Dear Empire State Building, Part 3

Ronan, before he was diagnosed.
Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

“Hey guys, do you want me to move back in with you?”

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Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that.  About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.

It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things  you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.

We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.

On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.

“Hey, do you guys want me to move back in with you?! That would be so fun!”

They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.

“I really would. You guys are really awesome roommates.”

I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.

Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.

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

xoxo

26 months without you

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Ronan. Today being 26 months without you, made me want to hide in my bed all day long. Your baby sister woke me up this morning at exactly 3:23 a.m., just minutes before you died, to eat. How does she already know everything at just 12 weeks old? How did she know at that moment, I needed a reminder that even though you are gone, you are still with us at all times? She is already so wise beyond her years.

I wanted to hide in bed all day and do nothing but sleep, sleep, sleep. I didn’t. I played with your brothers, instead. I went for a hike with your Papa Jim, your brothers, Poppy and Jady girl. I decorated some trees with your bracelets like I always do when I am hiking or out and about at places I know you would love to be with us.

I’m sorry I haven’t been writing to you on this blog. It makes me so sad that I have so much going on, that it seems to take away time from my quiet time, writing to you. Days are filled with me making sure your brothers are enjoying their summer as much as possible and bonding with your Poppy sister by making her smile and laugh as much as I can. The quiet time I have to myself which is really late at night after everyone is asleep has been spent working on this book. I have been having a war inside my head with myself about it. I swear I am my own worst enemy. I’m constantly doing the second guessing, the what if it’s not good enough, what if I don’t make him proud. A wise little editors words haunt my  head… “Remember, besides having kids, this is going to be the most permanent thing you do in life.” No pressure at all. The hardest part has been figuring out where to start, but I did it. It’s kind of like jumping off of a cliff. Sometimes you just have to close your eyes, follow your heart and take a huge leap of faith. I seem to be finding my words easily and so far, I have not had to go back to reference my blog at all. I’m sure there will come a point when I have to do that, but for now I seem to be doing just fine without having to reread my painful words. I know the inspiration I am finding all comes from you, so thank you once again, little man.

I’m going to keep this short and sweet tonight as I need to get some writing done for a few hours before my eyes fall too heavy to see the computer screen. I hate 26 months without you. I’m so sorry. I miss you so much that it makes me sick. I am doing my best even though I still have days where I just want to close my eyes and go to sleep for a very long time. I can’t do that to you though. We have too many things to get done here.

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

xoxo

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Instagram is where it’s at

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I know you all worry when I go radio silent for a while. The best way to keep up with me when I’m not writing on this blog is via Instagram. I’m pretty much obsessed and think it is the best social media invention ever. Poppy and I just posted our first video. No carrots for Poppy. Sorry, Pops.

So, follow me if you want to keep up with me and this insane life I live without my Robaby, while trying everyday to make sure he is a part of everything I do.

Love you, Ronan. Miss you so much.

 

http://instagram.com/mamamaya

“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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I 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.

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

A Phoebe Update

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

“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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I love you

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I watched this video a lot yesterday. It only added to my breakdown. I miss your squeaky little voice, so much. I love you, Ronan. I’m so sorry.

http://www.youtube.com/watch?v=T3HsDsrBwb8&list=UUDEakKuXcCmFO8KnT4FdmBQ&index=17