well as they are a reflection of mine.

The rest of the week was pretty low key. Lots of beach time. A little surfing. Some running. Basketball. A movie. Sleeping. No Ambien for me for a couple of weeks now. Dr. JoRo will be proud of that. I’m kind of proud of that too. I got a text message on Wednesday from our lovie, Charisma. It was more like, “OMG. When are you leaving San Diego? I can’t believe we did not meet up! Wanna make a trip to L.A. to see me?” You know how I LOVE spontaneous plans. I texted her back. “Yes. Let me work my magic. I’m sure I can figure something out. I’m supposed to go back to AZ on Saturday, but let me talk to Woody.” I got home and told your daddy about what had come up. I think I spun it to him as, “Wooddawg. If I don’t go to L.A., who knows when I am going to get to see Charisma again and it’s already been way too long. She’s leaving for Austin to shoot the new series she just got picked up on, to become a regular. I NEED to give her a congrats hug and see my friend.” It didn’t take much convincing on my end. I offered to take one of your brothers with me as they could use the time apart anyway. Of course your Quinny chose to go with me and Liam chose to stay with your daddy. Quinn cannot seem to be separated from me and Liam seems to be stuck to your daddy like glue. Quinn and I hopped in the car super early on Friday morning to drive to L.A. It was a reunion that showed me much too much time had passed since I had last seen my friend. The last time I spent with her, was when she came out for your services and you know I don’t remember any of that. I’ve really missed her.

Quinn and I arrived and it felt so good to get the frick out of Coronado, and a change of scenery. There are no 3,4,5 year old boys, roaming around the streets of L.A. who all look like you. We spent the day at Venice Beach. I soaked up a day of sunshine with Charisma while your brother and D surfed. I soaked up the homeless bums who filled the boardwalk of Venice Beach. I caught up with my friend. I breathed. I exhaled. I needed to, otherwise I was going to burst. We had a nice lunch and an even better dinner at some to die for Mexican food restaurant. Everyone is snug as a bug in a rug now and sound asleep. All except me. My thoughts are swimming with all there is to do. How much I miss you. The awful way I left your daddy today which was which one of us, was going to take Ronan home. Which meant, who is taking your urn home full of your little body. Your daddy did. I took your GiGi with me, instead. We both felt you would be safer with your daddy. The fact that this conversation is now part of our normal lives leaves me sick to my stomach in a way that I am too tired to explain tonight. I’m getting sleepy. It’s 3 a.m. I mainly just wanted to check in. I know how my lovely little blog readers get when they don’t hear from me, for a while. They worry. They are the sweetest and I am thankful that they care so much. I am o.k. And for me, o.k. is as good as it gets. I am happy to have spent today in the presence of someone whom I think, hung the moon. You don’t get much better in life, than my dear friend, Charisma. She reminds me of all the pain in the world, while pointing out the beauty as well. She reminds me that they can coexist in a peaceful manner. She makes me laugh with her crazy car dancing and with her, the smiles are always true. There is no faking or forcing. There is no judgements or disappointments. There are only journeys and love. I like my world when I am with her. It gives me the break that I know I need and I know I deserve. She loved you so much.

I love you, Ronan. So much so, that I know we are going to do everything it is, that I want to do for you. I don’t care if it costs 150 billion dollars. You cannot put a price on our love and the power it has to change this cancer world in the way that it so desperately needs to be changed. I miss you. I love you. I hope you are safe. G’nite baby doll.

xoxo

A Happy Father’s Day to who?? Please remove the word, Happy. Let’s call it what it really is. Father’s Day sucks balls when your child is gone. I know Woody would agree. Love you, Daddy Woo.

 

 

Ronan. It’s Father’s Day. Of course it is. The holidays do not go away or stop, like I wish they would. I am sorry you have to be separated from us everyday, just not on days like Father’s Day. What makes today any different from any other day of missing you? Nothing. I don’t think we will be celebrating tomorrow. How do you celebrate with a dead child? I don’t really think that you do. It’s hard enough to watch all the other people do it around you because everything feels so confusing and lost. I don’t think we will celebrate tomorrow. I think we will get through the day, as best as we can. I think that’s good enough for me. I hate tomorrow for your daddy. I know Father’s Day will never be the same for him again. And he is the best father out there, which makes this even more cruel and inhuman. I am so sorry to you both.

I still have Macy here. She will be here until tomorrow night. Thankfully. She will make tomorrow, a little less painful and sad. She will find a way, to have us all in stitches with her effortless ways of loving us with such depth and soul, that she is capable of making me feel like I can grieve and breath all at the same time. Not many people are able to do that for me. Without the judgements that come along with all of this. Macy is not just our friend. She is our family, no questions asked. I am so very thankful, that she came into our lives when she did. I am so thankful that I got to watch you fall in love with her and she fall in love with you. I am so thankful that she has not gone away.

