An Inferno Dark Death Hike that should have resulted in a Heart attack.

Ronan. Someone had a party in your room last night and it was not you. That would have been me and my friend, Ambien that I have not taken for weeks now. It’s funny how just when you think you are making progress with little things like a normal sleep schedule and BAM! Out of nowhere, 10 giant steps back. Where is my natural sleep remedy, your New York Miss Macy when I need her? And why does that girl always relax me so much that I sleep like a baby when she is around? Insomnia strikes again tonight as well. Good times around here.

I had a meeting this morning. I felt like a zombie. I took your brothers with me. They quietly sat at the table with us and ate their breakfast. Not a peep was made. Sometimes they are so good that it makes me want to scream, but I was thankful for it this morning. After my meeting in regards to the Sept. 29th event, I ran your brothers to basketball camp. I went by Dr. JoRo’s office to sit and get some things done. She has been letting me use it while she hasn’t been there. I think I was pretty productive but I ended up crying hysterically when one of my MISS mama friends, popped her head into the room to see how I was doing. I tried to say fine, but the tears that followed told the truth. She came and hugged me and sat with me for a while. She told me about the dream she had of you. She asked if there was anything she could do. I just told her no. That there was nothing, anyone could do. She said she knew. I left there shortly after that as I had to pick up your brothers. We came home and spent the rest of the day, hanging out. I made them lunch and tried to do all the normal things that a normal mom does during the day when she does not have a dead child. It still feels foreign to me to go on with normal day to day things. I would give anything back to go back to our cancer world where all I did was take care of you and your brothers when I could. It is such an unfair world but it is so much less cruel than this. Your daddy came home and I told him I needed to go hiking. He took your brothers to Costco and to play basketball for me. I headed up to Camelback around 6:30 p.m. It was still so bloody hot out. I hiked that mountain as fast as I could. At one point my heart was racing so quickly that I thought to myself, I wonder why my body doesn’t just give out and have a heart attack right here. I wonder if this is what it feels like? I was panting so hard trying to get up the last stretch that I could not even breathe. There was some dude behind me. Ummmm, no way was I letting him beat me. He didn’t. I won the little made up competition in my head. I fell to the ground at the top as I could not even stand. I sat there and tried to get my heart rate to come down. I was dry heaving but due to not eating the entire day, I had nothing to throw up. I know I should have been up walking about but my legs would not let me stand back up. I soaked up the bright pink sunset. It was gorgeous up there. I spent way too long at my church, but that tends to happen to me up there. I could sit for hours and talk to you. It was already dark as I headed back down. Dark on Camelback is not a good or safe thing. The trail is steep, rocky, loose gravel everywhere. I did my best to navigate my way down with the little light that was left shining from the moon. I left my headlamp in the car. I was in a fuck it all mood today so fuck it all is what I did. The headlamp did not stand a chance of making it into your little backpack. I got down, somehow. Guided by you of course. It’s the only way I get through things now. I came home, threw off my drenched clothes and got in the shower. I felt so tired that I was sure tonight was going to be an easy night of sleep. I snuggled up to your daddy. I tried to be peaceful but that did not work. I ended up throwing pillows, tossing and turning only to wake him up from his very peaceful sleep of slumber. I told him I was sorry, I loved him, but had to get out of our room. He said it was alright but I know how much he misses me when I don’t sleep in our bed with him. Maybe I’ll attempt to go back there later.

I found out something from Fernanda today. Something that she didn’t tell me but she should have told me. I am just thankful that it is you, who is watching over her and taking care of her to make sure she is o.k. I know she has been talking to you a lot and asking you to help her with some things. You are being such a good, brave boy by taking good care of her so nothing can happen to her. I need her here, for a very long time. Remember how good of care, she took of us? I won’t ever forget it. Now it’s your turn, to take care of her, o.k. baby boy. I know you always are. Thank you for that.

