I still love this list. How to Live like a ROckstar

 

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People have asked, what they can do, besides the obvious which is donate to Childhood Cancer, to help make a difference in this fight. If you want to donate to Ronan’s Foundation, even if it is just a dollar; please do so. I have almost 12 million hits on this blog. Can you imagine if every person that has read this, donated just one dollar? Or five? That could do so many amazing things in our efforts to support research for Childhood Cancer.

I’ve thought up a list. A very unconventional list, because it is not just about bringing awareness to Childhood Cancer. It is also about living a life that Ronan would be proud of. It is about living a life, that Ronan would have given anything for; to LIVE. It is about being the BEST version of yourself, that you can possibly be. This list will grow and I hope it only gets better. I’m still young. I still have A LOT to learn, mistakes to make, things to regret…. but as of now, this is my list. This is a list that has been inspired by losing the life of my son and trying to become a better human being, because of it. I hope someday, that I am able to live my life doing everything I have written below. This list, gives me hope, in my darkest hours.

1) Be thankful. For all that you have. No matter how much or how little. If you have kids, be thankful that they are healthy. Nothing else matters. If you don’t have kids, be thankful for your health or the health of the loved ones in your life. Just be THANKFUL. And know what it truly means.

2) If you’re not happy, change your life and become happy. Happiest people are the most beautiful. Become the happy person you want to be. Life is too short, not to be happy. Ronan almost lived 4 years on this earth. I’ve never in my life met a happier person then he was and look at everything he endured. Cancer never got in the way of his happiness, until the last week of his life when his life was no longer his to live. He was ROBBED of his happiness. You do not have to be; so stop complaining.

3) Volunteer. At a Homeless Shelter. At an Animal Hospital. At The Ronald McDonald House. Whatever you are passionate about. Just do something to make a difference. Volunteer at a hospital…. there are so many sick babies who need people to hold and love them. Get involved. DO SOMETHING. ANYTHING.

4) Donate BLOOD or PLATELETS. It’s not that hard. REGISTER to become a BONE MARROW DONER. You could help save someone’s life.

5) Scream about Childhood Cancer Awareness with me until people start to listen. Write to local companies, small companies, big companies, your favorite Celebrity, the Media, Congress, The President, The White House, anyone you can think of; until people start to listen. If there are enough of us screaming, they will have to at some point. The lack of awareness/funding is UNFUCKINGACCEPTABLE. Media is very powerful. We have to get them on our side.

6) Educate the people around you about how this can happen to anyone. If you want your child to get a Urine Test, ask for it. Knowledge is POWER. Learn the FACTS about Childhood Cancer, like it is your bible. Know what it is you are passionate about, and why. Educate people about this blog. Scream about Ronan’s story to anyone who will listen.

7) Rules were meant to be broken in life. Break down the doors. Don’t give up if you are told No. I don’t care if it is a hundred times. Nobody ever made history in this world, by playing by the rules. REBELS RULE. Embrace your Inner REBEL. Ronan would love this so freaking much.

8)  Question everything and follow your instincts. Listen to you heart as it is more powerful than your mind.

9) Take a Holiday, once a year and do something completely selfless. How amazing would it be if everyone stopped worrying about themselves, gifts, fancy clothes, on a Holiday and took the time to go to a local Hospital to drop off toys or gift cards to the parents who are struggling/sad/lonely/or depressed because their “Holiday,” now consists of living in a hospital, fighting for their child’s life. Take our self-indulgent Holidays and bring the smile to the face of a child or parent who could use it a thousand more times than you. Take your kids with you and tell them why you are doing this and why it is important.

10) Please stop to enjoy the music in life. By blasting the music you love, the loudest it will possibly go, while having an insane dance party with yourself or your kids. They will love you more for it.

11) Be inspired and inspire other people around you. Find your inspiration. Move mountains with it. Form an army. Join an army. Make something happen.

