Only Eddie Vedder could drink wine on a stage and make it look badass.

tumblr_mwo8wu69XE1t08wpbo1_500

Ronan.  Do I usually have this hard of a time, every year, right before the holidays? I think so, but to know so, I’d have to go back and read my blogs from the past years.  I’ve been doing enough reading of my blogs due to this book writing and I don’t feel like going back to read about the holiday seasons and how hard they have been for me every year since you left.  Every day is hard without you, but this time of the year there seems to be a shift about me that I cannot control.  Everything feels extra heavy, hard, sad, and the slightest things take up every ounce of energy I have just to get through the day.  I have been getting through the days alright really; I suppose.  That is actually a big fat lie.  I’ve been a fucking mess, but hiding it pretty well.  I’ve learned to become the ultimate pain hider.  I have learned to be present, to smile when all I want to do is cry, to be productive when all I want to do is curl up in my bed for a week, and to throw myself into things that take a lot of work, but the work leaves me distracted.  Oh, I’ve also been taking the best care ever of your Poppy sister 24/7.

I may have lost it last week which left me doing my normal screams and crying to your Mr. Sparkly Eyes.  “I think I’m having a mid-life crisis.” “Why the fuck did this happen?” “I talked to George Clooney last night and I’m going to run off with him.” (inside joke, but I really did freaking talk to George Clooney thanks to one Fairy Bad Ass RoMo) And my all time favorite, “Where is Ronan and who is taking care of him?”  I got sat down and talked to in the harshest but kindest way.  I was told I was in fact not having a mid life crisis, that everything I am feeling is just due to losing you which I of course already knew, but it was nice to hear it from a rational person.  “Listen, I cannot even fathom what you have gone through and will go through for the rest of your life.  I hurt badly from this and I only get to feel this on a small scale compared to you.  You have to carry this around with you forever, while the ones who cared about Ronan, your family, your friends, get to go on with their lives.  You don’t.  I cannot imagine what that must feel like for you.  But you are doing such amazing things and even if you can’t see it now, you are changing the world because of him and because of your pain.” I sat, listened, and fought back my tears the entire time that I was with him.  I let his words soak in and lick my wounds for a while.  “Tell me what I can do for you. Please.” I looked down at the floor and thought for a bit.  My list came in my mind later as I named off a few things, but really just thanked him for being such a dear friend.  He said some more things to me that I won’t repeat, but left me saying, “How do you know that?  How do you know everything?  Nobody knows that.  Does Ronan talk to you and tell you these things?”  I honestly think you do, Ronan.  There is no other way to explain how that man knows the darkest parts of my soul and heart, yet he is not afraid.  You only left me with the best and for that, I will always be thankful.  I sat quietly and watched as he bounced your baby sister on his lap and kissed her up and down.  She is so lucky to have him as her Godfather, to love and look after her.  I know he will keep her safe.

I’m full fledged in the middle of writing this book.  I told your daddy if I had a month, uninterrupted, I could finish it, easily.  The problem I’m facing is I may have too much material, and too much to say.  Go figure.  I’ve been writing about your treatment, which has been hard.  Reliving the things you went through, has not been fun and it’s not what I want this book to be about, so I’ve been trying to make this section, as short as possible.  This book writing has left me not sleeping or eating well and may be part of the reason why I feel like I’m no the verge of a breakdown.  I just keep telling myself, I’ve got to just get though this part, but it’s not like I have anything to look forward to next as I will just be writing about your death.  Fucking cancer.

As far as an update goes, things here for the most part have been normal.  Your brothers are playing a slew of sports 24/7.  Basketball, Baseball, and Flag Football.  I, of course, look for you on every field and on every team.  It still blows my mind that you are never there.  I know for a fact that you would be playing all the sports that your brothers are and dominating in every way.  You were always are mini Pat Tillman who was going to rule the world.  Poppy is developing such a little personality and at 7 months, is already trying to walk.  She has been keeping me on my toes and the determination that I see in her eyes reminds me so much of you.  My days are mostly spent taking care of her while continuing to fight for you and all that was stolen from us.  I’ve been hiking like crazy, with Poppy in tow of course.  She loves it and usually just falls asleep the entire time.  It’s our peaceful time to spend with you and the small time out of my day that I try to take for myself to be with my grief/plot how I’m going to take over this fucked up world.  I went to the Pearl Jam concert a few nights ago with your daddy, Uncle Jay, and Char.  Sometimes all you need in life is a little Eddie Vedder to remind you of who you really are.  I love that man and the concert was unreal.  By far one of the best ones I’ve been to.  Eddie Vedder will forever be one of my idols in life as I appreciate so much how he just lives his life the way he wants, with no apologies.  He just is who he is.  Not to mention the fact that he is deliciously handsome, insanely talented, and I could just stop and melt right here.  It was a great night, to say the least.  Pearl Jam ended the concert with “Keep On Rocking In The Free World,” and of course I sang along as loudly as I could while I thought of you the entire time.  I miss you so much, Ro.

