Sparkly Toes, Fingers, and Eyes…..

Ronan. I gave in after trying everything to go to sleep last night, and popped my old friend, Ambien. AKA-the Devil. I couldn’t take it anymore. My skin was crawling, my head was screaming, and I was tossing and turning. I had all I could take. 2o minutes after taking that evil little pill and I was out cold. Until 7:30 this morning. I woke up,wishing I had not, and praying to a God that I don’t even think exists, to let me go back to sleep for the next 5 years. Somebody, please put me out of my misery. I ask for this everyday, but nobody is listening. I had no choice, but to get ready for the day ahead.

I dropped your brothers off at school and headed to Starbucks to pick up some Coffee and a treat for Mia. I had told Sandra, the night before that I would come down to PCH to keep her company. I parked in our parking garage, and sat in my car for a while. I gave myself a big pep talk and headed into the Clinic where we used to spend so much time. I was o.k., walking in. I found Sandra and Mia; who was in so much pain. Fucking Cancer. I have not seen Mia in such a long time. Sandra brought her in today because the little button, that she has inserted in her stomach to administer all of her medication, is a bloody mess. Obviously, something is not right and Sandra was at her whit’s end. I went back with them to a treatment room. I saw Dr. Eshun who gave me a big hug and smile. He is such a good man. I sat with Sandra, and helped her as best as I could. It actually felt good to be of some use to someone today. This is how I know I am meant to spend the rest of my life, with little people like Mia. I felt at home, being back in that clinic today. I sat and watched as Mia cried out in pain and rubbed the outside of her “button,” which looks so raw and painful. I did my best to distract her with my laptop and a cartoon on my computer. My battery died as I didn’t charge it the night before. Note to self: do not show up at  a hospital with a dead iPad and Computer battery. Total fail.

Mia was seen by one of her nurses who sent over to the surgery area and to wait and see one of the doctors. I brought my “Happy Birthday,” nail polish along and sat in the waiting room and painted Mia’s toenails. She loved it and it made me happy as I thought of you the entire time I painted her little piggies. I sent our Mr. Sparkly Eyes a picture of Mia’s toes, just for you, and told him they were almost as sparkly as his eyes:) You so loved showing off your sparkly toes to him, Ro. You would have loved Mia’s today. I wear this color a lot; just for you.

After being in the surgery waiting area for about 2 hours, Sandra was finally told that Mia probably has an Ulser, which is what is causing the pain and bloody discharge. The doctor gave her a couple of options and she decided to take Mia home and start her on some new Antibiotics that they prescribed to help with the pain. They will take care of getting a scope into Mia’s tummy next week to make sure this is what the problem is. I let Sandra check out and pushed Mia’s stroller outside to the elevators. I kissed her little toes and rubbed her little bald head as she looked at me and told me how much she was hurting. I just told her how sorry I was and how I wished I could take away her pain. I vowed once again, not to stop this crusade until changes are made and awareness starts happening. I swore as I looked at Mia’s beat down, little body, that I will help her mama fight for her, as hard as I can.

After Sandra and Mia left, I ran inside the hospital to see our friend, Super Nate. I had yet to meet him and I had talked to his mama, Beth earlier in the week, so I knew they were there. She asked if she could come down to the cafeteria to see me or if I wanted to come up to meet Nate. I told her I thought I would be fine coming up. I did and walked into the new hospital, up to the 7th floor. I hadn’t been on the new floor yet. The new hospital is so big. The rooms are very nice, but the home sweet home feeling of the old hospital, seems to have been lost. I found Nate and his Mama in their room and Nate was watching T.V. He is so beautiful, Ro. You two would have been great friends. I chatted with his mama for a few minutes, asked Nate a couple of questions, and told him I would come back to visit him with and would be sure to bring him some new Star Wars guys. I told him about your buddy, Captain Rex. I will make sure he gets to know him for you.

