Turkey, Tears and a little Apple Pie, too

Ronan. Yesterday was one of those beautifully bittersweet days that will forever be. We spent the day at home, together enjoying each other and just taking it easy. I cooked an apple pie while Macy made her pumpkin. Fernanda came by with a turkey that she had made for us. She brought her 5 kiddos, too. I got to get in some hugs and kisses from her sweet baby girls who are 4. I think about that a lot. How they are just a little older than you, before you left this world. I like to sit back and watch them and imagine what you would have been like if you had ever had the chance to be their age. If you would have been here, you would have been running around with your brothers and Fernanda’s boys, shooting toy guns and playing some hide and seek game with them. You would have been in the middle of everything. Fernanda and her gang soon left just as our other friends started to arrive.

Mandy came with her family. Melissa came with hers. Uncle Jay stopped by, too. Soon our house was filled with the warmness and happiness that it sometimes lacks. The girls got all the food ready while the guys watched the football game that was on T.V. The kids all played outside, throwing the football and playing hide and go seek. Melissa’s daughter hung out with us and we did girly things like paint her nails. With sparkles of course. We all sat down for dinner, in the most informal way. Just the way we like it. The kids at one table and all the adults kind of scattered about. All of the girls, sat around our dining room table. The guys went back and forth between us and the football game they were immersed in. It was a nice, low-key dinner. Your absence was so very present though. There is never a time where we aren’t thinking about your or missing you. That goes without saying, always. At one point during dinner, Melissa quietly said a little something about you. That is one of the reasons I appreciate her so much. It’s the little things, such as her simply saying for as thankful as she was to be with all of us, in our home for Thanksgiving, that the reason we were all together was so sad. It is due to your absence that we were in the company we were in. It is so true. It’s because of you, that we are surrounded by our dear friends, some whom we wouldn’t have known if it wouldn’t have been for going through something as awful as this. I started to cry at the table, Macy next and everyone else soon followed. Tears and turkey it was. Tears and turkey it will always be. After dinner, we let the kids beat the shit out of a piñata that has become a tradition of ours during Macegiving. They had such fun doing it but once again, even during all the giggles and excitement, I couldn’t help but think of how unfair that you were not there, to join in on the fun. You would have loved our untraditional holiday, so very much. Pinata’s, mexican food, mullets, mustaches, fireworks and a bit of turkey, too. That’s how we roll on Macegiving. It was a night full of love, laugher, and sadness. Another holiday down. I was just glad to have gotten through it and I was even more glad when it was over. Holidays will never be the same for me again. They just don’t have much meaning for me anymore. They have become something that I feel our world puts so much silly importance on, while the real meaning gets lost in translation. Why do we sit around one day a year and take that one day to try to be thankful for all that we have? Shouldn’t it be like this every single day that we are alive and healthy? I swear I heard more about Black Friday then the actual being thankful for Thanksgiving. That makes me want to vomit. It’s the real world petty bullshit that I have such a hard time with. All week I felt like covering my eyes and ears to all that was going on around me. I don’t want to hear about all the amazing black friday sales. I don’t want to hear about the fightings and shooting over all the sale item stuff. Because at the end of the day, that’s all it is, is stuff. And as we all know, stuff isn’t what matters most in life. But fuck, do people sure act like jackasses about it. Clearly, these people have never watched a kid die from cancer, right? And if so, then I don’t really even have words for that. Don’t get me wrong, I like a good bargain in life. But when it comes the day after I was supposed to sit around and be thankful for all that I ALREADY have, well that to me just seems a little ironic. And stupid. And I want nothing to do with it.

The day after Thanksgiving we didn’t do anything. I was wiped out, Macy was wiped out, everybody seemed to have an emotional hangover. We stayed at home. Cuddled. Watched some movies. Took naps. Ate. I felt like I was in a coma. I forget how the emotionally exhausting these holidays are for me until they hit me the next day. Holidays are exhausting regardless. Add a dead child to that and times it by 1000. It is almost unbearable at times. I knew that I could take one day to gather my strength back up but once Saturday came, I was going to have to face the day. I was glad when Saturday arrived as I had a plan of action. I do much better in the world when I’ve got a plan in place. Without one, I feel like I am just floating around, trying to make it through the day without wanting to slit my wrists. A plan for me, keeps me focused and in line. It’s almost my lifeline in a way.