12) Get off your ass and exercise. It will change your life. It is saving mine. Run for Ronan, because he will never get the chance to run a marathon with me, like I often dreamed of. Swim for Ronan. Bike for Ronan. Walk for Ronan. Ski for Ronan. Do it for yourself and for all the other kids who will never be able to, because they are not among the living anymore. Be HEALTHY. Eat better. Stop freaking smoking. It’s insulting. Not to mention, just plain gross. YOU are better than that, otherwise, you would not continue to read this blog.

13) Get angry. But turn that anger into something positive. Do NOT start dealing with your anger by hitting the bottle, hurting others, or doing drugs. Let your anger fuel your fire, but in a positive way.

14) Pursue your dreams. If they don’t come true, at least you know you tried. Do not be afraid to fail. You should be more afraid of not trying and never knowing.

15) Continue to talk about Ronan, his story, his fight, his beauty, his life, his death…. Help me honor him by continuing to believe in him the way you do. Take my pain, of losing him, and continue on this adventure, with me. I am humbled and so thankful by all of you who continue to want to support and love Ronan. It makes me stronger. It makes me feel as if I can really change the face of Childhood Cancer because of the endless amount of love and support.

16) Love your family and friends. Cut the drama out of your life if anybody brings it to you. Stop apologizing, but apologize when necessary. Be true to yourself, your beliefs, your life.

17) Never settle. EVER.

18) LOVE with your whole heart, soul, mind and body. Make sure the people in your life, are worth it. If they are, give them everything you have.

19) Stop freaking out because your kid colored on the wall, with a black Sharpie, and then peed all over the carpet. Be glad you have a kid to create such a little creative piece of Art for you. Embrace their Inner Spiciness.

20) Teach your Children. Educate them on how lucky they are. Teach them to be kind to others. Don’t lie to them. Let them make mistakes. Guide them, push them, pull them, engage with them. Be present. Life is hard. Let them know this, without having to teach them the way that Liam and Quinn have had to learn.

Alright lovelies. This is my list for tonight. I’ll add more as I think of things. Don’t thank me for it. I had nothing to do with it. Thank Ronan. Kiss your babies. Love yourself for being so beautiful, that you want to be a part of the change.

I love you all. Ronan loves you all. I know he would be proud of this list.

We love our friends at TGen.

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This is going to be an awesome event for a great cause. Join them if you can!

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Oh, and P.S.

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Dear Rude Creepy Stalkers,

I made a decision a couple of months ago to stop posting the insane hate comments that a few people are leaving. Not many, but I do get a few that I usually don’t even read as they go straight to the spam folder. I have already gotten one over this latest post (totally expected that) which I have the power, not to publish. HOLLA! Word to being in control of your own blog! So, to my friend over at Mayadumbass@clueless.com, or really from Minnesota… I will not be publishing your comments where you say marriage is for a man and a woman only (right… because being gay is choice), vaccines gave Ronan cancer, and a few other ridiculous things. Ewwww. Get a life and stop obsessively examining mine with a microscope.

I’ve said this before and I’ll say it again, nobody is forcing you to read this blog. If you don’t like the things I have to say, stop reading this. I am done feeding into the negativity and I am done giving you the attention you so desperately crave because you clearly have some sort of mommy dropped you on your head and daddy didn’t love you issues. Go start your own freaking blog where you talk about your hate for me and gay marriage. I’m not posting that stuff here, ever.

Enjoy your life of hate, unicorns, rainbows(oh… but not rainbows because I am sure they are too gay!), puppy dogs, and where you don’t love Anderson Cooper or Ellen Degeneres. Wow. OMG! Who doesn’t love Ellen? Even though my world sucks you know because my son DIED not from being gay but from a real problem which is childhood cancer, I am very glad I do not live in your world. I freaking LOVE Ellen Degeneres and Ronan did, too!

xoxo

 

Baseball, Brisket and Marriage Equality for all!