I’m queasy probably from the way I over did things today. I’m getting sleepy. I think I’ll go and cuddle up to that daddy of yours. Goodnight baby doll. I’m so sorry. I miss you. I love you. I hope you are safe.

xoxo

Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

Snow Falling in Flagstaff

Ronan. Guilt is what I feel at this time, in this moment. For living this life, without you here. For the smiles that I’ve smiled, for the laugher I’ve done, for the love I’ve given to your brothers. Guilt for going on when you know, all I want to do is be with you. I wonder if the reason you insisted on being with me, almost every second of every day of the almost 4 years that I had you, is because you knew you wouldn’t be able to stay with me forever. I wonder if you miss me as much as I miss you. I wonder if you are as sad as I am because we are apart. I think that you are and it kills me that there is nothing that I can do about it. I can’t wipe your tears, hold you close and tell you that everything is going to be alright. I can’t promise you that I’ll never let anything happen to you, because it did. The worst possible thing that could have happened, did. And I will never stop being sorry for that. It is so unfair that the four of us are left here and you are gone. I constantly feel like I have forgotten you somewhere. I am constantly looking over my shoulder for you to come running around the corner. I don’t think I’ll ever stop looking for you.

I have been struggling with my sleep so much. The devil, Ambien has been in and out of my life since you were diagnosed. I try not to take it, but I’ve had a solid 3 weeks where I have taken it almost every night. Dr. Jo told me to try Valerian Root last week. She told me she takes 2 of those and she is out cold. So, I took 4 a few nights ago and nothing. I ended up taking my Ambien instead. I haven’t taken my Ambien for 3 nights in a row now. It has been horrific. The first night I fell asleep in our bed, with your daddy. I was in and out of sleep the entire night. I felt like my body was on fire. I had the most awful nightmares. I was watching myself scream your name, knowing that you were dead, but nobody could hear me or help me. Sounds like my real life. When I take Ambien, it puts me into such a heavy sleep, that I don’t dream at all. When I don’t take it, I toss and turn all night long, only to dream the most awful things. So what’s worse? I don’t know as they both seem bad. I know that I don’t want to rely on something to sleep so I am going to try to continue to tough this out. And if I need a break every once in a while, for now, it is o.k. Dr. Jo is trying to get me to meditate before bed or to try some yoga. It’s worth a shot, right??

We spent the weekend up in Flagstaff. It was another 3 day weekend and staying home just didn’t seem like an option. We tend to go stir crazy without you around. It’s like everyone is trying to overcompensate for the fact that you are not here. We headed up on Saturday and spent a couple of days enjoying the cooler weather and lazy days. Your daddy was actually able to relax. I tried too but it was hard to be up there for the first time, without you. I had a moment where I was walking into the living room and Liam was sitting down at the table on the floor. The top of his head, looked so much like the color of your hair, that I thought it was you. It was like I had the wind knocked out of me when I realized it was not. Your brothers were so kind to each other this weekend. They are such good boys. They didn’t fight at all, which seems so rare these days. I watched them as they played together, took care of each other, and helped out with a lot of the things we asked of them. We all snuggled on the couch and watched some movies, your daddy took them on an Arctic Cat ride, I took a long nap with Quinn, which I never do anymore. I snuggled up to him and let him remind me of you and the way we loved to take our naps together. Your brothers were extra sweet to me this weekend. I think they could tell I was sad about having to be without you, doing our normal family things that we loved to do. It snowed up in Flagstaff last night. I watched the snowflakes fall with tears in my eyes. You would have gone crazy over it and made me take you out in the middle of the night to play in it. I would have without hesitation.

It’s going to take a lot to heal us all. We all have some good ideas, of some things that can help. We are all being very open about our sadness and we talk about you all the time. But we are a different family now as we are all different people. Even your brothers. I keep wanting to write your little brothers. As if I feel that you were older then they are. I guess due to everything you went through and how strong you were about it all. I guess due to the fact that I now feel like you are older than them and you are the one watching out for them and protecting them. And the wisdom that you always had as you were so much wiser than your almost 4 years old of age. I always knew this about you. You truly were a gift to us all.