As I headed down the elevator, I thought to myself, that I did an o.k. job…. that I was capable of handing all that I had made myself do today. Just as I was walking down the hall, it was as if I was sent back into a time warp. I found myself standing in that exact same spot, by the cafeteria, where I chased you down the hall and you told me you loved me to the moon and back. I pictured your bald head, your little Star Wars pajamas and I felt like I had the wind knocked out of me. The tears were pouring, I felt like fainting but I somehow managed to throw my sunglasses on and almost sprint out of there today. I wanted nothing more but to turn a corner and find you there, hiding from me. To hear you saying, ” I Love you, Mama. You’re my best friend.” I can’t believe I’ll never hear those words from you again, Ro.

I spent the night hanging with your Daddy and brothers. It was a low-key night and your Daddy walked down to Uncle Jay’s for a while to hang out with his friends. I spent the night cuddled in bed with both of your brothers. I took an Ambien to sleep. Yup. I had no choice. I had to get up early this morning to meet Samya for a run on the canal, Ro, and I had to get some decent sleep. I did, too. A solid 7 hours. I bounced out of bed at 6 a.m. and headed over to Taylor’s to meet Samya for our 6 mile run. It was good. I got rid of the mental block in my head as you know how much I hate that stupid Canal. Dusty, ugly, dirty, smelly, and bugs everywhere. I did my best to pretend as if I was running back in NYC….. God, how I miss that city. 6 miles went by in a blur there. The 6 miles today, was o.k. It felt good to be up and out running with my new friend. She is going to be a great motivator; but my heart just felt lost without you. I thought back to the time I pushed you for 13 miles on the Canal, with Marisa, in the jogging stroller. I remember how happy I was to have you with me. How much I loved to push you as I ran. You were so content to just sit there, as long as you were with me. You were my Yin and I was your Yang. Nothing else mattered.

I’m back home now. Everyone is sound asleep. Liam and Quinn have a basketball game this afternoon. I will take you with me to watch. I take you everywhere I go; just in a different way now. Ronan. So many kids are losing their battles with Cancer, everyday. I’m sure it’s always been like this, but now that I’m aware of it, it seems as if everything I read says, “So and so lost their battle with Cancer today. He or She earned their angel wings. Fly baby, fly.” I fucking HATE those words. Angel Wings? Give me a fucking break. This may bring some people peace, but it does the opposite for me. It just pisses me off. No child should have to be wearing angel wings unless it comes in the form of being alive and running around with pretend wings on and a magic wand. Angel Wings my ass. I guess the thought of this gives some people comfort, but it’s not for me. I’d rather think of you still here, close by me…. not far away, flying around. I don’t want to think of you as an angel… I’d rather still think of you as my Little Devil.

It’s late now and the day is gone. The day was spent hanging out. I went to The Village, to watch your brothers play in their basketball game. You would have been so proud. They played their hearts out and won their game. It was so fun to watch them play with such fire. I thought of you and how you would have yelled and cheered for them. How you would have went and sat on the sidelines next to them, instead of next to me. You always loved to be right in the middle of everything those two did. I felt sad today, sitting there watching something so happy. I put on another good show today and hid my tears from everyone. Your brothers saw nothing from me but my smile and the proud look in my eyes. Fake it till You Make it!! Everyday of this life so far without you. The days I don’t feel like faking it, I just hide in bed for most of the day and put together my master plans. I love those days the most. When I’m alone, the house is quiet but I have 50 busy projects going on. I love when Fernanda comes to try to kidnap me but she gives in and just stays in bed with me. You’d be surprised how much we could accomplished with our coffee meetings in bed. I think movie watching should be mandatory as well. Lots of coffee, Coke, and Junkfood can inspire amazing things. I think I would like to hold all “business meetings,” in my bed. Pajamas required. I could be content to never leave this house again. The sunshine is just too goddamn bright out there. I’m so over this sun. I told my friends on FB today, that I have decided to move to Forks, Washington and in with Edward Cullen. I could totally do the vampire life in dark and dreary Washington. Makes me homesick. I hate waking up everyday to “HELLLLLOOOO CHEERY SUNSHINE!!!!!!!!!!” Shut up. There is nothing to be cheery about out there. Bring on the dark, gloomy, cold, rain. Fits my mood to a tee.