I did not write the following below. Rita sent it to me tonight when her ESP, told her that I was still extra sad. She of course, was right. I think I’ve read these words before. I think every single thing written below, makes perfect sense. I wish so badly, that I was only a reader and had no idea what any of the worlds below, truly meant.

By: Betty Baggott, Alabama Baptist BOD

· I wish you would not be afraid to speak my child’s name. My child lived and was important, and I need to hear his name.

· If I cry or get emotional if we talk about my child, I wish you knew that it isn’t because you have hurt me; the fact that my child died has caused me tears. You have allowed me to cry, and I thank you. Crying and emotional outbursts are healing.

· I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day my grief is all over, or that if I have a bad day I need psychiatric counseling.

· I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy, and I wish you wouldn’t compare it to your loss of a parent, a spouse, or a pet.

· Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me.

· I wish you knew that all of the “crazy” grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, and the questioning of values and beliefs are to be expected following the death of a child.

· I wish you wouldn’t expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be “cured” or a “former bereaved parent,” but will forevermore be a “recovering bereaved parent.”

· I wish you understood the physical reactions to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses, and be accident prone – all of which may be related to my grief.

· Our child’s birthday, the anniversary of his death, and holidays are terrible times for us. I wish you could tell us that you are thinking about our child on these days, and if we get quiet and withdraw, just know that we are thinking about our child and don’t try to coerce us into being cheerful.

· It is normal and good that most of us re-examine our faith, values, and beliefs after losing a child. Please don’t tell me that God must have needed him or that he is in a better place…I needed him here and what better place is there for a child then with their parents.

· I wish you wouldn’t offer me drinks or drugs. These are just temporary crutches and the only way I can get through this grief is to experience it. I have to hurt before I can heal.

· I wish you understood that grief changes people. I am not the same person I was before my child died, and I never will be that person again. If you keep waiting for me to “get back to my old self,” you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try to get to know the new me – maybe you’ll like me still.

Everyone’s grieves differently. I think sometimes I write on here, and my anger sounds like I am judging others who may be going through something similar to me, but who are dealing with it the complete opposite as I am. I don’t mean to be judgmental or say the way someone else chooses to deal with losing a child, is wrong. The only right way to go through something like this, is your own way. I get angry a lot. I use my writing as an outlet for my anger. It that comes off as judgment, well, that is a failure on my part. Sometimes I have a hard time with my words, as my thoughts tend to get ahead of me and I may not explain them in the way that I wish they were understood. I am human and I make mistakes. I am trying to learn and grow as much as I can from this. A lot of growing pains come from losing a child. The bottom line is I have lost a child, I don’t really know who I am or what I believe in anymore, besides Ronan. I am o.k. with that because I have no doubt that I will figure it out, as long as I continue the search for what it is, that I believe he is leading me to. I am not following the lead of anybody else on this, except my heart and Ronan’s. Those two things, as of now, are good enough for me. To each their own, right? I think so. But it does upset me when I have people tell me that if I don’t believe in God, I will not see Ronan again. It makes me angry but it also makes me very sad that people out there, actually believe that. What kind of God, would be that cruel? It’s not any God I have ever known or will ever know. If you are going to say things like that to me, or whisper those words to others around you, behind my back, then I cannot have you in my life. Those words, get back to me. I hear all the whispers and they spread like wildfire. Those are not acceptable words to say or whisper about to a mother who has lost her child. Ever. So please, exit stage left. I will not tolerate such hateful words. I might judge you right now and say you should reexamine what it is, that you are whispering. That you should look deep inside yourself to see, what makes you so ugly, that you would say such things, no matter what or who you believe in. Those are ugly words.

Ronan. I am going to say goodnight now, before I start calling people motherfuckers on here. Please make tomorrow, as gentle as possible for us all. I love you so much. Sweet dreams, baby doll. I hope you are safe. G’nite little one.

xoxo

Hello, 3:43 a.m.