I have a busy week as I am leaving for New York soon. My solo trip that is much needed. I need some time to go back to our favorite city where I can just be for a little while. Some plans are falling into place which I am loving. I planned this trip without having anything to do but some very nice things are coming about. I am excited for the little adventure we are going to have together as I know you will be with me, the entire time.

Alright little man. I love you so much. I hope you are safe. I miss you so very much.

xoxo

Your Sparkle will Shine Forever

I’m not sleeping. I can’t. Could you? Could you sleep, without being able to kiss your baby goodnight? Knowing that the place that he once slept, is empty. Knowing that his little closet, filled with his clothes and shoes, will never be worn by him again. Could you sleep? Could you drift off into a peaceful place even for a few hours, to escape the nightmare? For me, it is physically impossible.

So, I sit here instead. Wishing so badly, that he would come running into my room in the middle of the night, just because he missed me. Wishing to be able to complain about the sleepless night I had the night before, because he was up all night, with just the flu. Wishing I would be exhausted tomorrow, because I had him to take care of all night long. Not because of the fact that I cannot sleep, because he is dead.

DEAD.

MY CHILD IS DEAD

What that does that even mean?

I GOOGLED IT. Too many raw things appeared. But nothing as raw and painful of having you not here.

I FOUND THIS. IT IS AN INTERNAL SCRIPT FOR PARENTS WHOM HAVE LOST A CHILD. What they may be thinking and feeling.

I concur.

  • I have failed my child.
  • I can’t live without seeing my child’s face.
  • I can’t live in a world where my child is a statistic now.
  • No one needs me now. My life has lost purpose.
  • My future – as a mother, as a father, as a step-parent, as a grandparent – died with my child.
  • I have regrets for things not said/done/realized before the death.
  • I should have prevented it.
  • I am alone. Other people grieve, but cannot share MY grief or make it less. They do not understand the depths of my grief.
  • My energy is gone. My will to live is gone. All around me, I see and feel the sadness and emptiness.
  • The world failed me. God failed me.
  • I am only living now for my other (children, spouse, partner, family, friends, profession). I am no longer living a life worth living for me.
  • I failed my child. (It usually begins and ends with this)
I know all of this. I believe everything above to be true. It is my life every single second of the day. I read the words. They make me sad. I take a break from Googling all things morbid, twisted and dark. An email pops up on my screen. I open it. I read it. I smile. I laugh. I cry. I have goosebumps. I feel alive. It’s from somebody I don’t know. There are a lot of those somebody’s now. This somebody made me feel proud of who I am. This somebody reminded me that although your little physical body is gone, Ronan. Your sparkle will stay here, forever. Thank you for this, to this M.o.M.M <3

Maya,

Im sure you get HUNDREDS of msgs on here as well as thru your email, FB, and your foundation but I feel like I need to write to you. You may not read this but I want you to know that Ro and YOU, Ms.Mama Maya are MAKING SHIT HAPPEN!!!!

I was not sent to your blog by a fellow reader, I dont know anyone personally (except for EVERYONE I have turned on to the blog since) that followed your blog or knew you personally, no one i know even knew of you or Ro before May 27th 2011 when I was sitting in the living room and happened to be browsing came across a post that had just been written, titled ‘Learning how to Live Half-Alive’. I had to click on it and see just what this post was and if it STOOD up to some of my fav lyrics.

Well, imagine my shock when not only did the blog stand up, it OUTSHINED anything i have EVER in this world even imagined of feeling. Tears sprang to my eyes, I felt like I had been punched in the gut, the wind knocked out of me, my mind could not wrap around the possibility that this was REAL LIFE and not just a blurb for the latest fiction novel from Jodi Picoult.