Macy and I ran around getting some things for your Candy Cart, Ro. We had made a plan with Phoenix Children’s Hospital to do your candy cart on Saturday. In my mind, I was thinking about all of those kids, stuck in the hospital who didn’t get to go home for the holiday. In my mind, I knew of a way that I could bring some smiles to their faces in a really easy way. In my mind, I was also selfishly thinking of me and how I knew doing something like this, for others helps me to get through rough things like Thanksgiving. I also knew your Macy would be honored to be a part of it. I was so excited when Saturday came around it was all you and these kids. We decked out your cart with candy and toys. Thanks to the awesome company, Spirit Hoods, we also had some really great animal inspired hoodies to give out as well. Remember how we used to wear ours in the hospital all the time? How soft they are and how warm they kept your little bald head? They contacted me a while ago and asked if they could send me a bunch. I was of course, over the moon about that. Their hoods make such perfect sense to give to all of these bald-headed babes. Stacy, Mandy Bee and Macy all helped me with the cart at PCH. You should have seen the smiles that I got to see today. You should have seen the way the kids’ faces lit up over the goodies that we brought. You should have seen the way that I felt a little bit happy, being able to do something so wonderful in honor of you. You might think after going through all of this, that I would never want to walk on an oncology floor again? Not true. It is the only place I feel sane in. It is the only place I feel like I belong. Not only did I get to make the kids smile today, but I got to make some parents smile as well. That to me, means just as much. We ended your candy cart day by walking to the elevators and I hadn’t really seen any of us cry yet. I looked over at your Macy and saw her wiping away her tears. That gets me every time. Once she starts, I start and then there is no stopping it. She said something ridiculous like, “I’m sorry. I have a crying problem.” I laughed and thought to myself…”A crying problem? I don’t think so. More like the biggest most genuine heart I’ve ever seen anybody in my life, have.” I don’t know what I would do without that girl, Ronan. I thank my lucky stars every single day that she came into our lives when she did. I thank my lucky stars every single day that I watched the two of you, fall head over heels in love with each other. I thank my lucky stars that she is still here and is still one of my very best friends. Thank you, Ronan for our New York Miss Macy. She is my sunshine during these very dark days.

I’m tired. It’s late. I miss you, so very much. I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.

xoxo

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Oh, Hey Cancer! Fuck you! Seems like an appropriate title tonight.

Ronan. Your daddy left for Vegas. This means I get to hold down the fort while he is away. Normally this wouldn’t be a problem in the pre Ronan is not dead days. Now, doing things like keeping your brothers entertained on their fall break, solo, is hard fucking work. Don’t get me wrong, they are easy boys. And if you were here, I have no doubt we would be off doing things like going to the Pumpkin Patch, shopping for Halloween costumes, and having lots of adventures. You know what is right around the corner. Your most favorite holiday. Halloween. It used to be my favorite holiday, too. Now it just makes me extremely sad. Last year, I dressed up like a dead zombie because that is how I felt. This year, I’m not feeling like doing anything except burying myself in a big hole in our backyard. I have not carved pumpkins with your brothers yet, or gotten their Halloween costumes. We have been talking about what they want to be. Of course I always wonder what you would have been. In my mind, you would have been a different Star Wars character every year for the rest of your life. I don’t think you would have grown out of your Star Wars phase just quite yet.