Time to go, little man.  It’s raining like crazy here today.  I miss you.  I love you.  I hope you are safe.

xoxo

P.S. For those of you who have been trying to order some things on our Big Cartel site, I SO apologize.  We have been dealing with some *cough cough* technical difficulties.  It is being worked on and will be re launched soon as we also have a new foundation logo to unveil.  Our seal needed a little make-over and update.  I’ll keep you posted on when things are ready.  Thanks as always for your love and support.

Life’s not about waiting for the storm to pass…It’s about learning to dance in the rain while jumping in some mother fucking mud puddles.

Ronan. About 3 weeks ago, Dr. JoRo said to me, “Hey, do you want to hike Mt. Wilson with me, on April 26th?” I didn’t even look at my calendar. I just gave her an, “Absolutely.” I didn’t even know what Mt. Wilson was, except for it was in Sedona and I knew it would be an adventure. I could not have imagined in my wildest dreams, the adventure it would turn out to be. I woke up this morning at 4:30 a.m. I quietly threw together my things and headed out the door for the drive up to Sedona. A drive that I have come to love so much. It started to rain on my drive up. Dr. Jo said it might rain today. “That would be the best!” I said to her. I arrived to Jo’s around 7 a.m. She was all ready to go and we called her neighbors to see if they were ready to meet us. They were, so we all piled in their truck and headed out for our little hike. I had on shorts, a tank top, my purple coat and your backpack full of water and your GiGi. This is Arizona, it’s April, and it’s been hot. We don’t really get rain in April, so my outfit seemed appropriate.

We quickly arrived at Mt. Wilson. At 7,122 feet, it is the highest of all the mountains in Sedona. It is breathtakingly beautiful. We started our hike and for the first 10 minutes, I was warm. I was a little bummed out that the sun was starting to peak through. I unzipped my jacket and went, “Here comes the mother fucking sun. Again.” I was really needing a break from the inferno today. Up we went. Dr. Jo climbed a tree to hang some of your bracelets on it. I started snapping some great pictures of her. She is such a little spicy monkey, like you. On her way down, snap went the branch due to it being all rotted and dead. She fell, but caught herself just before landing right on top of a cactus. We starting laughing and the first war wounds of the day, were earned. I noticed the clouds rolling in and the rain that started to trickle. A smile spread across my face. We continued on. Within minutes, the sky had turned and we were getting rained on like I had never seen rain before on an April Arizona day. I was snapping pictures, left and right. We both kept stopping to take in the views. Soon the thunder and lighting started up. “It’s Ronan,” I said. “He’s mad.” Pebbles started hitting us in the face. “HOLY HAIL!” I cried out. “I told you he was mad! Ouch!” It was hailing on us, hitting us both in the face, and we were laughing. The wind started howling and whipping around us. We still had a couple of hours to go up the mountain. The rain did not let up. At all. We were sopping wet from head to toe, but we still continued on, determined to make it to the top.

I felt like we were transformed to a bunch of different worlds today. I said to Jo, “I feel like we are walking to the end of the earth.” She agreed. I am quite certain, that it was you today, Ronan, whom was in charge of this weather. You know how the dreary, rainy weather is one of my favorite things in the world. You know how much I miss it. You know how much I miss you. I think this was your way of crying for me and letting me cry for you. With the millions of tears that poured down on me today. The millions of tears that will never add up to all the tears that I’ve cried since you’ve been gone. Today, the weather was your tears and my tears, combined. Together, the sky and the heavens above, wept for us.

Dr. JoRo summed up our hike like this:

Ecopsychology. Bear. Gigantic falling trees. Hail. Raining four straight hours. 40mph wind. Sloshy mud. Lightning. Tree climbing. 17 miles, and 7000+ feet. 35 degrees. Muddy falls. Drenched head to toe. Never done anything quite like this. It was good to do for a very special little boy who is loved and MISSed. Pilgrimages of remembrance don’t get much better than this. — with Maya Thompson.