 

Ronan. I am finally getting tired. I might be too tired to write so I’ll just say this. Wes Anderson is a genius. End of story. Officially the shortest post ever. I miss you. I thought about you a lot today. It’s hard not having you here, to do everything, that we did. I miss your laugh, so very much. Sweet dreams baby doll. I miss you. I love you. I hope you are safe.

xoxo

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New friends and extra lipgloss

Ronan. Now matter how low I get or how bad things sound, the bottom line is I will always put on lip gloss to go meet another cancer mom and her babe. That is what happened today. I got up out of bed. I spent the morning cleaning and doing laundry, getting things spotless for my sanity and Macy’s arrival. I showered. I dressed. I had planned to take your brothers to a movie during the afternoon. I checked my FB which I don’t really do, that often. I saw I had a bunch of messages on it. I only clicked on one. It was from another NB mom that lives in California. She reached out to me a few months ago, saying they were in Sedona and wanted to know if I would drive up to meet them. I told her of course, but our plans fell through due to her older boy getting sick. I hadn’t heard from her since, until today. Her message said she knew this was last-minute, but she was in San Diego for her little guys treatment and was wondering if I would like to meet up for a bit. I hesitated for a second, but then messaged her back and said of course. I went in and asked your brothers if we could skip the movie to meet up with this little boy and his mom. They both said, o.k. They are such great boys. They both asked a lot of questions. Who was this boy? How old was he? Did he have the same kind of cancer, as Ro? Does he have any brothers or sisters? Where does he live? I didn’t know much, but I answered them the best that I could. We piled in the car and drove off to meet our new friends at the train museum.

Ronan. Today was the best day that I have had in a long time. It’s during times like this, that I know you are still around. You could not have picked a more perfect day, for me to do the things I did today. Just when I am feeling in such a slump and so freaking sorry for myself, you give me a gift like today. A day where I got to hang out with the sweetest little 3 and a half-year old who reminded me so much of you. Where I got to look into his mama’s eyes and it was an almost unspoken conversation. I saw eyes that reminded me why I have to continue to do, what it is that I am here to do. I needed a good reminder and today I got all that and more. This mama looked at me a few times and asked if I was alright. If it was hard for me to be there, with her little boy. I just smiled and told her, “No.” I do really well in the cancer kid world, Ronan. I do much better in it, than the normal world that is so foreign to me now. This world fills me with a peace and comfort that I cannot explain. I spent the day with your brothers, Teddy, and his most beautiful mama. We looked at trains. We chased balls. We held hands. We laughed. We giggled. I felt alright. I felt alive and brave and I got all of this from a little boy who has the weight of the world on his shoulders, but you would never know it by the look on his face or the laugher that filled the air. I listened to him say things like, “Come on my friends!” as he reached for your brothers hands. I got to hold his little hand while we were crossing the street. I miss little hands, so very much. I talked to his mom a bit about what they have gone through. I listened to her words and the way they have had to fight for everything as far as Teddy and his treatment. The way she is the one, presenting studies to the doctors, demanding scans when they don’t want to do them, and answers when nobody wants to give them. I know I can fix this world and make it better for these families. I am more motivated than ever, to get this done. I have the vision. I have the dream. I will make this a reality. I will make this world less scary for these families. Today was a reminder that I cannot give up. That I need to stop feeling so sorry for myself because there are people out there who are here, fighting and who deserve better than what it is that they are getting. I know without a doubt, what it is that I am here to do and why. It’s what you would want. It’s what we should have had. It’s the reason why I can’t stay in bed and not wear lipgloss anymore. I’m not giving up on this world, these kids, or these families. I may take a few days here or there, to slump down into a really dark place, but I promise I will always come back to fight again. Thank you for the reminder today. Thank you, to Teddy and his mom for stealing my heart and giving me back that hope word just by looking in their eyes. That’s what I saw when I looked into their eyes today, Ronan. Eyes filled with such hope that I have decided I cannot ignore this word any longer. I think I can start to let this word back into my life again. Today, I felt hopeful, calm, and brave. Today, I felt you everywhere. It was a good day.

Macy is here. Quinn and Liam are happy. We all snuggled on the couch and watched a movie. Quinn is sleeping in-between your Macy and I. He fell asleep with the biggest smile on his face. I know why. It’s because he saw his old mom today. The one that can smile, laugh, and be playful. The one that can be brave and who can sit back and watch your brothers and who knows how they are going to go off and do amazing things in this world; all because of you. I can be alright in this life, Ronan because of days like today. Thanks for never giving up on me, no matter how crazy I may get over this never-ending pain. Thank you for giving me a good day, when I needed it most. I love you. I love you and miss you so very much. I hope you are safe. G’nite, little one. G’nite to our new friends, too. Thank you for being brave enough to reach out to me and for being able to see the light, through all of the darkness. The little rays of light, are the two of you.

xoxo

Very well said. The madness has to stop. ACS is a JOKE!

 

 

http://curechildhoodcancer.ning.com/profiles/blogs/my-thoughts-about-the-american-cancer-society?xg_source=activity

It’s been a no lipgloss past few days…

Ronan. What is this life without you, like? It’s like I cannot remember what happiness felt like at all in my life. This pain is so heavy that I cannot remember it any other way. I try so very hard to remember what it felt like, to hold you after I just had you. I want to remember and feel the happiness that I know I felt, but all that does is bring me to tears for remembering bringing you into this world and watching you leave it, go hand in hand. It’s cruelest thing to experience and feel. I am back in that very dark space of feeling like I am buried alive and I don’t know how I am going to find the air to breathe. I know I go here quite a bit. I imagine it’s hard for others to read about and for those closest to me, to watch me go through. I know all of this. Imagine being me, and feeling all of this and living all of this. Imagine being me and thanking your lucky stars, that you are not.

I did a lot of things today, that consisted of doing a lot of nothing at all. Your brothers had a day with their Mimi and Papa. This left me to my own project solo mission Maya. Mission complete. Mission success? Mission failed? I am still here I guess. Mission still standing, but barely breathing is good enough for me. I had a lot of conversations today. Names shall not be revealed. I said a lot of things. I meant them all.

Phone call number one went a little something like this, but not exactly like this. Ring, Ring!!!!!!

I picked up the phone. I rarely do this for anyone. I pick up the phone for about 4 people in my life, consistently. The conversation was long, so here is the short version.

-Maya. I feel like you are not wearing lipgloss. I don’t know what to do.

I peel my matted hair, off of my pillow. Shit. I think I’m so far gone, that I don’t even realize that I have not really worn lipgloss, in about a week. “Shit! I don’t know how to tell you this, but I have not worn lipgloss in a week. OMG. And, you should see my nails. They are chipped, chewed, and they have been like this, for over a week now. DO NOT TELL FERNANDA.”

-What are we going to do, I don’t know what to do. You know I’m calling Dr. Jo, as soon as I get off the phone with you, right?

“Yeah, I know.” I whispered. Now I am crying. I hate crying into the phone when I am trying to explain to somebody, the reasons that I am not going to kill myself.

“You know what I’ve been doing, since I got here? I’ve been being still (besides the marathon but exercise doesn’t count) I’ve been sitting still, like I know I need to do, and it does NOT feel good. If fact, I feel worse than I have felt in a long time. I know this is part of the process, but I don’t think it’s working for me!”

- This sounds like depression. You distract a lot. You are always doing. This is maybe what you need to do?

“Well, if this is what I need to do, then this blows. This does not feel good or healthy to me. I like being busy when I am doing busy things. It may be a distraction, but I think of Ronan in everything that I do. I hurt in everything I do. But the businesses helps me to survive.”

-Please don’t die. Please put on some lipgloss. Have you been showering?

“Yes. But only because I am hygienically OCD. Otherwise, I would not be. I’m going to go now. I need a manicure and I don’t think I’ve eaten in 3 days.”

-That is not good. Go and eat. I love you, little friend. Know that.

“I know.”

I run out the door as fast as my weary body will take me. I need a taco. And some chips and salsa, asap.

I know I cannot come back here, next year. I came here really only for the sake of your brothers. And because this is our one special thing that we do consistently, every year. We’ve been doing this since your brothers were 2 months old. It’s been our family getaway, our time together, our peace and your daddy’s way of working his butt off, so we can do this great family thing, and feel good about this is the reason why, he works 70 hours a week. I don’t know what we will do next year, but it won’t be this. This family tradition is going to have to change, because our family is no longer the same. All I want to do here is sleep and cry and sleep and cry. I have no motivation to do anything at all. After an exhausting day of doing nothing, I got your brothers home and spent a few hours, hanging out with them. They both drifted off to sleep fairly early. This leaves me alone, in the dark, watching them sleep. I pray to you for a long time. I close my eyes. My phone rings. I feel a real smile come across my face when I see who it is, that is calling. I am aware when real smiles happen in my life now. It’s as if you are putting them there. My real smile, makes my heart float. I pick up the phone.

-Lover!!!!!!!! Do I get to see your face tomorrow?” purrs the voice on the other end.

“Hi, Macy. Please tell me you are coming tomorrow. Please. We can’t wait to see you.”

-I can’t wait to see you all! I miss you and the boys so much!!

“It’s all Quinn and Liam have been talking about. I am going to feed you a lot of hummus, coke and candy.” (that’s all we lived off of, last summer)

-I will see you tomorrow! Give Q-dub a squeeze for me, since I know he’s right there.

“Goodnight, Macy. I love you.”

I hang up the phone. Macy will be here tomorrow night. Macy will make everything better for a few days. Macy is the life raft I need right now. I am thankful. I fall asleep with a smile on my face.

Tomorrow is here. Happy New York Miss Macy Day, to me. Today is guaranteed to be a better day. I love you sweet boy. I miss you. I hope you are safe.

xoxo

  • Instagram is my BFF

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