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Ronan. I think time is standing still. At least that’s how it feels to me. Maybe it’s because I’m having to take things easy now that your Poppy sister is almost here. Maybe it’s grief. Or a combination of both. I remember things feeling this way right after you passed away for the first 6 months or so. It feels like this once again. I wake up, do the things I need to do, but life feels really empty right now. Nothing feels good. I’m exhausted. I can hardly make it through the day and normal things like keeping up on the laundry, dishes, and feeding your sweet brothers, feels really, really hard. I’m sure this mostly has to do with my pregnancy coming to an end but still, it’s mentally wearing me down. Then there is still the issue with your bedroom. Fucking fuck fuck fuck. I can’t believe it really happened and all of your things are out of there, being cleaned, refinished, your clothes are in bins, your stuffed animals in bags. I still am in shock over it all. I never thought I would let that day happen. Your daddy asked what I wanted to do with the clothes in your closet. I made him leave them there. I still like to touch them and smell them, even though they smell nothing like your sweet little scent. I still take whiffs of them whenever I can, hoping to be reminded of a sweet memory of when they were last worn by you.

I saw Dr. Schwartz today. Everything is progressing well, but I seriously feel like this pregnancy is never going to come to an end. I have it in my head that Poppy is just going to stay inside of me forever as I sometimes still do not think she is real. I honestly don’t think I will fully be able to truly absorb what is happening until I have her in my arms. We talked about everything from Cord Blood Banking, postpartum depression to the whooping-cough vaccine she made your daddy get today. She told us that she doesn’t want anybody around Poppy who has not had the T-dap vaccine as she has been seeing babies die from being exposed. Great. Add that to my list of things to worry about. Liam and Quinn had it with their regular immunizations so they are fine. I had to call your Nana to tell her she needed to get hers before she comes out here. Dr. Schwartz is just being extra careful which is good, but it still makes me nervous. Then there is the whole postpartum depression thing. We sat and had a conversation for a good 20 minutes about this. I told her I honestly wasn’t worried about it. I’ve never had it with my other kids and if I am depressed at all, it’s during this pregnancy -the here and now as being pregnant is keeping me from being able to do everything that helps me not to be depressed/consumed by my grief (which is not depression it’s just grief!) Mainly my exercising. Once your Poppy sister is here, I will be able to start to have my outlets again and they won’t consist of me resting in bed, which I fucking HATE, but instead will consist of going out and doing my hikes/runs/anything to get the adrenaline flowing. She talked about anti depressants. I told her how that’s not happening as I had taken them before and I swear they made me suicidal. How they just seemed to pile on more grief because I wasn’t dealing with anything and I was just numb. I agreed to let your daddy watch out for me though but still, I think I know myself pretty well. We’ll see if I’m eating my words in a few weeks and if so, I’ll deal with it my way. I sent Dr. Jo a text about this later today. We had a very long conversation which left me laughing at the way she got so riled up over the mention of medication/and postpartum depression vs just plain grief. I love her passion so much.We talked about our plan because we do have one. It’s the same one we’ve always followed. When things get more heavy for me, I see Dr. Jo on a more frequent basis and I’m always honest with her about everything I am feeling. We work through it the way it works for me. No fucking meds required. We talked about my sadness though all of this and how I will face it head on. She knows that Poppy is not just going to appear and BAM! all my sadness will be gone. She expects me to feel waves of happiness and waves of sadness with all of this. That’s just the way my life is always now. Poppy won’t fix it all. As Dr. Jo said, “You are not having Poppy to replace Ronan. You are having Poppy because you wanted another baby. But you need to be prepared for the people that are going to come out and act like this she is the answer to all of your sadness. People want her to fix everything and to take this all away from you but that’s not the reality of this. You need to let people know that the birth of this baby girl, does not diminish your pain or your grief. That she does not take Ronan’s place in your family. Ronan’s place is Ronan’s place and he will always be there.” That is our reality. That will always be our reality and nothing will change that. Not even your beautiful baby sister. I know she is going to help with our sadness, Ronan. But our sadness won’t disappear and I am o.k. with that. I am learning every day to just live with it.