Is life always going to hurt this much, Ro? Is anything ever going to feel good again?  I’ve survived another weekend and I’m exhausted from a weekend of pretend happiness. Pretend normalness. Normal things around the house. “Oh look, the Raiders beat the Jets!” “Come to dinner with us, Mom!” “Do you want to get Ice Cream, too?” I muster up the energy to tackle these normal things, but all I want to do is baracade myself in your bedroom and go to sleep for the rest of my life. Happiness is all around. Laugher is everywhere.  It should feel good to me, right? It doesn’t. It’s exhausting and I want a break. I would like to selfishly leave this life of mine behind, and disappear for a while. That’s right. I said it. And I get it. I get that I have sooooooo much to live for. I have soooooo many people who love me. But does that make any of this any better? No. It doesn’t change the fact that you are gone. And all I want is to be gone too. I’m sorry, Ro. I guess I’ve had a bad week. I really wish there was a magic wand that would make me feel better because I’m getting tired of feeling this way. Hopefully this week will be o.k. I’ve got a busy enough week ahead of me full of trying to find my way through this fog.

Or maybe I need to say peace out to AZ and go find some real fog somewhere that will allow me to truly get lost. All I want to do is to get lost. All everybody else wants me to do is to find myself. Here’s a little secret, peeps. You are never going to find me, because I am DEAD. The former Maya, does not exist anymore. When you died, Ronan. You basically took me with you. It was the only way for us to stay together. So now, my soul belongs to you. Someday, I hope to be reborn. But I will never be the same girl I was before all of this. Who knows, maybe I’ll be even better. If Ronan has something to do with this, I know I will be. But stop with the pushing. It’s not happening unless it happens on my own. This is why I have been renamed Maya Inca Thompson. My alter ego, badass name. Inca Forever! Thanks Travis Tinney. You are awesome.

I should probably go now, baby boy. I’m too full of piss and vinagar tonight to continue to write. I miss you so much that I don’t know how much more of this life I can take without you. Come and get me, please. I know you can…. so just come and do it. I can’t take being without you any longer. I can’t take not being able to tuck you in at night or kiss your sweet little lips. I miss you, Ro. I hope you are safe. Sweet dreams, my little Devil.

xoxo

Because this kid is truly awesome

No sunlight…. anymore

 

 

 

Ronan. Where are you? Why did you have to leave? I am missing you so much. We are home. Back to our house that is now so empty without you. Back to our life which seems so forced. Everything is lost. I’ve been going through the motions, doing all responsible things that comes with being a mommy and wife. I’ve been keeping busy with unpacking, organizing, answering phone calls,  running errands, playing with your brothers, trying to do all the normal things that are normal but do not feel that way at all. I went to the grocery store today. Quinn went with me. I haven’t been to our store since the last time I took you. You were so sick and you sat in the cart with your little hat on. You fought me on leaving because you wanted me to buy you a new toy. I couldn’t say no. I remember being so worried about taking you to the grocery store as I was exposing you to germs. I remember how I careful I was to make sure I disinfected your hands as I was so grateful to just have you with me, out and about. I swear I could hear you little voice in that store today. I was doing o.k. until I was at the Deli Counter. I remembered waiting in that exact same spot with you a few months ago. It was there that the tears started and I tried to fight them back as the girl behind the counter took my order. It didn’t work. I cried the rest of the time as everything in the grocery store, reminded me of you. Quinn noticed of course. As I was getting the milk I heard him go, “Are you o.k, mom?” I smiled and lied to his face and  told him I was. I was not. I somehow managed to pull it together as it took everything I had not to abandon our cart and run out of that place today. I now loathe the grocery store. I used to love everything about it, but now everything in there just makes me sad and nervous. It all seems so overwhelming. I wanted so badly to be pushing you in that stupid, germy, little car grocery store cart that used to make me cringe. I wanted so badly to be that mom that would have been worried about you catching a cold from all the germs on that dirty thing. I’ll never get to be that mom with you again. I cannot believe you are really not here. I can’t believe I’ll never get to take you to the grocery store again with me. I can’t believe I’ll never get to chase you up and down the aisles because you refused to sit in the cart. My entire life, I’ve never really known what true pain feels like but now, I feel like it’s the only thing I’ve ever felt before in my life. My world, without you, is painful every second of the day. Even while I sleep. I wake up sad, spend my days sad, go to sleep sad. I’m trying but I cannot escape the pain I feel, no matter how amazing your daddy is being, how beautiful your brothers are….. nothing can take away my sadness.

