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.

Baby Danger Plan….. Activate!

Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.

After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.

I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.

I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.

I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.

Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.

I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.

The start of many firsts without you. A.K.A. Fucking firsts. Thanks, S:)

Ronan. I’m tired tonight. I have not been sleeping well and I know it is because I am missing you so much. I don’t really know what it feels like to be depressed, but I think that’s what I’m feeling lately. I’m still going out, doing things, but my heart is so heavy that I sometimes feel like it is just gone. I don’t even feel like my heart lives inside of me anymore. It’s too heavy to carry around and I feel like when you left, you took my heart with you. I’m so sad. My tears are endless. My hurt is unbearable. I miss you every second of the day. Life is so strange without you here. We all feel it and we don’t know what to do with it.

Today, I took your little surfing brothers to camp. They both did really well but it was a cold day for them out there. I let them pack up a little early as they were excited to play with Laura and Kasey who came to see us today with Cameron and Chase. They arrived just in time to watch your brothers catch some waves. We spent the entire day and night with them. It is always so comforting to me to be with them as you know how much they mean to our family. It was a little hard today though too. Mainly because of all the time we spent with them with you. You and Cameron are so close and age and when the two of you were together, I used to dream of you growing up, being best friends, maybe dating :), but being together forever. Childhood friends for the rest of your life the way I grew up with Laura and pretty much Kasey too. I met Laura in the 8th grade. We became best friends. She met Kasey when she was 15 and they started dating. My two favorite high school sweethearts and our families blend so well together. Watching your daddy and Kasey together…. well, to me there is almost nothing better. Being with Laura, with all of you crazy kids, running about has always been one of my favorite things  about life.  To know that now that will never happen again with you, makes me so sad.

Tonight, Laura and I were sitting by the pool watching Cameron and Quinn play. Two summers ago, that was you…. “Baby Danger,” jumping off of the edge of the pool, scaring Laura to death all while I sat back and watched you and laughed. To sit tonight and watch Quinn swim quietly with Cameron, was so hard. I sat and cried and Laura just rubbed my back. I told her I just miss you and she asked if the days ever get easier. I told her no. So far, they have not. I told Mr. Sparky Eyes tonight that I don’t think time heals all wounds, if anything they just become deeper. I will be scarred for life after losing you. But I’ve got to figure out how to wear these scars with pride and dignity because that’s how you would have wanted it. I’m trying not to push myself too much as I need to let the dust settle because you left me such a short time ago. I want you back so badly, that I would trade having just one more day with you, for my life. Ronan. I miss you so much. I don’t know what else to write tonight as I am just too sad. I got a very sweet “Dear Ronan,” letter from Melissa that I am going to share with you. It is beautiful, just like she is. Thanks, M. You are so true and genuine which is why I love you so.

Dear Ronan,
I keep thinking back to Saturday, May 7th, two days before you died.  You were lying in bed, your legs were emaciated and your mamma kept rubbing them.  Ro, you were in so much pain. I thought your mamma’s hands would fall off, she never stopped rubbing your legs and little upper thighs. I laid for so long on that bed with your mamma and rubbed her back because I wanted to help her so much.  I offered to take over and rub your legs but you would only allow her to help you. She never stopped.  Your mamma went so long without eating or sleeping that last week you were alive that it was amazing she could function.  I kept buying her coconut water.  I think that was the extent of her nutrition.
I am 42,000 feet high in the sky tonight heading to Rhode Island.  
I am flying on ” A Big Jet Plane ”  Ronan, and I feel a little sad.  I am thinking about the amazing summer Dante and Alessia will experience and how you won’t live a life.  You had such a short time on earth. You were robbed of time.  As my Dante says, ” Ronan was dealt a shitty deck of cards, ” a little inappropriate for an eight year old to say but it is the truth. Your parents raced against the clock.  Time always wins Ronan, time is so unfair. Time has no respect for age, love, or hope. 
I do believe every one of us is on earth for a purpose.  I do believe your purpose is to be the beautiful poster child for awareness and funding for neuroblastoma. A horrific purpose for a family.
Do you want to talk about ignorance?  When your mamma told me you were diagnosed I had to go home and goggle it.  I placed a P where the B is located in that awful word. In August your mamma told me you had cancer, a perfect stranger at that time, and I decided I would be friends with Maya Thompson. Why not?
I brought her a coffee one day and realized immediately that I got so much more out of the visit then I ever thought possible and loved her personality and determination.  Remember how you would throw me out of your hospital room at times when I would visit?  You were so feisty!  I hated leaving your mamma but she did not mind because you were happy.
I was having horrific nightmares after you died.  It all started the day your mamma showed me your ashes while in your home one afternoon.  I told her they scared me and could not believe they were in the kitchen.  The worst nightmare was about your mamma and I in Frys Supermarket.  She was running around screaming, “where is Ronan ?” We looked and looked but we could not find you anywhere and there was a clock on the wall showing us we were out of time to find you.  I then ran all the way to the ocean and when I got to the shore I found a body floating dead in the water and it was Alessia.  I would then awake and my heart would be racing and pounding. 
The dream must have derived from your mamma’s horrific and tear jerking blog, “Where’s Ronan ?”  I read that blog too many times.  I couldn’t help it because I could not believe I watched you drink a coke on Saturday and demand those Star Wars guys be placed in good and bad categories on your bed, then visited Sunday night and then you were gone forever…………
Well, I no longer have that nightmare thank goodness.  I think it is because I finally realized where you are, right in your mammas heart and soul. 
I’m sorry the prayers did not work, I am sorry that time won and I am sorry that your parents had to go through hell to make others realize all the good in their lives.  So many people are better for knowing your sad story.
I am so lucky that Dante, Alessia, Liam and Quinn all go to school together.  We are all going to be friends forever.  We were at your house the day they left for California. I was so happy to see the boys excitement about the trip. I promised your mom she would never be “one of those moms.”   You know, the useless ones that talk a lot but never make a difference.  Mamma and I are going to keep drinking our extra hot vanilla lattes and do a whole bunch of good work.  Your mom has a team.  I have never seen one person have so many amazing friends.  I have always thought it was a blessing to have a few close friends…but not your mom…she has multiple teams of friends.  Maya Thompson reminds me of a tornado, a good one. 
I can’t wait to see what she does once she is a feeling a little bit better.
By the way, my phone still twerps like a bird.  I loved how it would make you giggle.  Your adorable giggle will remain in my heart forever.  
Thank you Ronan.  Thank you for all your life lessons and making me a better person. 
Love,
Melissa 
I’m going to end this post tonight now. I am going to try to get to sleep at a decent hour as I can feel my body shutting down due to the lack of sleep and overdoing things. Ronan. I love you to the moon and back baby. I hope you are safe. Please don’t go too far away from me. I still worry about you so much. G’nite my sweet boy.