Your daddy has been the one working in your room. I can’t bring myself to do a thing. Thank you for him. I honestly don’t know what I would do without that amazing daddy of yours. I always knew I was so lucky to have him, but going through something like this really makes me realize it that much more. He truly is unlike any other man on this planet. He has taken such good care of all of us in every way since losing you. I know it’s a big reason our family seems to be doing o.k. To have such a strong loving man to hold us all up, makes all the difference in the world. I can’t imagine where our family would be without your daddy. Every single night he talks to you out loud before he goes to bed. It mostly breaks my heart to listen to his words and I often times pretend like I am sleeping because what he says, usually makes me cry. Sometimes I don’t want to listen to what he is saying, because him telling you good night and how much he misses you, leaves me with a pit in my stomach that I will never get used to. I always appreciate this though even though it is so hard for me to hear. He went to a concert tonight. He’s been going to a lot of these things lately. I always encourage it. I will always be the wife that says, “Please, go. Have fun.” I will never be the wife that bitches or complains that he does these things. He deserves the break. He deserves to blow off some steam. He works so hard and takes such good care of us that I am always supportive of your daddy going out and having some fun. It makes me happy to see him doing these things. He is so ridiculously excited for your sister to be here. I cannot wait to see what it’s like for him to have a baby girl. I know it is just going to melt my heart. What a lucky little girl to have a daddy like him. It will be such a beautiful thing for our family.

I made your brothers dinner tonight. I cooked a really great brisket for Passover and talked to your brothers all about this holiday and what it means. It’s is important to me that they know about all religions, not just one or none. I want to teach them about EVERYTHING. I want them to have an open mind and be educated about it all. It was a fun little bonding time tonight where we talked about everything from sports to religion to marriage equality for all. Yes. I talk to my twins about this. I am proud to say that I do as I cannot believe this is even an issue in this day and age. Don’t we have bigger fish to fry? Why in the world do I care if my neighbor Bob marries Joe down the street? I don’t. People should be allowed to love who they love, end of story. My boys will grow up knowing this. It’s not our job to judge others or tell others what is right or wrong. It’s not hurting my family, affecting my marriage so GEEZ! Can we please just stop all this madness?! KIDS ARE DYING PEOPLE! Left and right kids are dying from a little thing called cancer yet nobody seems up in arms over this. That to me is pure insanity. People need to get a life and focus on what is really important in the world and it is not over who your neighbor, loves and wants to marry. The ignorance around this is shameful and embarrassing and enough is enough. I have 2 things I am really passionate about in life. 1) Childhood Cancer and 2) Equal rights for all. I won’t ever shut up or shy away from those two things. I was lucky enough in life to have parents who taught me to have an open mind at such an early age and who welcomed a very gay, black man into our world who we loved like our family and whom I was taught was no different from us. I will forever be grateful for my parents for this lesson in life. I will forever be grateful for my parents who let a little girl love a man for who he was, not who society defined him as being. I am a better person for this and my twins will be, too. I would have given ANYTHING for Ronan to grow up and be gay. Or straight. Who cares. At least he would have freaking had the chance to grow up and not die from cancer! Seriously. Where are our priorities?

Alright little man. I’m going to get off my soap box for tonight. I miss you. I love you. I hope you are safe. Please keep your Poppy sister safe. It won’t be much longer now. I love you.

xoxo

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I was never going to be ready for today.

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

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

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

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

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

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

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

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

xoxo

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

 

Your Happy Birthday Sparkly smile. I love you.

Your Happy Birthday Sparkly smile. I love you.

A SPLENDID Event!

 

 

 

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How SPLENDID is this! Get this event on your calendars for 4/11/13! A discount at one of our most favorite retailers AND they are committing a minimum donation of $1000. 3 cheers for SPLENDID!

The day we pretended like you were alive

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Ronan. Today, I got a phone call from your brothers’ school in the middle of the day. A phone call like that is never good. I picked up and listened as the school nurse informed me that Liam got hurt at recess and I needed to come and pick him up because he needed stitches. She was a little panicky which led me to hauling ass to the school as quickly as possible. Once I was there, I checked out the damage done and it didn’t seem too bad. She cleaned out his elbow and he actually did have a pretty deep football war wound. She told me she was pretty sure he was going to need stitches. I put Liam in the car and calmed him down. He was pretty freaked out about the stitches part, but was trying to act so brave as he hid his tears. I told him stitches may not be necessary and told him if they were, the doctors have some great numbing medicine that they would put on it so he wouldn’t feel a thing. I called our doctor’s office and I was informed that they wouldn’t do stitches on the elbow, so we should head down to PCH. Down to PCH we went for our little adventure of the day.