Yesterday, somebody asked me how many kids I had. I was out, trying to do some normal things. A girl was trying to make small talk with me. She asked if I was a teacher and I told her that I was just a mom. She asked how many kids I had. I told her I had twin boys that were 8, and I had another son who was almost four, that just passed away. I could hardly choke out the words and I just sat cried as I tried to tell her a little bit about you. I guess I wasn’t prepared for that question, or the emotions it was going to flood me with. I tried so hard to be strong and be so thankful for  the time that I got to have while you were here. All I could do was sob. I came home and cried some more. Every time I’m out, I cry. I feel like a walking waterfall. I have been going into your room a lot. I like to lay on your bed and cry there, snuggled up with all of your stuffed animals. Your sock monkeys, your Master Yoda‘s, your Julius.

Quinn usually follows right behind me. Last night when I was crying on your bed, he read me a story. He is still not wanting to leave my side. He helped me with all of the laundry tonight, he sat outside with me while we watched the monsoons, and now, he is laying right by me playing on his iPad. Oh Ro. He misses you so much. You two were joined at the hip. I watch him when he doesn’t think I am and I can see him looking for you, wanting to play with you, wanting to wrestle you, and I feel like he expects to walk into your room and see you there. Liam on the other hand is so independent. He has been spending a lot of time outside, playing on his rocks, talking to himself, playing in your room, with your toys, like you are still here playing with him. I am able to go into your room now. After I came home the first time, alone, and spent a lot of time in there….. I can do it now. I spend a lot of time crying on your bed. Your room is still my favorite room in our house. It always has been. Even before you got sick. I find if I need to breakdown, your room is the place I like to go. I feel safe in there. I want to keep it just the way it is for a long time. I like to sit in there and talk to you and remember all of the fun times we had in that room. Your daddy likes to sit in there and play his guitar and sing to you. We will not be changing it anytime soon. It needs to stay that way until we all feel like we are ready to change it.

I don’t have my week planned out. I have some plans tomorrow, some things that need to get done with your brothers, but I cannot plan anything out for as far as what the rest of our week will look like. That’s too much for me. I am just hoping to get a lot of things done, one day at a time. I cannot bear to think what a Tuesday, Wednesday, Thursday, or Friday will look like yet. I am such a planner, so this is hard for me. But I also know the feeling of being totally overwhelmed and I never know if I am even going to be able to get out of bed in the mornings to get my shit done. One day at a time works for me, as of now. I can’t ask too much more of myself at this point. I told you I was starting Boot Camp tomorrow, Ro. Remember when I would have to put you in bed with Daddy so I could sneak out at 5 a.m. to go? I was always so worried you would wake up and be so upset I was gone. Sometimes I would come home and you’d still be asleep. Most mornings, you would be cuddled up with your daddy, watching cartoons, waiting for me. It’s going to be so strange to walk out of this house tomorrow morning, without having to worry about you staying asleep. I told you if I don’t go to boot camp, I’m afraid I won’t wake up in the mornings. Today, everybody in our house, slept in until 11 a.m. That is MADNESS! I haven’t done that since college! It felt weird and it made me so depressed. We were all so used to you waking us up in the mornings, demanding your eggies and Mickey Mouse Clubhouse. With just the 4 of us, nothing is complicated, your brothers are so easy, such good helpers, such hard workers,….. we are all missing the spice in our life that came in the form of you. Life without you is depressing, Ronan. Dull. Stupid. Boring. Sad. You were everything to all 4 of us. EVERYTHING. Now we are back to square one. Back to routines, homework, school, family dinners, but you’re not here. You’re not here to help me cook, you’re not here to make messes for me to clean up. It’s just me while your brothers are at school. I don’t get to hear you screaming for “Guy’s Helmets!” because you wanted the correct Star Wars Helmets on the correct guys. I don’t get to tell you that you are driving me crazy because you are taking off all of your guys’ heads and they are all unorganized. We not longer get to have helmet hunting parties. What am I going to do without you????????