After reading that first post I clicked on the Baby Ronan link and within seconds had tears POURING down my face. I instantly had to know WHO this baby boy was that had ALREADY captured my heart? Can you believe that Maya? My whole sense of being ACHED for this baby whom I had NEVER even seen a picture of. I felt numb, my head was aching. I couldn’t believe that YOU were somewhere in this world hurting the way i was X’s a GAZILLION. I couldnt even (and still can’t) IMAGINE a pain that fierce. Right then and there The Thompson’s became a part of my family and heart.

My friends on my fb are re-posting my posts on childhood cancer, people are asking my kids and myself about our RockstarRonan bracelets, to which my 6-year-old replies, Ronan is the BRIGHTEST STAR IN THE SKY BABY!! http://www.rockstarronan.com. He’s a lil walking bill board for Ro and this horrible disease.

Next FUCKTEMBER I will be walking around with Info cards about childhood cancer and the BIGGEST sharpie i can find so that EVERY breast cancer sign I see gets graffitti’d on with KIDS GET CANCER TOO!! (sorry had to vent that it has been driving me crazy seeing Breast cancer start gearing up for OCT and trying to take the light from these BABIES who put all of their faith and trust into ADULTS who are supposed to be caring for and watching out for them?! and yet MOST turn a blind eye because it’s just too ugly. . . I honestly would not like to know the person who can look at RO, hear his story and simply walk away and DO NOTHING??)

I know that I have been rambling in this letter to you and I’m sorry. I really just wanted to let you know that you Ms. Maya and your A M A Z I N G baby Ro have touched the heart of a random stranger thousands of miles away and I will be by your side in this FIGHT of kicking cancers ASS every step of the way! I hope that one day our paths cross and I can meet you and hear some ‘spicy’ monkey stories, golf in some funky TUTU’s, blaring some Katy Perry while doing ALL things ROCKSTAR (:

Im so happy to read when you have a ‘good’ day, that means that even just a LIL bit of what I have been praying and wishing for you is starting to break thru the HELL you are living.

Love,

A MoMM <3333

PS. My grandma was THE BEST grandma in the WHOLE world!!! There is not a day that goes by that I dont think of her. Since she is no longer ‘here’ with me I KNOW that she is with Ro and since she was the best in the whole world she is DEF the best in ALL of the HEAVENS and she is taking care of Ro for you until you can. . . and she’s a stickler for brushing teeth and a SOFTY when it comes to rocking babies and snuggles <3

Bubbles galore. Just for you. Who cares that Quinn flooded everything? He did it, for you.

Fake it till you Make it

Ronan. Hi baby doll. So, last night…. not so much fun. I fell asleep from 11-1. Was up from 1-4:00. Slept from 4-6:00. Rise and shine, adrenaline pumping. I could not sleep last night to save my life. I wandered around the house, looking for you. I went into your room and wrote. I sat and cried. I took more Melatonin. It didn’t really work. I know why. It’s because today is Esther’s 4 months since she passed away. I was worried about Doriet. I called her this morning, after I took your brothers to school and had some time before I went to see Dr. Joanne. I needed to hear her voice and to let her know I was thinking of her. It felt good to talk to her and tell her I love her. I do. I told her I would come and see her. I really want to. I really need to. I will.

I saw Dr. Joanne today. I took your “GiGi,” blanket with me and wore my locket full of your ashes. We went over the worksheet today that she had me do. I started to cry as soon as we started going over it. She said I was really feeling it today. I was. We talked a lot about you. We talked a lot about me. I told her about the strong desire I have to still take care of you. How taking care of you, now comes in the form of taking care of me. I told her that I feel like I have to hit rock bottom, how I have to walk through Hell and back, to get through this. I told her how you are worth every amount of blood, sweat and tears that I have in my body. We talked a lot about expectations. She is glad that I am strong enough to stick up for myself and go through this the way I need to. Not the way anybody else thinks I should. I love her. She is such a powerful soul. She told me today that she can tell I feel like I have one foot in the world of the living, and one foot in the world of the dead. She gets it. She was exactly right. Nobody can understand the true pain of losing a child, unless you are a bereaved mother yourself. This journey is mine and mine alone. Nobody else’s. I am o.k. with that. I prefer it like that. The session was good.

