That hair, that hair, that hair…

 

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

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

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

 

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Miss Taylor, how I love you so.

I wish this is what the media would focus on. Thanks to one of my little Tweethearts for sending this to me.

I love you, Taylor. Thanks for making  my day a little brighter and putting a smile on not only my face, but this sweet girls as well. I love you to the moon and back.

xoxo

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“Do this for Ro.”

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Ronan. I survived your 22 months. It was actually an o.k. day. It didn’t start out that way. I woke up, upset, crying, worrying about you like I always do. I swear I worry about you more now than I did when you were here and alive. Your brothers had basketball playoffs. They were the only team undefeated in their league. Your daddy spent all week practicing with them, coaching them, playing with them and their hard work has really paid off. On Saturday, they had an early morning game and if they won that, they would head into the final championship round. Your daddy and I spent the morning giving our usual pep talks and telling your brothers how proud we are of them. Off to the game we went and you could feel how excited they were to be playing in the playoffs. Before the game started, I walked on to the court, gave them both fist bumps and said, “Do this for Ro.” They both smiled and said, “O.k. mom.”

I sat back and watched your brothers as they had the time of their lives as they played their little hearts out. Both of them played the best games of their lives and the first game was won. We took them for lunch after as we had a couple of hours before their next game started. We talked in the car about how great they did, how great their whole team did, and how proud we knew you were. I tried not to get too sad as we talked about you and did my best to keep a smile plastered on my face. It wasn’t hard but talking about you and not having you around, still hurts for me and still takes me breath away. I would so much just rather have you here but beggars can’t be choosers, as they say. Your brothers went into the final game wanting to win it all so badly. That is exactly what they did. I watched them fight for something that they really wanted. I watched the fire and passion pour out of them as they played. I know much of this was fueled by you. It made my heart skip a beat, watching them on the court. Basketball has become their passion and outlet. I truly feel as though it has saved them in a way. The smiles on their faces after the game and the days to follow have been smiles that I will never forget. I know I say this all the time, but I am so proud of them. I am so lucky to have them. They truly are the best little boys.

Things here have been busy, but I’ve been trying to keep things as calm and peaceful as possible. I’ve started seeing Dr. Schwartz every week. Today, we sat in her office and talked. I asked her when she would be able to strip my membranes, to get this baby girl out. She asked if I was miserable. I told her no, that I just had a lot of anxiety. I told her about the support group I went to last week and how pretty much everybody in the room had a baby that had died of still birth. She said she could not believe I went to that. She sat down with me and told me she was sorry. That if I was that anxious we would of course figure out a plan. We picked out a date. I felt a little better after leaving there. She told me not to go to any more support groups as of now. I told her I would not, that I would just continue to see Dr. Jo, one on one. That seems to work best for me anyway. Those support groups have never worked well for me. It’s great to connect with other parents, but having to listen to everyone tell their stories is beyond heart wrenching and I’m not really in a strong enough place where I am o.k. with it. I wonder if I ever will be.

I had a little phone call today. I don’t want to talk about it too much as of now, but we’ve got some crazy big things in the works. I feel very blessed and excited to have such big power houses involved with your foundation. Not only powerhouses but powerhouses with the BIGGEST hearts of all. That makes such a difference to me. After my phone call, I ran to the post office to mail out some bracelets. I’ve become pretty friendly with my post office lady due to being there all the time. Today, she asked me what I was so busy mailing off. I told her the rubber bracelets I wear around my wrists which are for my son who died. She looked at me and bluntly goes, “How are you doing with that?” I just told her, “I’m not.” She told me that it will never get easier and confided in me that she had lost 2 sons. I told her I was so sorry. I thought to myself, another mom who knows this, gets this, and is not scared to tell me it doesn’t get easier. Then to my surprise she told me a sorry wasn’t necessary. That her boys where exactly where they should be, with god. My stomach dropped. A year ago, I would have lost my shit on my blog and ranted about what in the world is wrong with all of these delusional people, that think this way. If somebody tells me this, who does not know what it is like to lose a child, I might still punch them. But when it comes from somebody else who has lost a child, I am not going to judge that or tell them their way is wrong and mine is right. If that is what she truly believes and that is what gives her peace, more power to her. I quietly told her that I didn’t like that saying. That there is no better place for my son to be, but with me. I can agree to disagree with her on that one. I walked out of the post office thinking about her words. Not mad, not sad, just accepting. Obviously this woman has a stronger faith than I do and I am glad that she does. What works for her is not for everyone. What works for me, is not for everyone. At the end of the day, both of us are still here and we are surviving this extreme loss, day after day after day. That makes us both fighters in our own way. We both know how this pain feels. We both know this pain will never go away. We should all be proud of ourselves for finding our own light at the end of the tunnel that gets us through this; no matter how differently it may be.

I ran and saw your Sparkly for a bit today, aka, my peace. He is the only person that I feel complete and utter peacefulness around, Ronan. It’s been this way since the very first time that we met him, just the two of us. I’ll never forget the wave of calmness that washed over me while I was holding you in my arms and he came bursting around that corner. I knew that instant, that he was going to take care of us, no matter what happened and he has. I will forever be grateful for the bond between the two of you and now, to have him be the godfather of your baby sister… that is truly such a gift. He knew I had a hard week last week and was relieved to see that I was doing a little better this week. We talked about you and your Poppy sister much of the time. He kept telling me how excited he is for her arrival. I am so excited to meet her as well, but I might be even more excited to watch him hold her for the very first time. He has been with me in death and now this new life. I know a lot of people have, but he really has seen me through everything. The worst of the worst and now the best of the best. He laughed at the way I was touching my belly and made sure to throw in some smartass remark about how big it has gotten. I know he only did this to see me laugh, which I did. Your Sparkly always has a million tricks up his sleeve to make me smile. I love that about him. I told him how I couldn’t wait to have a little one to take care of again. I know it is going to be so good for my heart. I know she is going to be so good for everybody’s hearts. Thinking of this always makes me smile. The sweetest part of this for me will be seeing the way she brings a light into so many of our worlds. Especially your Daddy and your brothers. I know she truly is a gift from you and I will find comfort in that. I left your Sparkly with a smile on my face. Just the way he likes to see me. I am glad I was feeling alright enough today, to do so. I don’t like the days that I have to leave him any other way.

Alright my spicy little monkey boy. I have to get some things done around here. I miss you. I love you. I hope you are safe.

xoxo

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Today is 22 months since you left this world.

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Ronan. 22 months seems impossible. 22 months seems like a joke. 22 months does not seem real. We all miss you so much.

Today, is also Macy’s birthday. I know you would not want me to be sad on this day. I know if you were here, we would have woken Macy up by calling her on the phone and singing, “Happy Birthday,” to her. I will have your brothers do this. I’ll think of you, while they are doing so. I know how much you love your Macy. How much we all love her. She misses you so much.

I love you, Ronan. Happy Birthday, Macy. You are my other soul mate in life. The sister I never had. Thank you for always making us smile and laugh, even on the hardest days. I always say you are one of the most special gifts that Ronan left us.

We love you so much.

xoxo

http://www.youtube.com/watch?v=LzDPKBk18Zg

A bedtime song for you and your Poppy sister, too

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This is the song your daddy has mastered for your Poppy sister. It sounds beautiful. You would have loved it. I’m tired tonight. I had a hard day. An o.k. night due to being with good, old friends and watching your brothers rip it up on the basketball court on this rainy night. Wish I would have had you on my lap to cheer them on. You would be so proud of them.

I miss you. I love you. I hope you are safe. G’nite baby boy.

http://www.youtube.com/watch?v=e4uTEhDqa_s

 

Rain, rain, don’t go away…and please don’t let Poppy be born dead.

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Ronan. It’s the middle of the night and I can hear the rain. It’s pouring down outside. I just went to check on your brothers and in doing so, I have to walk by your empty room. I peaked inside. Nobody was there. That reality never gets any easier for me. I think I ended up losing my shit yesterday. It was really triggered a couple of days ago when I came home in the middle of the day from somewhere and I walked into our quiet house. I had been working at our kitchen table and I had left a bunch of packages on top of it, right where you would normally be sitting. As I turned the corner to our kitchen, I thought there was somebody sitting in your spot. I thought it was you. I imagined it was and how I would react. I imagined scooping you up, kissing you all over, crying tears of joy, and saying over and over that I always knew you were really coming back. This image has haunted me for days now. I was out all day yesterday, being productive and came home after a long day of trying to be a part of this world. That’s when I lost my shit and could do nothing but pace our house, crawl in my bed, and cry for hours on end. Your daddy came home to see me in bed. I had gotten a text from my mom friend, Sarah, asking if I was going to support group tonight at Dr. Jo’s. I told her no, that sitting around listening to everyone talk about their dead kids, was not a good place for me. Especially as of now, due to the life that is growing inside of me. Support group is hard anyway but it’s even harder to go being pregnant. Sarah said she selfishly wished I was coming as she was wanting to see me. I wanted to see her as well and her partner, Rae Ann. Noah’s mom’s. I sent Jo a little text to ask if she was leading group. She said she was and she could see me before hand as well. I threw on some appropriate clothes (pants included) and hardly said 2 words to your daddy as I headed out the door with my tear-stained cheeks and blood-shot eyes. Our house was screaming at me and I could no longer take it.

I got to Jo’s a sobbing mess and told her what was going on. She sat, asked me some questions, gently reminded me of all the stress/crap/petty fucking stupid fucking shit/insane pretend problems that normal people have that I don’t understand anymore that I’ve been trying to deal with and understand/the fact that I’m about to have a baby/ and how your two years is approaching. No wonder I am freaking the fuck out. She knows these next few months are going to be hard. May is right around the corner, you know. I just sat and cried and talked when I could. Before I knew it, it was time for group to start. I had decided to stay mostly because I just wanted to be with Noah’s mom’s. It was a pretty full group. It went a little something like this. Stillbirth, me-cancer, stillbirth, stillbirth, stillbirth, 8-month old unknown cause of death, 3-year-old just stopped breathing, 8th month old-can’t remember, still birth, still birth, murdered child, 8 month old again. Of course you know why I think Poppy is going to be born dead. Because I live in the world of childhood cancer and still births. I talked a little but was mostly too upset to even tell your story. Support group never gets easier. The death of your child, never gets easier. It’s not something we will ever overcome. It’s not like AA, where we can recover from our disease, start over, and live a clean, healthy life. Our disease never goes away. I think about this a lot, especially when I am in a group setting like tonight. How the world is so accepting of people who are trying to recover from alcohol or drug abuse. How there is so much love and support out there for them over something that is a choice for most people. I understand that being an alcoholic or abusing drugs is an ugly, powerful disease in life, but most people, not all, make the choice to do these things. None of us parents, made the choice for our kids to get sick and die, yet there is so little love and support out there for us. Society doesn’t want to acknowledge us, Betty Ford doesn’t fit for us, the government doesn’t care about us. So where do we go and what are we left to do, to get through this?

In my dream of all dreams, after I get this care center built, I want to help Jo with one of her little dreams. That is creating a safe place, almost like a rehab for these parents to come to that have lost a child. A safe place for parents to come, with the proper counselors and proper kind of compassionate care that they so need. A place where bereaved parents can try to process their grief before being shoved out into the cruel, harsh, happy go fucking lucky world again where everyone has a living child, except for them. A Betty Ford for bereaved parents in a way. I would have went to a  place like that. I think it would have helped me a lot in the beginning. Oh, people wanted to send me away alright. But it was only to a mental ward where that shadow would have haunted me for the rest of my life because I’m sure I would have been given a permanent  diagnoses of bullshit that would have followed me around forever. This is a path of life that we as parents, will never get off of. There is no changing our course. There is no bringing our children back. We are stuck here, forever. It’s like the ultimate prison where we as parents have done nothing wrong except for love our kids with everything we have, yet we are serving a life sentence for a crime we didn’t commit. (well, unless you are someone like Casey Fucking Anthony, then you should rot in hell a.k.a. a real jail cell for the rest of your life)

There is no place for parents to go so we are all forced back out into a world that does not exist for us and we are expected to be o.k. Hey, our kid or kids just died but we’ll get over it, right? Life just goes on and we are expected to be strong because being strong is the only choice we have. It’s wrong. We all need a break from being this strong once in a while. Being this strong can be torture at times. Bereaved parents need a safe place to go where their children are remembered and they can take a break from being strong for a while. As much as I think support group is great, a tangible place where parents could go to for longer period of time than an hour a month, would be so much freaking better. Add it to my list of big dreams. It seems so obvious to me and I don’t understand why it doesn’t already exist. I guess it’s because Dr. Jo hasn’t done it yet and she is the only one fit for this job. Someday, I promise this is going to be a reality and I will do whatever I can to help her with this.

I have to run today, Ro baby. I have an interview in a few minutes. I miss you. I love you. I hope you are safe. Thanks for the rain last night.

xoxo

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

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

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

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

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

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

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

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

xoxo

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

I heart my Tweethearts. They are insisting that I post this. I shall listen.

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I wasn’t going to pimp this because I feel like you all work in a sweatshop for me or something but my die hard Twitter fans are demanding that I do so. I’m going to post this for them. They truly are the sweetest and have been voting like mad. It’s another blog contest I was nominated for. The voting is unlimited so if you feel like it, vote away. It ends April 15th. You can vote as many times as you want, until your little fingers fall off or until you get busted at work;)

Hey, awareness is awareness is awareness. That’s all that really matters. Awareness=Funding=Research=Cures

Childhood cancer needs all the help it can get. Love you all.

xoxo

http://www.arizonafoothillsmagazine.com/battle-of-the-blogs/show_subcat/1.html