I cannot even think about this right now. I’m bawling and I have to get to sleep so I can get my ass out of bed and be productive. Come with me to boot camp in the morning, Ro. I’m sure Tammy would be fine with it now:) I love you little man. I love you to the moon and back. I hope you are safe. Sweet dreams, baby boy.

xoxo

 

Just you and me

Ronan. Just another day without you. I wish I could tell you that I am o.k. But, I’m not. I’m just sad. I’m swimming in a sea of sadness and am barely staying afloat. This morning, I took your brothers to surf camp. I sat and watched them for the 3 hours and pushed them as they both complained about the ocean being too cold, etc….. I was the mean mommy that told them to suck it up. My tolerance for their complaining today was at an all time low. At one point, Quinn came in and didn’t want to go back into the ocean. He wanted to stop surfing for the day. I brought up you and how hard you fought for every second of your life. I talked to him about life and how important it is to not give up and to keep fighting. I told him how you would give anything to be living still and if you were having a hard time at something, that you would have never have given up. But life is not fair and now you don’t get to run around, never taking no for an answer, all while pushing every limit, every boundary that came your way. You were just born different from most people, Ronan. Your daddy and I say it all the time. You had a fire and such strength in your soul. That’s  why we were so convinced that you would beat your stupid fucking cancer. I’ve never met a boy stronger than you and I still can’t believe that everything ended so quickly.

After my “get your ass back into the water,” pep talk….. but in a much nicer way, Quinn finished up his class. I don’t know if I’m pushing too hard, but that’s just the way it goes. Your brothers need to learn a little something about fighting to become the best people they can be. To appreciate everything that they are able to do. To never take a second of life for granted. I have no tolerance for whining and complaining anymore. I know what it’s like to watch a little boy go through treatments for cancer and how you never once complained about anything. Except for missing your brothers and just wanting to be home. Complaining about things in our life now just won’t exist anymore, unless it has to do with missing you. That’s the only thing any of us should every complain about. Anything else can be fixed, problem solved, or worked through.

After the boys’ surf lesson, we hit up the hot tub and than came up for lunch. Liam crashed out for a nap, Quinn rested as well and I took my surfboard and headed out for a couple of hours. It was cold, but I welcomed the angry ocean with open arms today. It felt good to be out there and I got tossed around a bit. Coronado is a great place to learn how to surf and the quiet time out in the ocean, when I paddled past the waves to think about you, was nice. After I surfed, I came back up to the condo and hung out with your daddy and brothers. Later in the evening, we went out to our usual spot so your daddy could cook up our dinner. There were a bunch of dolphins out in the water this evening. We spotted about 5 or 6. They were so beautiful and I of  course thought of you. I was than overcome with anger and thought to myself that it was bullshit that a sign from you, had to come in the form of a dolphin. I don’t want any signs…. I just want you. Back with us, the way things should be. I tried to be happy about seeing those dolphins tonight, but it only made me sad and miss you more. You did leave me a lot of signs today, which I am thankful for. I don’t mean to sound ungrateful, Ro. I love all your little signs, but it doesn’t make me miss you any less. Sometimes it hurts more.

After dinner, we came back up to the condo and although it was late…. 9:30, I headed out for my run. (sorry Mr. Sparky Eyes) I promised him I wouldn’t run late at night anymore, due to an encounter I had with some creepy man a few nights ago; but I had to go tonight. It’s the restlessness in me that never goes away. I ran 7 miles…. all the way over to the Coronado Bridge and back. It felt good, it hurt, and I of course thought about you a lot. Sometimes, when I am thinking about you, it hurts so bad that I cannot even cry. I was thinking about being at The Ryan House with you and I felt like I was going to stop breathing as I still can’t come to the realization that you are gone. I think I have Post-traumatic stress disorder. For real.

Post-traumatic stress disorder

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.