We were about to end on a pretty good note, but then I had to pull out the journal that I found while cleaning out my desk a few days ago. I guess deep down, I’ve always been a writer. I’ve written for as long as I can remember. Never anything I was serious about, but I’ve always loved it. My words have always been hauntingly honest and insightful, but I never bothered to share them with anyone but myself. I never thought I was any good at it. Never had a reason to be. I found some really disturbing words written down, 2 days after your diagnoses. Call them my insightful ways. UGH. She sat with my words for a while and seemed taken aback. She was going to give me some homework, but decided we are going to take my words, and have me sit with them and to talk to you about the things I had written. To listen to what I would hear you say, back to me. I can do this. I can do anything for you.

I came home from Dr. Joanne and changed my clothes. I went and checked some things off of my “Shit List.” I went Inferno Hiking. I had a conversation in my head with the pretend paramedic who I was going to need to save me from that Pink Rattlesnake I’ve been dreaming about. I told the pretend paramedic that I was not afraid to die from the poisonous venom of a rattlesnake. That if my time was up, than my time was up. I told him how I had you waiting for me and if we were meant to be reunited, my life, would be ending in exactly the way that it was supposed to. I told him how you must miss me so much, that you are ready to have me back taking care of you again. I told him how I was not scared at all and I said all of this with a smile on my face. I have conversations in my head all day long with people I don’t even know. I have conversations with you a lot. “Landslide,” played on my iPod. I looked behind me when Stevie Nicks sang,

“I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down.”

I turned around and looked for you. I couldn’t see you. I cried as I ran as fast as I could up the mountain today. I screamed for you. I whispered for you. I listened for you. I pretended to see you, running up the hill behind me. I wished for death. It didn’t happen. I ran as fast as I could back down the mountain, hoping to fall and break my arm. Anything to feel a break from this pain of living without you. I made it to the bottom, soaking wet, but safe and sound. Guess today was not my day to walk with you again. To hold you sweet, soft hand and kiss your perfectly plump lips. It’s days like today, that I almost cannot take being without you. I tried to eat lunch. That went over really well. I threw it all up.

I picked up your brothers. They were so happy and excited to tell me all about their day. The good grades they got on their spelling tests, math test, AR Reading points…… They are happy. They are coming to terms with the fact that you are gone and are not coming back. They are so full of hope that the fact that it is not infectious to me makes me think that I am seriously disturbed. NOTHING MAKES ME HAPPY. NOTHING. Try swallowing the guilt that comes from that. I hope someday that I will be happy again. But I am not going to walk around and pretend that I am. Fake it till you make it. As Dr. Joanne said, I sure do put on a good game face. The best I told her.

I took your brothers to Sauce for an after school snack. I sat and watched as they gobbled up pizza and engaged with them, smiled for them, laughed with them. It was fucking exhausting. Also, I’m sure the fact that I had almost no sleep last night, didn’t help. We came home, emptied out their backpacks and lunch boxes and went over their homework. I told them they could have a break, some down time. I crawled under the covers. Your Daddy came home soon after that. I fell asleep for about a half an hour. I woke up to your Daddy, telling me he was going to take your brothers to play basketball. He asked if I wanted to go. I quietly told him, “No,” as the tears slid down my cheek. I felt like I had been run over by a bus. Soon the house was quiet and empty. I got up, unloaded the dishwasher and did all the good mommy/wife things that I am supposed to be doing. I called your Nana, whom I never talk to anymore. I felt guilty as she picked up and I could hear the excitement in her voice. We talked for a few minutes. She told me she is worried about me not eating. She told me she doesn’t want me to end up in the hospital. I told her, “Who cares.” She tried to gently scold me, all while telling me she wasn’t judging me. I told her I knew that. I know she does not. She is a good mom. I promise to call her more often.