We got a room pretty quickly and the nurse in charge came in to check out Liam’s elbow. He started asking all sorts of questions like how did this happen, are you in pain, etc… All the basic questions that are necessary. I stayed out of the question answering part of this as I am aware that your brothers are big enough to speak for themselves but being the mother hen that I am, I always want to swoop in and answer for them anyway. I let Liam do the talking. After all the formal questions were out-of-the-way, next came the fun ones. “How old are you? What grade are you in? What’s your favorite football team?” Liam answered them all without skipping a beat. The next question came. “Do you have any sisters or brothers?” Oh god, I thought to myself. How is he going to answer this? “Yes. I have 2 brothers and a baby sister on the way.” I let out a sigh of relief. The next question came. “How old are your brothers?” Liam answered, “My twin brother is 9 like me and my little brother is 4.” I looked up at Liam as I wasn’t expecting him to answer like that. So nonchalantly, as if this were absolutely true and we were just another normal family where you didn’t die from cancer. “Wow! 3 big brothers! Your little sister is one lucky girl!” said the nurse with a big grin on his face. Liam then goes, “I know, ” as he shot me a big grin from across the room. I had been watching his face this entire time and gave him a big smile and a wink. He winked right back at me. Winking was something you used to do to me all the time. I remember how you mastered it while we were in New York and you were so proud to show it off whenever you could. This winking moment with Liam totally made my day. It reminded me so much of you. You were the best little winker. I swear we have been smiling ever since. I don’t know if this is right or wrong. All I know is it felt like a really beautiful moment that I wasn’t going to let pass me by. Today, I did not feel like swooping in and explaining our real truth while my voice quivered and tears ran down my cheeks. Today, I felt like smiling right back at your sweet brother and going along with our perfect little happy family story that at one time, was really ours.

Liam ended up not needing stitches. They were able to clean it out, gauze it up, and bandaged it up really well. It looks like a really good war wound. He was most concerned that he was going to have to sit out at his first baseball game that night. I told him we would see how he was feeling, but it might be a good idea to rest his arm. That’s what ended up happening. Your brothers had their first baseball game last night. I went and sat and watched. Our dear Kassie came with me. Your brothers were so excited that she was coming to watch. It was a great game and they ended up winning. I always find myself missing you during these times so much. I know your brothers do, too.

I had a Poppy check up yesterday. Everything looks good with her or according to Dr. Schwartz, “She looks perfect!” I said I knew, that all of my kids always looked perfect. It’s the after part does my new baby have cancer I’m worried about. We talked a bit about newborn screening. We talked a bit about the date which I would prefer for Poppy to make her entrance into the world. She knows how nervous I am and has been so good with me about doing whatever it is I need done to calm me down. She asked me if I would ever do this again… the have another baby part. I told her I didn’t think so, that mentally it has been really hard for me. Let’s just get Poppy here safe and sound. I can hardly wrap my brain around any of this, let alone thinking about another baby. Yikes. That seems like a lot. Dr. Schwartz told me she is measuring a week ahead of schedule in her height, but not in her weight which is a good thing. I’m sure she is going to be so tall and have those long legs of your daddy’s. We are slowly getting things ready around here. All of this still doesn’t really feel real to me. I know it’s going to take her actually having her here, for me to fully grasp all of this.

Alright little man. I need to run. I miss you. I love you. I hope you are safe.

xoxo

Promises made, promises broken

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Ronan. Yesterday was St. Patrick’s Day. One of my favorite holidays. We didn’t do much. Your brothers had baseball and basketball practice and we kind of just went along like it was just another day. Holidays are still weird for us and celebrating feels funny to me. I make sure to always stay off of things like Facebook during many of the holidays. Seeing everyone normal and happy still stings for me. Not that I would want it any other way for others, but it just makes me sad that things are not this way for us anymore. We all wore green. We went out and had a family dinner where we laughed a lot at the things your silly brothers said. There were some heavy talks too, mostly in the car ride to where we were going.