Causes, incidence, and risk factors

Post-traumatic stress disorder (PTSD) may occur soon after a major trauma, or it can be delayed for more than 6 months after the event. When it occurs soon after the trauma, it usually gets better after 3 months. However, some people have a longer-term form of PTSD, which can last for many years.

PTSD can occur at any age and can follow a natural disaster such as a flood or fire, or events such as war, a prison stay, assault, domestic abuse, or rape. The terrorist attacks of September 11, 2001, in the United States may have caused PTSD in some people who were involved, in people who saw the disaster, and in people who lost relatives and friends. These kinds of events can produce stress in anyone, but not everyone develops PTSD.

The cause of PTSD is unknown, but psychological, genetic, physical, and social factors are involved. PTSD changes the body’s response to stress. It affects the stress hormones and chemicals that carry information between the nerves (neurotransmitters). Having been exposed to trauma in the past may increase the risk of PTSD.

Having good social support helps to protect against PTSD. In studies of Vietnam veterans, those with strong support systems were less likely to get PTSD than those without social support.

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical ofanxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • PalenessYup. That pretty much sums me up. Except for the paleness, but that is only due to the sunny Cali weather:)

I thought about the lecture I was going to get from Mr. Sparkly Eyes about running so late at night and thought about how I would tell him that I was sorry; but fear is a word that doesn’t exist in my vocabulary anymore. I have already lived through the thing I was most scared of in my life. So now what? What else do I have to fear? Nothing. Of course, I worry about your brothers and Daddy, but when it comes to me… I just don’t give a fuck. I’m not going to live my life being scared of anything anymore because I know whatever else is thrown my way, will be nothing compared to losing you. So , I will run my runs when I want, say the things I feel, swim in the ocean at night, and not be scared. It’s actually very freeing and liberating. To live a life of not being scared of things is how all people should live, otherwise what’s the point? Before all of this, I don’t know if I would have ever taken up surfing, because I was scared of sharks. And forget about running the dark. I used to make up things in my head to be scared of. Well, I’m done with that. At 33 years old, after losing you, I’m done with fear. I’m going to live my life the way you would have lived yours. Head on, embracing every adventure and pushing the limits for the most beautiful outcomes. I will live my life this way for you, because I know as an adult, this is the way you would have grown up to be. Life would have been scared of you.

I came home to your daddy and brothers watching a movie and soon Quinn was ready for bed. We came into our room and as soon as we turned on the T.V. guess what was on, Ro. “Zombieland.” One of our very favorite movies that we used to watch all the time. That’s where you got the saying, “Just you and me,” from. Another one of your little signs. That was one of our favorite things to do in the hospital was watch that movie on your iPad. Quinn watched it for the first time tonight and laughed a lot. It’s a little mature for him, but he has had so much of his innocence taken away that I let him watch it anyway. We cuddled up and watched it together. I held him extra tight for you.

We say goodnight to you every night. Do you hear us?? I hope you do. I’m going to say goodnight now baby. We have an early camp tomorrow again, hoping those brothers will pick up a little more passion and zest for the opportunities that they are given. I just want them to be thankful for being on this earth everyday, with 2 parents who are so broken, but are somehow managing to make this summer as good as it can possibly be. It’s a lot of work, but as a family, we have to do this. For all of us. I know it is what you would want.

I love you little man. I love you to the moon and back. As I was running tonight, I stopped and blew a kiss up to the moon and said, “I love you, Ronan.” I hope you heard me. Life is so precious and I know it doesn’t’ seem like it now, but I am not going to let it swallow me whole. I promise I will start living it again when I am ready. But ready is not now, and I don’t know when it will ever be. I need more time to pass between your death. I still cry all the time, but mostly over being with you that final night and saying goodbye to you. I still tell myself it just can’t be true. You were true and all I wanted was you. Forever. What am I supposed to do without you my little bug?? As of now, I don’t want to do anything except survive and not totally fuck up your brothers with the crazy shit that goes though my head. All I can do is be present for them and do the little things for them that I know mean so much. I will deal with them first, and myself later. I can wait. The damage done to them cannot be undone, which is why when we get back to AZ, therapy will become a big part of our lives. I have to be proactive about this and it is something we are going to have to do as a family, together.