I’m going to go now baby doll. I miss you so much. I love you to the moon and back. I hope you are safe.

xoxo

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Mama and Ro baby take NYC <3

Ronan and I arrived to NYC yesterday morning 5:30 East Coast Time. The flight was great, fast and Ro slept the entire time. We headed to our hotel, checked in, and we were in our room by 6:30 a.m. Ronan was chipper and ready to play, but I told him how it was really only 4:30 in the morning at home so we needed to rest before our big day. He didn’t put up much of a fight, crawled in bed with me and we slept a couple of hours. You’d think I’d be a zombie tonight but I’m not. Must be that NYC energy. We woke up, got ready and headed over to Sloan Kettering. As soon as we arrived to the 9th floor it was party central. They were having a parade for Marti Gras. Ronan loved watching all the action. We spent the next 4 hours having labs drawn, getting his MIBG scan injection, and had an Echo test done on his heart. It was a very long day but we killed a lot of time by playing in the playroom and doing arts and crafts. As much as this sucks, today I found myself having the time of my life with Ronan. I feel so lucky to be able to spend so much time with him. I cherish every second I have with him so much. As the day was ending, we went to finish our last thing which was the Echo test. An adorable girl named Penny took us back into her room and I laid down on the bed with Ronan so he could rest on top of me while she did her thing. The test is really simple and was done in about 20 minutes. Ronan ended up falling asleep on me so I sat and watched Ronan’s little heart on the screen as it pitter pattered away. Penny kept telling me how beautiful and healthy it looked. As soon as Ronan’s little heart started beating away and we could hear it, I completely lost it. I told Penny I was sorry that I couldn’t stop crying and she smiled sweetly and told me that it was totally o.k. I explained to her that hearing his heart beat like that reminded me of when I first heard his heartbeat on an ultrasound. I will never forget what it felt like to hear his heart for the first time and now this. Who would have thought in a million years that I would be listening to Ronan’s heart on a monitor again due to cancer. So. Freaking. Unfair.

After the Echo test we scooted out of Sloan quickly to go back to our hotel and meet one of Auntie Karen’s best friends for dinner. We met Krista at Serendipity and it was such a treat. I’ve heard about her forever and it was so lovely to finally meet her. We had a nice dinner and Ronan and I shared the to die for Frozen Hot Chocolate. He was beyond tired from his day and ended up falling asleep in my lap. Krista and I had a chance to finally get to know each other and I can see why Auntie Karen loves her so much. She was a delight:) Just as we were leaving, Ronan woke up not a happy camper. We were going to take him to Dylan’s Candy Shop, but I decided that we’d better just head back to our room. Krista got us a cab and sent us on our way. We came back here and  talked to Woody, Liam, and Quinn via Face Time on our Macs. Ronan got a big kick out of that. The rest of the night was spent just hanging out and playing. Ronan finally fell asleep a while ago and he has no idea what we have in store for tomorrow. I have yet to tell him that he has to get his MIBG scan. UGH. He is going to be beyond mad that, 1) he has to get his sleepy medicine and 2) that Dr. Maze is not the one giving it to him. I did not want to tell him any of this today because I know he will sit and obsess over it. I’m not telling him anything until right before we go back so they can put him under. I am nervous for this MIBG scan even though we just had one not too long ago. Ronan has been complaining of his right arm hurting for a few days now. I had one of the doctors look at it today and we cannot see any bruising or swelling. So, of course my mind goes to the worst place possible which is something I’m not going to even say out loud. We will know by tomorrow if anything new is going on. I am sick to my stomach tonight. Ronan has also been complaining of his right leg hurting and I have pretty much been carrying him everywhere. I noticed him limping tonight. This has been going on for a while now and has been something we have just been watching closely. As I said before, if anything is going on, we will know by tomorrow. Pray that it is not. I’m thinking positive and just keep telling myself it is his bone marrow healing or growing pains. Please let it be one of those things.