It was Quinn who was inquiring about things, like always. I know Liam wonders these things, too but I think he keeps his questions more to himself. We started talking about Poppy  a bit about what will happen when she is born. Quinn’s next question was, “Didn’t Dr. Jo’s baby die when she had her? Can’t that happen to Poppy?” Questions like this always make my stomach drop and my heart sad. Your big brothers should not have to know things like this at 9 years old. Your big brothers should not have to worry about things like this at 9 years old. I know that they do due to everything we went through and the world we live in now which is a world full of other kids with cancer and often times babies and kids die. As much as I try to shelter them from this world, it will forever be a part of them and shape them into the boys they are becoming. As far as I can tell, it hasn’t harmed them at all. They only seem to be becoming wiser, sweeter, and more compassionate human beings. If that were even possible as I swear to you they have been this way since the day they were born. I explained to Quinn what happened to Dr. Jo happened a long time ago. I did not tell him it still happens all the time in this day in age. Your daddy went on and on about Dr. Schwartz and how amazing she is and how she won’t let anything happen to me or Poppy. My mind quickly went to, I remember when we had a similar conversation with Quinn at 7 years old. “Is Ronan going to die?” he asked with his big beautiful eyes. “No way, Quinn. We have the best doctors taking care of Ronan. We are not going to let anything happen to him. We promise you, buddy.” Promises that we couldn’t keep, promises that were broken, but promises we fully believed in at the time. Your daddy really did swoop in and save the day by turning the conversation into fully being about what a great doctor  Dr. Schwartz is and what it is, that makes her such a great doctor. Both of your brothers seemed intrigued listening to what your daddy had to say. I exhaled a little and let myself get lost in his story, too.

I also got to see Teddy’s mom on Sunday. She flew into Phoenix to see Dr. Jo. She came over and we went out and had a very somber yet sweet lunch. Our entire conversation revolved around you and Teddy. About the choices we made with your treatments, about how we are still in utter shock and disbelief that our sweet boys, fucking died. Clarence was making the drive up to Sedona for a few days to have some time with Dr. Jo. I am so glad for that. I’ve been nudging her to come and see Dr. Jo for a while. She texted me today to tell me thank you because Dr. Jo is absolutely amazing. I just responded with, “I know. She’s unlike anyone on this earth.” I am so glad Clarence is here and taking some time for herself to talk about all of this. I am so glad Dr. Jo is the one helping her. After Clarence left Quinn came up to me. This next part makes me want to cry. I sometimes cannot believe I am having a conversation with a 9-year-old. “Mom. Is Teddy’s mom alright?”

I just looked at him and gave him a little smile and said, “I think so, baby. I think she is just a little sad.” He goes, “Teddy just died, right? I hope she is alright. Teddy always seemed so happy whenever I was around him.” (mind you Quinn met Teddy once but all he remembers is how happy Teddy was.) I told him that she will probably always be a little sad, the way we all are when we are missing you. How we will never stop missing you, but that doesn’t mean we can’t be happy, too. He looked at me and goes, “Are you o.k., mom?” Somehow I kept myself together and wrapped my arms around him and told him that I was o.k.  and thanked him for asking. Liam was sitting in this room listening to this conversation as well. I know he hears everything but he seems to let Quinn do most of the asking the questions. It’s like they have this secret pact. Liam wonders, Quinn asks, then they both know. It really is very sweet and special the little twin bond thing they have going on. I don’t know what they would do without one another.

Today your Aunties, Stacy and Fernanda came over with mission Poppy on their minds. They made me show them everything I have for your sister. We went over everything I don’t have, but need. We sat in your room for a long time. I sat on your bed, Stacy sat on the opposite bed, and Fernanda was sprawled out on your floor. I pushed back my tears a lot as we talked about you, your sister, your bedroom and I listened to Fernanda as she told me how far along I have come. She told me she knows it’s hard for me to see because I am the one walking this walk, but to them on the outside looking in, I have come such a long way. I can agree with her in a way but I also know that I don’t really have any other options. I won’t give up on you, therefore, I won’t give up on myself or this life that I am here trying to live the best I can. I know I could have chosen to self destruct. I know I could have ruined our entire family because I was so blinded by my endless amount of pain but that little voice in my head always went back to if you do x, y, and z, you will let Ronan down and you cannot let Ronan down. I always think about all the lessons you taught me in your short little life and I refuse to just throw them all away. I am here to use those lessons and do as much as I can with them. I will not waste your little gifts on my sadness that often weighs me down but somehow I always seem to find a way, to push it off of me and continue on. You were such a little fighter, how could I possibly not be as well? I promise I will always fight for you, my sweet boy.

Alright baby doll. This is all I can write tonight. Please continue to keep Poppy safe. We are all so excited to meet her. I miss you. I  love you. I hope you are safe.

xoxo

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A Phoebe Update

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

The pink lint in the dryer made me cry

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Ronan. A few weeks ago I said to your daddy, “I think I can be o.k. if we put Poppy’s crib in Ronan’s room.” He looked at me startled, and told me hearing those words out of my mouth gave him a lot of anxiety. I said those words a few weeks ago and nothing had been done, until today. My thinking behind this really came down to two things. 1) If you were still here, you would be sharing a room with Poppy anyway and 2) I am so tired and sad of walking past your empty room, day after day and night after night. Your room is big enough that there is enough space to leave your side pretty much the same, we will just change the other side where the extra bed is. We are leaving your bed and will put Poppy’s crib on the other side of the room. There are things we will do to your room, to make it Poppy friendly, too. Originally we had planned to add on another room, but that is not a project I could mentally take on at this point. Living in a construction zone with a new baby was not anything I felt up for and I’m still dealing with the whole I don’t want to do too much, until Poppy is actually here. Poppy is almost here. I have about 3 weeks to go and it’s kind of down to crunch time. I tackled some parts of your room today. All I have to say is fucking fuck fuck fuck. I hated today.

I worked doing what I could do. Cleaning out toys you never played with, clothes you never wore, books you never read, I worked fast and hard sobbing with everything I touched. Your daddy helped and kept telling me that enough was enough for today. I told him no it was not, I still had a lot to do. Liam found me carrying some books out of your room, and sobbing so hard that I was shaking. He wrapped his arms around me but I couldn’t even uncover my face with my hands to fully embrace him. He ran off and got your daddy to tell him I was crying. At this point, I was back in your closest running my hands over your little worn out Uggs that you wore everywhere and pretty much destroyed in New York because you lived in them. I watched as your daddy tried to play the strong role, but he really looked like a deer in headlights as he stared at me with a look of disbelief in his eyes that I have not seen in a long time. I saw his heart break again today, right along with mine. Over and over again our hearts that sometimes seem to be alright, get shattered once again. The pain on your daddy’s face only made everything worse. I hate so much that he hurts just as much as I do. Your daddy never deserved this kind of pain. None of us did. None of us do. Nobody does.

I started to wash the clothes I have for Poppy. I sobbed with every sock of hers that I folded and every blanket that I washed. I hung up some of her things with your things in your closet. I live in a world of sadness and happiness. A world where your little hats and sweaters now collided with Poppy pink headbands and socks. I took out the dryer lint after drying some of Poppy’s things today. It was pink. WTF is going on? Never in my life have I had pink dryer lint because I lived in a world where having 3 boys is all I’ve ever known. How can this be? How can you not be here, really sharing a room with her? I picture it all the time. How much you would have loved having her in your room. I imagined you doing things like sneaking over to her in the middle of the night, to check on her or to try to wake her up because you would have loved her so much that you would have wanted to play with her 24 hours a day. I think of this and it only makes me sad. The only thing that helps with this is knowing that you have 2 older brothers here that will love her extra hard for you. I know your brothers are happy Poppy is going into your room. It will be nice for us all to have some life back in there again. Since your daddy won’t let me pack everything up to move out of the country, or even out of this house, I will make the best of this situation and compromise for everyone. Your daddy still can’t imagine leaving our house which is so full of the memories of you. I still struggle with being here because it only makes me miss you that much more.

I dropped your daddy and brothers off at a St. Paddy’s day party tonight. I didn’t feel like going. I still have a hard time functioning in the normal world and still have not learned how to put on a plastic fake smile where I pretend that everything is alright. I don’t go out very often anymore and I am honestly o.k. with that. Maybe someday things like big groups of people will be o.k. but for now, it still is not. To me it still feels like a world that is foreign to me and I am not ready to learn a new language quite yet. I still prefer my dark, underground world that I have made up in my head because I live in a place where sunshine and sweet singing birds surround me 24/7. I wanted to shoot those birds and blow up the sunshine today. Can’t somebody turn down this brightness just a bit? It is too much to ask for the weather to just cooporate with my mood on a daily basis? It is when you live in AZ. A world where I swear you can overdose on all the sunshine and happiness. Well, at least if you are a bereaved parent you can. I’m know the normals of the world, love it. I think I used to be one of them. I’m not anymore. Nor will I ever be again.

Alright my little spicy monkey. I’m sad, mad, angry and tired. I had a hard day. I am going to finish up a few more things in your room. I will forever be sorry it is this way. I love you. G’nite Ro baby.

xoxo

  • Instagram is my BFF

    Lorde with my little royal. @quinnthompson24 #ronan #fucancer #lorde #imthecoolestmomever #hessocute Miss you already, lover. #poppy #ronan #fucancer #rideordie #mommynumbertwo @macymwood Dedicated to my @macymwood. Ride or die for life. #ronan #fucancer #iwillloveyoutilltheendoftime #lanadelrey #iwouldmakeoutwithlana Hipsters. #ronan #fucancer #middleagedhipsters #youngforever #forgotourflowerheadbands #lanadelrae Been trying hard not to get into trouble... #ronan #fucancer #lanadelrae #mymusicalsoulmate @macymwood This is my happy place. #poppy #ronan #fucancer #hidingfromtheworld #sundaysnuggles @macymwood @knjoy Sundays are for sleep. @macymwood @knjoy #poppy #ronan #fucancer #sleepingbeauty #wornoutfromsomuchdancing Just making out with my favorite homegirl. #poppy #ronan #youdownwithopp? #yeahyouknowme #homegirllove #fucancer Poppy's other mom is in da house! #poppy #ronan #fucancer #mytwomoms #thesebitchesarecrazy @macymwood A bunch of little ballers and a P-Ro, too. #poppy #ronan #fucancer #basketballislife #arcadiatitans This has secretly been being worked on for quite some time. As you can imagine, it was a very emotional thing. We as board members/friends at RTF decided it was time for the little seal logo to go. We needed something that really spoke to who Ronan was/is. This is what our amazing friends at Fervor Creative came up with after many meetings with us and many do overs. (pro bono might I add because they have such beautiful hearts) I think they nailed it this time as it shows the beauty, strength and bravery that Ronan had, in such a simple way. How no matter what, you always keep walking up that hill and fighting, and even in death, you wont stop fighting for a world that so badly needs to be fixed which is the world of childhood cancer. Looking at this makes me proud, it makes me cry, it makes me strong. After everything Ronan went through, he always held his little chin up with such dignity and pride. At 3 years old, he was such a little man who never felt sorry for himself or let what he was going through get him down. He was my greatest teacher in life and will continue to be as I carry him with me in everything I do. I love you, Ronan. I will never stop fighting for you and this fucked up world of childhood cancer that everybody just seems to ignore. We will change this, because of you. I hope you all like our new Ronan Thompson Foundation design. @ronanfoundation #ronan My favorite place to be on a Friday night. #poppy #ronan #fucancer #fridaynightsnuggles #mybabe
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