I also forgot to tell you a funny story from last night. I took Quinn to dinner, on a date. We had finished up and we were walking out of the restaurant and there was a family of 5 sitting on the bench and standing up, smoking. I was holding on to Quinn’s had and I looked at them, straight in the eyes, and said, “Smoking causes cancer,” and kept walking. I thought Quinn was going to fall over. It’s like I have no censor anymore and he wanted to know if we were going to get into trouble for saying that. I said for what, “For speaking the truth? Ronan got cancer because he didn’t have a choice.” The fact that people in this day and age, take it upon themselves to smoke, knowing what the risks are, pisses me off. I’m sensitive to this, especially now. I wanted to say, “You should get cancer, not my 4-year-old child who didn’t do a thing wrong in this world.” You make the choice to suck on those freaking cancer sticks, then suffer the consequences. My child had to suffer for not a god damn reason at all except for bad luck. If anyone deserved to live, it was you baby. I will never stop thinking that. This whole things turned out so unbelievably wrong. For everyone involved. Everyone misses you Ronan. Even though you are gone, you are still changing lives. I promise you, a cure for this will be found before I die. I know I made you a lot of promises, but I promise to keep this one. I owe it to you and all the other little babies out there. Give me some time. Some time to mourn you, but when I feel ready….watch out cancer world. You’ve fucked with the wrong mommy and baby team. You are going to be sorry, but it will never be sorry enough for having to lose you over Ro. I will be sorry about that everyday for the rest of my life. Your fire now burns in my soul, you live with me, in my body. I know you may go away now and again, but when you want to come home, I know this is where your soul rests. I feel you all the time.

This is all for tonight my little monkey man. I love you to the moon and back a million times over. Just you and me, baby:) Sweet dreams. Go and visit some of your favorite people. Nighty Night baby boy.

xoxo

“Take away a man’s son. You’ve truly given him nothing left to lose.” Quote from Zombieland

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

A small glimpse of the amazingness of Fernanda

This is her latest email to try to get Oprah‘s attention. Can you see why I am in LOVE with this woman?? She is amazingly smart and witty. Love this email; it cracked me up and is so to the point and true. How can these people not listen??

WHY OPRAH AND STEVE JOBS SHOULD GO OUT ON A DATE

Dear Gayle, I am writing to you because I think you should set up Oprah and Steve Jobs on a date. And only BFF’s can make that happen. My name is Fernanda Borletti, mom of 5, all under 7. My life is easy and blessed. But my dear friend Maya’s life is not. Her beautiful 3-year-old son, Ronan, was diagnosed with Stage IV Neuroblastoma in August 2010. Since then she and Woody have fought the toughest battle of their life, and portrayed it beautifully in her blog: www.rockstarronan.com. All you have to do is spend 5 minutes reading it to feel that something has got to be done.

Which brings me back to Oprah and Steve getting together. I go to bed at night thinking of all the things they could do. Shine a light on childhood cancer by doing a show, honoring the courage of mothers fighting for their children, getting iPads for all the kids going into Bone Marrow Transplants, and forced to spend weeks in isolation. I mean the options are endless. And I know they would do it.

This morning I decided that all I want is for them to go out on a date  and let them, together, do what what they are know for best: just surprise us.

Can you help me?

With much admiration and gratitude,

Fernanda Borletti

Because no baby should have go through this….. There are no words for this picture and how I felt on this day.

MIBG Day is here!

I wrote the longest post last night, only to have it magically disappear. I am so annoyed and was too tired to write anything over again. I’ll keep it short and sweet this morning as we have a busy day ahead of us. Today is the day of the MIBG scan. The scan where we will be able to pinpoint exactly where Ronan’s cancer is still active. The scan that will light up his little body down to every active cancer cell. We are praying for a miracle and hoping the scan comes back showing a lot less activity. I know it is too much to ask for it to all be gone, but I’m asking anyway. Please keep Ronan in your thoughts and prayers today. I will update you all as soon as we know something. It may be awhile, as the team of doctors want to go over all of the scans combined. I am still going to get the MIBG read for me today. Dr. Eshun is pretty good about getting back to us as soon as he knows anything. So, here we go today…. at least it is Ro’s last anesthesia for a while.