It was all of those things and more. So much more than I could have ever imagined. Once we got to the top, it was so cold that we could see our breath. We were not prepared with any water proof clothes, our lips were blue, and pretty much every body part was numb. I could not feel my legs or hands. I think I may have thought to myself, “There is no way we are going to make it down this mountain. They are going to have to send a search party.” We stayed at the top but not for long. Between the rain that was coming down and the wind, it was almost unbearable. I started to lead the way down the mountain. I stayed with Dr. Jo and her neighbors for a bit but I needed to run. I felt myself getting angry and sad and needed to take out my energy on something. Soon, I started running and didn’t look back. I ran as fast as my feet would carry me. I jumped over broken down tree stumps, over boulders, through sticker bushes, slipped all over the place in the red mud that felt like quicksand on my feet. It just continued to pour down rain and did not let up at all. At one point, I had to pee so badly, but it was hailing again. “Oh fuck it,” I said. Down came the shorts and my bare ass was pelted by the hail coming down. I busted out laughing. Today may have been one of the craziest things I’ve ever done in my life, besides skydiving. Bare ass in the air, covered in mud, drenched from head to toe… so totally badass. I felt like I was on some adventure extreme sports show, roughing it in nature. I would have totally beaten all the other contestants today, Ronan…if it had been a competition. I would have beaten them all, done anything and everything, to get you back. That’s how I felt going up that mountain today. Do not stop. Keep going. You are not cold. You are not in pain. You are alive. So you don’t get to have any excuses. You don’t get to wuss out. You don’t get to give up or turn around. You can do this. Ronan would give anything to be here, living life, growing up, and doing these things. He doesn’t get to, so you have to do them, for him. I continued sprinting. I had a baggie of your ashes with me. I haven’t ever spread them out anywhere before, besides the lockets that I wear and the one I gave to Fernanda. I carry your ashes with me, a lot of places, but never leave them anywhere. I wasn’t sure if I was going to or not today. It just didn’t feel right. At one point, I was running so hard and so fast that my legs felt as if they were on fire. I turned a corner and it was out of nowhere, the most beautiful field of the brightest yellow wildflowers appeared. They were so bright, that it was almost blinding. I stopped dead in my tracks. Yellow. Bright yellow. Scatter them here, on top of these flowers. I did. I know you know why. It was the perfect spot. I kissed the top of the flowers all covered with some of your ashes. Just as I did this, the rain started pouring down so hard that I could hardly see. I started to cry. I told you how sorry I was. How much I love you. But mostly how sorry I was. How sorry I will be for the rest of my life. You should be here. I should not. I’ll never understand why this was you and not me. You did not deserve any of this, Ronan. I would have given anything, for this to be have been me. Anything and everything. Fate is cruel. Fate is not kind. Fate is a fucking asshole. Especially when it comes in the form of sweet, innocent babes getting cancer. And then dying from it. Fate can go and get fucked.

I ran as fast as I could down the mountain. I had painted mud war stripes on my face. I live in a war, everyday of my life. They were necessary to wear today. They made me giggle. I purposely jumped in every single huge mud puddle that came my way. I did this for all of you, of course. I laughed out loud. I pictured you watching me and what a sight I’ll bet it was. My purple jacket, against the red contrast of the red rocks, flying down Mt. Wilson today in the pouring rain, laughing, crying, screaming… but most of all feeling something other than the fucking pain I feel 24 hours a day. Feeling something other than feeling dead. Today, I felt alive and it felt alright. And I don’t need any kind of bullshit medication to make me feel this way, Ronan. You know what I need? Exactly what I’ve been doing. Nature. Exercise. Mindfulness. Pain. Honesty. Love. I will survive this, thanks to those things and nothing else. Nothing else that comes in the form of a pill anyway. A pill for grief is absurd. A pill for grief is madness. A pill for grief will only create a bigger problem. There is a simple solution, really. It’s called how about feeling, what you feel, when you feel it, and facing it head on. That’s what a brave person would do. That is what a strong person would do. Those are the two things, you kept saying over and over to me in my head today. I heard you about 50 different times. “Mama. You have to be brave and strong, because I was brave and strong.” I know, Ronan. I know. I hear this a lot from you. I’m listening.

So, today. Today was one of the best days of my life that I have had, since losing you. I learned that I am capable of so much, Ronan. I can do all of this and I know this due to having days like today, which don’t happen very often. I went back to Jo’s after our hike. We showered, ate, played some ridiculous card game, laughed so hard that at one point, her son, Josh, fell off of a chair. I would not be doing alright without her, Ronan. She is such a huge factor in this process for me. She has this grief thing figured out and the funny thing is, it really has nothing to do with science. It has nothing to do with medication. It has everything to do with love, compassion, empathy, pain, laughter, passion, and just letting one find their own way. Whatever that may be.  Without the judgements.

It’s super late. I’m so tired from today. No Ambien for about a week now. Good girl. I hate that shit. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

This slideshow requires JavaScript.

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!