Today, Liam and Quinn’s fall break consisted of therapy. It was Liam’s day to be with Dr. Rachel. It’s been a while since he has seen her. I went in and talked to her before hand. I told her that I have been having to talk about your last days a lot, with everything that I have been doing. I told her I was worried because we had not really talked about it in depth with your brothers. We agreed that she would dig deep today, without pushing Liam too much. I waited in the waiting room with Quinn. My mind was racing and of course my heart was breaking thinking of the conversation that was taking place in the next room. What a great way to spend fall break, huh. Liam came out after an hour, his little eyes all red. I got up and left him out in the waiting room with Quinn while I went to talk to Dr. Rachel about how the session went. I listened to her tell me how Liam talked very openly about the sadness he feels over losing you. How during the time when you were dying he told himself to be a good brother, to be brave, to be strong, and how he wanted to be somewhere else. He told Dr. Rachel he told you the same things. He cried a lot when talking about all of those things. She told me he has a higher emotional intelligence than most kids his age. How well he was able to verbalize everything that he was feeling. I wiped away my tears while listening to this. I felt like punching the wall and screaming, “WHY THE FUCK DID THIS HAVE TO HAPPEN?!! TO THE BEST BIG BROTHERS IN THE WORLD?!!!” I got up and told Dr. Rachel thank you. We decided that it was best for now to let Liam talk about these things in his safe space with Dr. Rachel. I asked Liam in the car if he wanted to talk about anything. He told me he did not, so I left it at that. I am just thankful that he is opening up to someone.

I picked up a friend of your brothers so we could have a play date. I took them over to The Village to play basketball, football and swim. I was sitting outside, under the shade of course with my dark sunglasses on because I have developed an allergy to the sun called, “I fucking hate you.” I was watching your brothers and their friend swim. I was trying not to get too sad that there were 3 boys in the pool and one of them wasn’t you. Just as I was sitting there, a little hummingbird came flying right up to my face. It stayed there for a few seconds. I smiled. I thought of you of course because little hummingbirds don’t happen often in my life, but when they do it is always when something really important or sad has happened and I need a little sign that you are around. 3 minutes later, my Twitter alert went off. Somebody had tweeted me that our friend, Super Ty had passed away. My stomach dropped to the floor. I sat there for a few minutes. I didn’t cry right away. I thought about the hummingbird and how that was your way of telling me you were going to take care of Ty now. Hot tears rolled down my cheeks as I watched your brothers laugh, splash and play. I sent your Sparkly a text about Ty because he knows how he was our roommate at Sloan. I told him that he had passed away and how cruel life was. I told him about the hummingbird too and how I knew it was a sign from you and how you would now watch over Ty forever. He told me that he knew that you would, too. My tears didn’t stop for a few minutes. I’m so sorry to Ty’s mama, daddy, little brother and to all who knew and loved him. I’m so sorry to Ty. Will this cruel world ever get better, Ronan? How many kids is it going to take, before people start paying attention to the point where everyone finally says, enough is enough? When is this sick cycle of kids dying over and over and over from cancer going to end? When are people going to stop looking away because it can’t happen to their child, right? I know I am making a lot of headway with everything we are doing, but some days I feel like how long is this going to fucking take? And what is it going to take for everyone to wake up and join in this fight with me? Am I going to have to organize a freaking protest or something? When will our government really step up to the plate and what can I do to make this happen? Somebody get me on the phone with Obama. Seriously. Too many parents are losing kids. Too many kids that are still here, will suffer for the rest of their lives. They deserve to stop being overlooked. They deserve better treatments and options. I don’t want another mom to have to sit down with their other children and let them look at the ashes of their dead brothers body. I am beyond heartbroken and if things continue to stay this way, I just don’t know what I will do. Really, how hard do I have to fight? I feel as though it is all I am doing, 24 hours a day. Will things ever get better? If my post seems hopeless tonight, it’s just because I am so very sad over Ty, Ronan. I hope you two are both playing together in your super hero capes. Take good care of him sweet boy. It shouldn’t be this way.

I’m going to end this here. Your brothers had a good day. I tried my best but as always I carry so much sadness around in everything I do. I miss you so much. G’nite Ro baby. Sweet dreams. I love you to the moon and back. I hope you are safe.

xoxo

P.S. Hey Cancer. Fuck you.

Inferno Hiking. Safer than Meds.

Ronan. I cannot shake this funk. I have a few ideas as to why.

1) The maybe baby thing. I am honestly o.k. with it. Somebody asked me if we were going to try again. Well, we didn’t really try the first time and I don’t foresee us trying in the future. I will not be watching the calendar for when I ovulate. I can’t do it. It’s too much pressure. If this happens, I just want it to happen. I can’t handle the stress/worry/waiting/wondering/emotions that come along with the whole trying for a baby. I trust in you. If this is what is meant to happen, you will see to it that it does.

2) Fucking Easter is coming up. Fuck! Enough with these holidays! I think we all decided last year, in Coronado to ban Easter. If my memory serves me correctly, which it often does not anymore, we decide to ban Easter and celebrate “Feaster!” instead. I have no idea what this means but I am feeling the pressure to come up with a plan and come up with a plan, fast. For the sake of your brothers. I think we talked about how we will worship a chocolate easter bunny for the day. There will be no pastel clothing. No fancy clothes. No Jesus at all. Not that there ever was, so it won’t be that different, in that regard. I know the root of why I am having such an issue with this “holiday of pretend.” It is because it was the last holiday that you were here. I remember exactly what we were doing/where we were last year. I remember how I still not did think that you were going to die. I think everyone around us did, but of course, everyone hoped for a different outcome. I remember how happy you were but now I know you were in such extreme pain. You had to have been although your smile would have said otherwise.

3) I’m still fucking bloody exhausted. I think my body is having an allergic physical reaction to you being gone. Is that possible? I think that it is. I think that I am having it. I am trying my hardest to push my way through this. I don’t have a choice.

4) This whole 1 year thing is harder than I thought it was going to be. It’s distracting me from everything that I am trying to do/get done. Every single fiber in my body is missing you to the extreme. I can usually control my sadness, Ro. I can usually feel it, deal with it, embrace it, and it sometimes it does not feel so heavy. This has not been the case for the past week. This sadness that I am feeling, is so heavy that I feel like every step/breathe I take, is weighed down by 100 elephants. Everything that normally works for me, is not working at all. I am borderline scared.

Today, I was productive or as productive as I could be. I did some foundation things. I had a little lunch with two of the loveliest souls. I felt lucky to have them helping me. So lucky, Ronan. I am still amazed how due to your story, the most amazing people have trickled into my life, wanting to help and be a part of this change. I am very blessed in that regard. I came home after lunch and I swear to you, my bed was a magnetic force field that I could not fight. I crawled in it. I crawled into it and I felt like I was going to drown in tears/sadness and pain. I had to tell myself I could have 20 minutes of laying down. After 20 minutes, I yelled at myself in my head. Get up now. You cannot do this. You cannot stay in bed for the rest of the day. I made myself get up, out of bed, and back to our little mountain I went. I ran up it as fast as I could. I made myself almost throw up. I ran down it even faster so I would not be late to pick up your brothers from school. It was hot and the mountain was empty once again. Just the way I like it.

I picked up your brothers and we went to Rita’s Italian Ice place with some friends for an impromptu play date. I love things like that and I love the friends we went with. Your brothers giggles and smiles almost helped with my sadness. I ran into a mom I know. A mom that I don’t know all that well, but I always love seeing her. She has the kindest eyes and has a way about making me feel like even though she has no idea how I feel/what I am going through, she kind of does. I guess it’s because I can see the way she loves her twin boys so much. The same way that I love you and your brothers and I can tell she is a really good mom. I appreciate that so much.

I came home, helped your brothers with their homework, cooked dinner and that was all I could do. I slipped into bed, early. Not really sleeping, but tossing and turning. My sleep is all out of whack again. Go figure. Tomorrow, I have a day planned with Dr. JoRo. I obviously need it badly. I am hoping it will help with whatever is going on. I cannot take much more of this tiredness/fog/fatigue that I cannot get out of. WTF. It’s getting old.

That’s all for tonight, little one. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams.

xoxo

Who says you can’t buy love???

Apparently not America. But I do. Especially when kids die from cancer. And there is a Leukemia Drug shortage for our kids out there, who are fighting cancer. Please hold while I go kiss the Urn of my baby boy. Pretty sure some red roses and some diamonds won’t bring him back.

I’ll say it again. Valentine’s Day is for suckers, MOTHER FUCKERS!!!!!!!!! Way to take away from what is really important in this world. Like loving harder than ever before, every single day. How about using the money, spent on Valentine’s Day and finding a cure for childhood cancer instead? How about saving some kids? Sounds like a no brainer to me.

Valentine’s Day spending second only to Christmas

By Andra Bryan Stefanoninews@joplinglobe.com

Who says you can’t buy love?

For Valentine’s Day, Americans will spend an average of $126.03 per person on romance, up 8.5 percent from the 2011 average, according to the National Retail Federation. That’s the largest increase in 10 years. Valentine’s Day is second only to Christmas for consumer spending.

Area businesses, including florists and restaurants, are forecasting big spending this year. Sales are up at the Candy House, with locations in Joplin, Springfield and Redings Mill, and co-owner Pat Hicklin said she is “really hopeful that the recession is lifting.”

“Businesses like ours tend to be a real good gauge of the economy,” she said Monday.

On Monday, the Candy House shipped 600 dozen hand-dipped chocolate strawberries overnight to fill Internet orders. To keep up with demand, Hicklin said, employees began dipping strawberries at 3 a.m. Monday, and they will dip 400 dozen today for walk-in orders on Valentine’s Day.

“It’s wonderful,” said Hicklin, who with her husband, Terry, purchased the longtime candy shop and factory in 1999. “We don’t know what to attribute it to, whether the recession is getting better, or some people have told me they are tired of holding back. They are finally going to buy what they want to buy, hoping for better days.”

Valentine’s Day spending this year is expected to reach $17.6 billion, according to the National Retail Federation. Of that, $4.1 billion will be shelled out for jewelry, $3.5 billion on an evening out, $1.8 billion on flowers and $1.5 billion on candy. Romantic couples also are spending when it comes to Valentine’s Day dinner dates — an average of $146.52, according to restaurant ratings guide Zagat, compared with about $70 for a typical meal for two.

Jeremy Shuey, manager of the Red Onion Cafe in Joplin, said that holds true at his restaurant, which has been booked for reservations on Valentine’s Day for a month. It is one of the restaurant’s biggest nights of the year.

“It continues to be a night couples like to spend time together; it seems like they really want to treat themselves,” Shuey said Monday. “They tend to order fancier menu items, spend more per couple, order a bottle of wine, order high-end steaks.”

Cindy and Elie Riachi splurged on a special Valentine’s Day treat for their children, Daniel and Andrew, a few days early. They spent about $50 on Saturday — a splurge, Cindy Riachi said, as the family doesn’t eat out much.

“I like having the kids do special events with us, as that is why I had them, to spend time with them,” she said.

The National Retail Federation also found that consumers will spend an average of $25.25 on their children, parents or other family members. That’s right in line with what Riachi spent at Target on two Disney movies to give as Valentine’s Day gifts to her boys.

At Dillons Floral in Pittsburg, Kan., florist Carol Hornback reported that six drivers were on the roster Monday, and eight to 10 drivers were scheduled for today.

“Normally we have one or two,” she said during a short break between fielding requests from a line of customers. Florists at Dillons arrived at work an hour earlier than usual on Monday to keep up with demand, and they will arrive two hours early today.

The phones at some other floral shops went unanswered throughout the day Monday — an indication of how busy they were preparing for Valentine’s Day.

A dozen red roses usually cost about $60, according to the Society of American Florists, but on Valentine’s Day most people will pay about $80, the trade group said.

“Here, men are spending anywhere from $25 to $100, or sometimes more, and the majority of orders are roses,” Hornback said.

According to the National Retail Federation survey, men outspend women on the holiday by almost double, shelling out an average of about $169 versus about $86 for women. But they tend to do so at the last minute, making it hard for jeweler Chad Comeau, who owns stores in Pittsburg and Joplin, to gauge sales so far this year.

“We’ve had several buyers in today,” he said Monday. “But in this business, men are the buyers, and they tend to wait until the last minute. Guys are extremely last-minute shoppers.”

Valentine’s Day is for Suckers

Ronan. All I want for this Valentine’s Day (aka the STUPIDEST holiday ever) is you back. Since that cannot happen, I am going to work really hard to make ROentine’s Day, somewhat nice. I’ve ordered our cupcakes to drop off to our lovies at PCH tomorrow since that is what we did last year. I am going to do it again for you, this year. Your daddy asked if I wanted to go out tomorrow night. I looked at him like he had 12 heads and said, “Not unless you are letting me go out, armed with a machete.” He said he would not, so we will stay in. Although going out, with a machete sounds like much more fun. You know, I wonder if I will like ANY holiday again. Halloween still seems alright… because it was your favorite. I’ve never been a big fan of Valentine’s Day. Now, it seems extra stupid but that could just be because I am a mad/sad/angry/crazy mama now. Or it could just because I have always thought a holiday to celebrate, “LOVE,” was a commercialized scheme to buy overpriced red and puke me now pink shit. We should be celebrating love everyday. Especially if we have all of our kids. I don’t have that anymore so I get a hall pass to do whatever I want. So now, Valentine’s Day is for suckers and ROentine’s Day will take over. What will we do tomorrow? We will not wear pink. We will not wear Red. We will maybe wear all black because my heart now feels dead and black. But we will do nice things for other people. We will do something to make someone else, smile. We will drop off your cupcakes. We will not buy flowers which are a waste of money and all they do is DIE. Fuck flowers too. Add it to my list of things I hate. No flowers. Flowers are too pretty for our black broken soul.

Quinn has been sick the past couple of days. I’ve been playing the very patient, loving, nurturing mama role. Today, I’ve decided that I’ve had enough and only want you back so I can take care of you and your cancer. His cold/stomach ache is wearing thin on me. I had that moment, where I panicked and thought his stomach ache actually meant he has a mass in his tummy and it is cancer. I took him to the doctor to have him checked out. We were sent home with its nothing. We are of course, always skeptical as our mind now thinks it is the worst thing possible. Isn’t it fun, living in the world of your child died from cancer so now everyone is dying, too?? Love this life, Ro baby. It’s amazing.

What else has been going on???? Just the usual madness. Went hiking yesterday. Put on my Van Fuckin Halen shirt. Your daddy looked at me. “You cannot wear that hiking. Why do we always have to have these conversations?” I just looked at him. “Ronan is dead. I can do whatever I want. I’m wearing it hiking today.” I left the house in my shirt. Only one lady said something to me. She said, “Van who?” I said, “Van FUCKING Halen, lady!” She laughed. Ha! A stranger with a good sense of humor. I went with Mia’s mama, Sandra. So I had an extra reason to wear that shirt yesterday. Two cancer mama’s. One with a baby who is dead, the other mama with a baby who is in a wheelchair from her cancer treatments. I was prepared to defend us if we needed it. We didn’t. Everyone on that mountain knew better than to mess with us. They could probably see the anger/sadness in our eyes. I can guarantee you, we were the two most broken-hearted mama’s there. But it was nice to be with Sandra. We will have an unspoken bond/friendship for the rest of our lives. But I wish it didn’t happen this way.

Today, I stayed at home with Quinn. I was in the middle of my own pity party when a little text message popped up. Tears sprang to my eyes. No. NONONONONO. Fuck!!!!!!!!! Quinn watched me. “Mom. What’s wrong?” I just looked at him. “Nothing baby. Just a little sad. Just a sad day.” Your daddy came home to the rescue. I slipped out for a dark run. I had sent our favorite lovie an FUC (fuck you cancer) text which in turn, made my phone ring 10 minutes later.

Mr. Sparkly Eyes:”Where are you?”

“I’m running.” which was true but I was also running while crying hysterically so I know what I sounded like.

Mr. Sparkly Eyes: “I need you to stop. Stop running. Please go and sit down somewhere and listen to me.”

I sat. I listened. I also screamed, cried, sobbed, and yelled into the phone.

But I calmed down. I also laughed at something ridiculous that was said. I was also told not to give up. That FUC is nowhere close to being done. I stopped crying. I told him thank you. I looked up at the sky thanked you, for our lovie too. I promised you two I won’t ever give up. I won’t break my promise.

I continued my run. I didn’t listen to my music. I talked out loud to you instead. I begged you to keep working as hard as you are working…. I begged you to continue to push me. I begged you to watch over our little friend. I begged you to take care of some things up there, so I could take care of some things down here. I screamed how I never wanted this. How I only wanted you. I screamed that I would fix this because your death, will not be for nothing. I imagined living this life, with you again, but next time it happens and you get this disease, there will be a cure so you won’t have to die again. I just want you back now. I don’t want to have to wait to see you, until it is time.

I’m tired. I’m sad. But I don’t have a choice. This is not me, Ronan. I don’t want to do any of this, but I will. I will do this, because you are the one pushing me. I know this. I will listen to you for the rest of my life. I love you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Christmas 2010

This  post was from last night. We have been having Wifi problems at the RMH. That’s why there have been lack of updates. I’ve missed you all and hope you had a great night last night. We had a beautiful time together and now the city is covered in a blanket of snow. Below is what I wrote last night. Love to you all.

Silent Night…. Holy Night…. All is calm… All is bright….

This is the lullaby that I have hummed to Ronan since he was born. I’m not sure why, but I hum or sing it to him every night before he goes to sleep. Since he was diagnosed, I’ve stopped singing it to him. I’ve taken the most beautiful song, and turned it into something crazy in my head, telling myself that I don’t want it to ever be a silent night because that means my baby will be up in heaven and not with us anymore. I’ve only told a few people about this… Tricia, Marisa, and Charisma. Charisma is the one who told me she understood, but really thinks the song is not about what I have turned it into. It has always been my favorite Christmas song; until now. What we are going through is so scary to me that I have taken one of the most beautiful things and turned it into something ugly and sad. Sometimes I feel as I don’t have control of the feelings and thoughts I have. How can I?? My baby has cancer; nothing will ever be the same.

We had a great Christmas morning. We stayed in our room, opened up gifts, and the boys could not have been happier. We were all together as a family and it was such a beautiful thing. As they were busy playing with their toys, I bundled up and braved the 29 degree temperature and headed out for my Central Park run. I ended up running 10 miles and it was beautiful, brisk, hard, and just what I needed. Before I came on this trip, I was telling a good friend of mine how I came here to run the NYC Marathon a couple of years ago and how I would never do another one again because it was so hard. He looked at me with a sparkle in his eye and goes, “Oh, you’ll do another one…. Just you wait and see.” As I was on about mile 7 tonight, I thought to myself… I am so coming back here when Ronan is all better to do this marathon again. I imagined Ronan waiting for me at the finish line, so proud of his mommy. I will run it for him, and for NYC. This is the city that is going to heal my baby and is healing his mommy as well. There is no place I’d rather be right now. Funny how this city feels like such a second home to me already. That is because it is full of all things magical, miracles, and it is all about taking that tumor out of Ronan. January 3rd cannot get here soon enough.

Tonight was bittersweet. I have been doing o.k. here at the RMH, but tonight my emotions got the best of me while we were doing the whole Santa thing with the boys and all of the other families here. They do such a beautiful job and are so generous with the gifts. I was standing up next to Woody and the boys, just kind of soaking it all in. Then the tears started and I couldn’t get them to stop. It was all too much. The room was full of the most beautiful kids, who are fighting so hard for their lives, but are still so happy. Then there were my 3 babies sitting there together; like it was just another Christmas. Woody pulled me down next to him and let me cry on his shoulder and tried to comfort me by whispering to me how lucky we are to all be together and that’s all that matters. He keeps telling me that together, we can get through anything. Team Thompson, as he likes to call us. He is such a good man. After awhile, the tears stopped but after the boys’ got their gifts I took Ronan up to his room. For one, he wanted to go, but two, I felt an anxiety attack coming on. Still not doing well in big social situations I guess.

I am fighting everyday to be brave and strong. Sometimes, this all still becomes too much. This will never become easy for me, everyday is a struggle. Imagine living everyday of your new life full of hurt, and watching everyone around you hurt as well. It is so hard, so unfair, but I know I just have to keep moving forward. I’m very thankful to be married to such a strong man. I would fall to pieces every second of the day if it were not for him.

That’s all for tonight. Time to cuddle up to my little boo and kiss that sweet, bald head of his for the millionth time today. He is our Christmas miracle, and he is the sweetest Christmas gift I have ever received. He is teaching us so many lessons along the way.

Love you all. Hope your holidays were so very, very blessed.

xoxo

A picture is worth a thousand words… and a thousand tears

Last night, I took a picture of Ronan, and it took my breath away. He doesn’t even look like the same baby anymore. Cancer has taken over and completely changed his appearance. He is skinny, pale, his eyebrows and eyelashes are gone, his bald head and sunken in eyes are heart wrenching. After I looked at the picture, I immediately went into my room and started to cry. Woody came in after me and I said to him, “Is he dying?” Woody immediately grabbed me and told me to knock it off, that although his appearance is changing, his spirits are not. He was so happy and active yesterday. He ran around all day telling us all how happy he was and how much he loved us all. He played a lot of football and is still eating a ton. He did get sick in the middle of the night last night. This is a huge reason of why I have him sleeping in bed with me. I never know when something like this will happen and the last thing I want is my baby boy to be alone in his bed, scared, and not having me right there to take care of him. He was upset, but after I got him and everything cleaned up he told me thank you and went back to sleep. His manners have become so beautiful. Everything is thank you, you’re welcome, bless you, or his favorite; thank you so much. It is adorable. My favorite is when he says to me, “I love you, so much. I love you the most.” He tells me that a lot. The “I hate you’s” have become less and less. His temper tantrums seem to be settling down as well.

We have a busy week ahead. I’ve got so much to get done before we leave for New York. I said to Woody, “How in the world am I going to pack for over a month in New York?” Luckily, we’ll have a washer and dryer, so that will help. But it’s still a lot to wrap your head around. Woody has been trying to talk me into a Christmas Tree and doing lights on the house. I told him no way. I just want to deal with Christmas when we get to New York and soak it all up then. We will make is special for Liam and Quinn but a tree this year seems pointless. Talk about doing it up in New York…. I’ll be there for Christmas, my 9 year anniversary, New Years Eve, and my birthday. Ronan’s surgery is all set for January 7th now. I am ready to get this show on the road and this freaking tumor out of his abdomen.

It was great having my mom and Jim here. They were so helpful and I am glad I was feeling better and didn’t freak out on my mom like last time. It was good for her to see that I am “feeling better.” Whatever that means. I think it means my medication is working. I feel more balanced and stable I guess. The boys’ loved having Jim here. They did a lot of playing and laughing. It was good for everybody…. I only wish they could have stayed a few more days so they could have spent a little more time with Ronan outside of the hospital. I am trying to talk my mom into coming to New York for a few days to spend it with us. I really hope she will.

I hope you are all having a great weekend. I think of you all often and thank you again for all of your love and support. Enjoy your Sunday and count your blessings!!

xoxo

Happy Halloween!

Hope you all had a great Halloween! We had a wonderful one… Ro was able to trick or treat and everything! We started off at our friends, The Tarbell’s house for some great company and delicious homemade pizzas by Mark himself. After that, we went over to our friends, The Willits for some trick-or-treating. Gay drove about 12 of us around in a golf cart for a good couple of hours. Wheehew!! It was a golf cart full of all boys! Such fun!! Ronan kept right up and was running all around until left there around 9:30. It was late for a school night, but everyone was having such a good time that it was hard to wrap it up. Thank you to our wonderful friends tonight for celebrating with us. It was very special to us to have Ronan out and about. Tomorrow, we start Round 4 of his magic medicine. We will be in the hospital until Thursday or Friday…. assuming all goes well. Please keep our little guy in your thoughts and prayers… hoping he will get through this round as easily as all of the others.

We’ve had a great break from the hospital but it’s time to knock this round 4 out. One more check mark off our little guy’s list. He is not psyched about having to go to the hospital tomorrow, but hoping he will not put up too much of a fight. I hope you all had a wonderful Halloween and enjoyed your kiddos to death. Goodnight to our army of angels out there.

xoxo