Yesterday the event at Los Palomas turned out beautifully. It was sold out and the room was filled with the most gorgeous women in the valley:) I had Tricia represent me, as I couldn’t be there due to being at PCH all day. She got up in front of everyone and read a little something I had written. I am so proud and honored that she was the one standing up there for me. Thank you, TT. You are the most amazing best friend to me. Thank you to Jaye and her wonderful board members for dedicating your entire day to raise awareness for Ronan. It means so much to our family.

After we returned home from the hospital, we had a great day playing outside and around the house. Ronan is feeling so great and it is days like yesterday that keep me going. Yesterday, I watched my baby play and act just like a normal 3-year-old who doesn’t have cancer. He was acting like his old self and was so happy and sweet. Days like yesterday don’t happen very often anymore but when they do, they mean so much to me.

I’ve got to get my little guy ready for the day. Thank you all for the love and prayers. I hope you all have a beautiful day!!

P.S. New York Miss Macy!!! I will be thinking of you during your travels today for your big move to San Fran! You will always be New York Miss Macy to me though. I can’t wait for your visit and I can’t wait to wear our Spirit Hoods together you crazy girl!!! I love you!!!

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

There’s no place like home

The morning started off early and Stacy offered to bring me coffee; which I really needed. She then ever so sweetly offered to stay with Ro so I could run home and shower. So thankful for her because just being able to go home and shower makes such a difference in my day. Ronan was so great with her and he is now getting used to my friends who are coming in and out to help me. His ANC counts have come up to 56…. slowly they are jumping up. Hoping for better counts tomorrow. He has been a little grumpy today but I finally got him out of his room and into the playroom for about a half an hour. That seemed to help his spirits even though he was insisting that he wanted to go back to his room. I told him that we were getting out of that stinky room for awhile and going to do something fun. We ended up painting and picking out some Mickey Mouse movies to bring back to his room. We have been playing on one of my friends’ iPad as it has a ton of games on it that we’ve never played before. She dropped it off at my house this a.m. and it has been keeping us busy for a couple of hours now. Thanks, darling:) Ronan and I also disinfected his entire side of his room tonight. My skin was crawling thinking about the germs everywhere… we tided up his entire room and wiped down everything from his Star Wars guys to the freaking floor. GROSS. Do not get me started on the cleanliness of hospitals. It freaks me out. I have taken it upon myself to wipe everything down, everyday. Makes me feel better in a way. Weird and silly but it’s a feeling of control that I need right now.

Liam and Quinn’s 1st grade teacher called me yesterday and offered to sit with Ronan tonight so I could run home and see Woody, Liam and Quinn. BEST TEACHER EVER:) Thank you, Cindy<3 She is on her way now and I cannot wait to get home to my big boys for a couple of hours. I may stay the night at home tonight and let Woody stay at the hospital. It would be so nice to spend a little time with Liam and Quinny Q.

Home sweet home now. Got to see Woody and catch up on some things. It was beyond nice to spend an hour with him before he went to PCH to spend the night with Ronan. It feels so good to be home and so good to be with Liam and Quinn. I miss them so much. We spent the night playing “Little Big Planet,” and they both helped me with chores around the house. They are the sweetest boys’ in the world. I can’t believe how tall they have gotten! I swear they have grown a few inches since I’ve seen them last! Quinn has sprouted up and is a couple inches taller than Liam now. Woody said tonight he bets Quinn is going to be 6’8 or 6’9. My 7 year olds are going to be taller than me soon. So scary! The boys’ had 2 basketball games today and sign ups for baseball. We are trying to keep them as active as possible and everything as normal as possible for them still. From what Woody said, they both did amazing at their games today. They were both very excited to tell me about them. I loved hearing the excitement in their voices; my little superstars. Team Thompson rules;) I am so proud of them.

Time to try to get some shut eye now, I’ve got to be back to PCH early so Woody can go into the office for a few hours and get caught up on some work. Hope you all are having a beautiful weekend. Sweet dreams<3

xoxo