As of now, our plan is to stay here until Thursday or Friday. We will then return around March 20th and that will begin our 5 week long stay. Woody will be coming out with me during that time for a while, thank god. It is really hard to be here without him. He is such a big help to me when he is here. We both really miss him this trip. It’s hard to be a single mom, in a different city, when your kid has cancer. It’s hard but I am strong and know I can do it. New York is going to be the best adventure yet.

That’s all for tonight. Sleepiness is starting to kick in. Let’s just hope it lasts. I am tired of waking up every night at 3 a.m. and not being able to go back to sleep. I call it the witching hour around here. G’night, sweet dreams, and lots of prayers for our Ro baby tomorrow. Love to you all!

xoxo

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

Hello Insomnia and Nightmares

 

 

Awake. Lovely. Fell asleep for about an hour. Woke up due to horrific nightmares. Not going back to sleep anytime soon. I talked via text messaging to Ashley’s mom today; the little girl who underwent surgery. It went very well and she is now recovering over in the ICU. Her mom told me to prepare myself. Fuck. How do you prepare for something like that. I sent Woody the text message she sent me about what to expect. His response? “Fuck.” Great. My rock who is usually my positive power, knows what we are about to go through is going to be hell. I am trying to mentally prepare myself…. but I don’t even know if this is possible. She did tell me that she is completely in love with Dr. La Quaglia though:) That makes me feel a little better. Cheers to Ashley and her successful surgery. So very happy for her and her family.

Today, we spent the day all together as a family. Liam and Quinn leave tomorrow and I am devastated. Ronan is going to be so sad; those boys are his life. We tried to soak up being together as much as possible and had a great day. Lots of laughing and throwing snowballs:) Tonight, Woody and Quinn ran out to get some dinner down the street a few blocks. Ronan was so upset after they left because he wanted to go with them. He screamed and cried the entire time they were gone which was about 20 minutes. I was dealing with him and I looked over to see the tears pouring out of Liam’s eyes. I immediately left Ronan to his temper tantrum to tend to Liam. I sat and held him and asked him what was wrong. He told me how much seeing Ronan scream and cry, bothers him. I wanted to die right then and there. Of course it all makes perfect sense. Liam has been spending a lot of time with Mimi and Papa on this trip because they are his safety, his security. With them, there is no chaos, no unexpected, no scariness. Liam lives for calmness, structure, and rules. With Ronan, you never know what you are going to get and every second is different from the next. Liam does not like this at all and seeing him tonight all I wanted to do was to take him home, and just be able to put him back in his secure environment where all this madness does not exist. I held him for a long time, let him cry, and just explained to him why Ronan was acting this way. Ronan got so mad that I was tending to Liam that he shut himself in the closet. I let him; Liam needed me. As soon as Woody and Quinn returned, we ate dinner and then he took the twins upstairs to watch football. I curled up with Ronan and fell asleep; for a little while anyway.

So, it is officially New Years Eve. I am so ready for 2010 to be over. Worst year of my life. 2011 is going to be much better; I have a great feeling about it.

My friend, Sandy, sent this to me today. It made me smile and I agree with almost everything on this list. Thanks, ho;)

Written by Regina Brett, 90 years old, of the Plain Dealer, Cleveland , Ohio :

To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I’ve ever written.  My odometer rolled over to 90 in August, so here is the column once more:

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won’t take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in it.

15. Everything can change in the blink of an eye. But don’t worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn’t useful, beautiful or joyful.

18. Whatever doesn’t kill you really does make you stronger.

19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie.  Don’t save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words ‘In five years, will this matter?’

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don’t take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn’t do.

35. Don’t audit life. Show up and make the most of it now.

36. Growing old beats the alternative — dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come…

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn’t tied with a bow, but it’s still a gift.”

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz