Tag: Captain Rex

19 months and I hate cancer

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Ronan. I woke up today, not knowing the date. Then I got the little reminder of my phone that simply says, “Ronan. I miss you.” It comes up the 9th of every month because sometimes my scattered mind forgets what day of the week it even is. I didn’t have a danger day, like I used to on the 9th of every month. I miss those. I’m far too pregnant and tired to do anything dangerous so my danger days have been put on hold. I did finally get my manicure though. I decided today I would get a Captain Rex manicure just for you. So I had my fingers painted blue and silver, just like your favorite Star Wars guy. I missed you a lot today, but that is true of every day since you left here. I still cannot believe it’s been 19 months.

I did a lot of nothing today as I just wanted to make it through the day and I did. I ran some errands, took a nap, cleaned out my closet, got all the laundry done and put away. Very exciting things. I have a busy week and I am hoping goes by fast. I just want to be out of here and off to Washington soon. I need a break from this place and some fresh air. I’m tired of the sun.

Teddy’s mom sent me a text today and told me a hummingbird came to visit Teddy in his window today. I still think of you every time a hummingbird appears. I think you came to visit Teddy today to tell him that you will take good care of him. I so wish it wasn’t this way. For the both of us. I don’t want Teddy’s mom to know what any of this is like. She said Teddy is doing alright. They have him on morphine patches. I had a flashback of you having to wear those. I remember how soon they started doing nothing for your pain because the cancer just started eating away at your little body. I cry about this a lot. I wish I could have felt the pain, instead of you. I still don’t understand how everything got so out of control, so quickly. It was like in the blink of an eye, you were hurting so much. I’m so sorry I couldn’t fix you, Ronan. I’m so sorry for all of this.

I don’t have much more to say tonight. I am far too tired and too sad, to write much more. I know you and Teddy are going to be great friends. I just wish it were down here, on earth with us and not somewhere else. You two don’t belong anywhere else. Fuck you cancer. I hate you. But I love you, Ronan. I love you to the moon and back, forever and always. I hope you are safe. Sweet dreams, my spicy monkey boy.

xoxo

Who is that little boy, standing next to you by the Christmas Tree? Oh, nobody. That’s just a mannequin, wearing my dead child’s costume.

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Ronan. Life is all about choices. I have to make choices every single day. For instance, it is a choice for me to get out of bed every single day and be a functioning member of society. That is a choice I didn’t used to have to make in my life, I was just so excited about the day and what was to come, that I would spring out of bed after mostly being woken up by you. Now getting out of bed every day is harder. But I make the choice to do it. For you, for myself, and for your brothers. I have to think about the way the things I do in my life and what they will do to your brothers as well.  I know having a mom who doesn’t get out of bed, would only hurt them. I’m trying my best not to cause them any extra pain. I am trying, but sometimes I get so tired of all of this. It takes a lot of energy to make these choices that do not come effortlessly to me anymore.

Saturday came. I was o.k. with it because we had a very specific plan for the day. I had to finish up an interview with NPR so a girl named Jude came by our house with the last of her questions. Your daddy did a little interview as well. I think it will be a really good piece and I cannot wait to hear it when it is all finished up. Jude came to PCH with us to get some background noise while we decorated our tree. So it was me, your daddy, Liam, Quinn, Fernanda, Stacy and Melissa who spent a couple of hours, getting your Star Wars Captain Rex tree up and decorated. The entire tree is blue, silver and white. Just like the colors that Captain Rex wore. A lot of the time, I can be really strong doing things like this. Or maybe I’m just still numb. Looking back, I don’t know how I did what I did, with your daddy and brothers there with me. The decorating the tree wasn’t bad. The being in the hospital wasn’t bad. I handled it all pretty well, like I always seem to do. I handled it all well, including when Liam went over to your Captain Rex mannequin and picked him up for a picture. I about lost my shit, but I couldn’t. All Liam wanted was a picture with the little guy. He had no clue that Captain Rex was actually wearing the costume you wore on Halloween. So as he put his arm around Captain Rex, then picked him up while saying, “CHEESE!” I had no choice but to snap the picture. I think I almost threw up. I looked back at Fernanda who had seen the whole thing. She looked as pale as I felt. OMG. OMG. OMG. That did not just happen. This is not my reality even though I know very well that it is. We all got out there soon after that. Your tree looks wonderful. So perfect. So very much you. We took a picture in front of it. The very perfect family holiday card picture, right Ro? Looking back at it now, it breaks my heart. Captain Rex looks like an actual little boy standing next to us. He looks about your size. Have we all gone mad? Who in their right minds, takes a picture like this and holds their shit together? We do, Ronan. To honor you. To bring some smiles to other kids’ faces. Because this is one choice we don’t get to make, we just have to do. For all of us. Because if we don’t do things like this, then we all crumble up and just fall apart like I know I want to do, every second of the day. But the fighter in me just won’t give into the weakness of that. I’ve got too much shit to do in this world.

We had some very good friends come into town for the night. My best friend from Jr. High. Her high school sweetheart and now husband and my good friend, too. I set them up when we were about 15. Some of the best people I know. Woody and I love spending time with them as a couple. Laura and I used to always say you and their daughter Cameron, were going to get married someday as you are so close in age. How naive we were, I guess. They came with their kids in tow. As always, it was so good to be with them. We left the kids for the night and headed out to the Bret Michaels concert. Everyone was so excited, including myself but always in the back of my mind is the reason I get to do things like this and it all revolves around because of losing you. This now means that anything beautiful comes my way still stings in a way, too. I am always very aware of our situation and the reason our life is the way it is now. The situations I find myself in, such as a great night out, with great friends, at a great concert, always come with a heavy price tag. One that I wish I never knew but this is our life now so I try to take these little gifts and grow from them as much as possible. In my life before all of this, I am pretty sure I would have been the life of the party. Laughing with friends. Being wild and free. Not having a care in the world. Now I find myself a little more reserved and quiet. I know I will never be the life of the party again. I would just rather sit back and watch the way others get to play that role now. It’s not mine to play anymore. Our night was lovely and your daddy got to blow off the steam that I know he very much has been needing to do. I found comfort in being with my oldest friends. The friends that knew me before your daddy, before kids, during kids, and after the death of you. We got to spend a little time with Bret before the concert. I had the chance to tell him thank you for all he has done and is continuing to do in this world. He has a great heart and I was so glad to finally be able to tell him thank you in person. The concert was amazing. I had to sit down throughout much of it, due to my feet hurting and just being wiped out. I felt your Poppy kicking a lot. I let myself find some solace in that.

Our friends left today. But not before I went to your room to check on Laura and her kids. They were packing up and I could tell Laura was upset. Her little one’s had been playing with your toys all day. I told her it was alright, that somebody needed to play with them. She just grabbed me and we both cried for a bit. She told me how wrong this all is and how she doesn’t know I do this. I don’t know either. I never will know the answer to that other than the obvious one which involves because if I don’t, I will die. I know that is my ultimate truth.

I need to go now, baby. Quinn is sleeping due to a headache he has had today so I am going to snuggle up to him. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

2 a.m. Insomnia Parties With A Raccoon and A Cat

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Ronan. Everyday normal things will no longer exist in my life again. Not even a trip to the grocery store, the car wash, the bank, etc… Even the littlest things are different. I’ve been keeping myself busy enough because my life depends on it. I could easily see myself sinking into a very depressed state of mind and not getting out of bed until Poppy is born. That is why it is so important to me to have most of my days, planned out. I no longer love the luxury of not having things to do. Because if I don’t have things to do, I just won’t do anything at all and that is not a good place for me to be.

 I went to see my OBGYN a couple of days ago, just for my 4 week standard check-up. As I said before, everything with your Poppy sister looks great, but I still sat and told Dr. Schwartz about how I made the ultrasound technician check for any type of mass in Poppy’s body. She sat with me for a good half an hour to discuss how I am doing, how I am feeling, how I am dealing with all of this, and how much I miss you. I know she did not have to do this. She is one of the busiest women on the planet, but I so appreciated her taking the time to talk to me about anything and everything. She told me she would send me back to get more in depth ultrasounds whenever I wanted, she would find any excuse to send me. We have decided my next one will be at 26 weeks. She told me had you had this at birth, it would have been so microscopic that nothing would have shown up. If it would have shown up as something bigger and abnormal, they would have seen it and told me. I don’t know if this made me feel better, but I appreciated her taking the time to talk about the questions I have. She is a great doctor. After I left there, my phone rang. It was Dr. Schwartz telling me that she just got the flu shot in and she was highly recommending that I get one. I told her I wasn’t going to. She told me about the study that just came out linking pregnant women and the flu, to autism. I talked with her a bit about how I really didn’t want to get it. I would rather not put something into my body if I don’t have to. She once again, told me she couldn’t make me, but she felt very strongly about it due to how much I’m in the public and traveling. I asked Stacy and Fernanda about it. They urged me to go. I asked your Mr. Sparkly Eyes. He told me to please go and get it done. Of course I listened. I went today. Remember how I said that nothing will ever be the same again? I cannot even get a flu shot without thinking of you. I’ll never forget all the “pokies,” we had to give you after your rounds of chemo. How much you hated them. How I would hold you and your daddy would give you the shot. Shot after shot after shot. How you would scream and cry and try to be brave, but you hated it so much. My shot didn’t hurt for me today. My shot hurt for you. I’m so sorry for all you had to go through. It was so not fair or right. Any of it.
Do you know what else I’ve gotten to do the past couple of days? I went with Stacy and Fernanda to shop for your Christmas Tree that we are putting up this weekend at PCH. Of course it is a Star Wars theme. We decided this year, to do it all after your favorite guy, Captain Rex. The entire tree is going to be blue and white. Fernanda came up with the brilliant idea to find an actual mannequin and dress him up like Captain Rex to look like he is playing next to the tree. We found a kid sized one to dress up. The girls asked if I still had your Captain Rex costume. I knew where it was, but I had not touched it since you wore it on our last Halloween together. They offered to buy a new one. I told them it was o.k. We could use your little one to put on the mannequin. They both asked if I was sure. I told them I was. I can be brave. I can do this. I went and got it. I inhaled it, hoping for it to smell like you. It didn’t. I set it out for Stacy to pick up to give to Fernanda to let her work her magic. She sent me a picture of it today. It took my breath away. The little mannequin dressed up like you, looked just like you did when you actually wore the costume. I must have sat and stared at that picture for a good five minutes. I cannot believe that this is my life. That I don’t have my own Captain Rex here with me anymore to protect me. I cannot believe a mannequin is wearing my dead child’s costume. I do these things for you. Because I know you would want it to be this way. If you can’t be here with me, I will honor you by bringing your little light everywhere that I can. Including a Children’s Hospital ward where we spent so much time.
I have not been sleeping well. My internal clock has been waking me up at about 2 a.m. for months now. Last night, when I was roaming around our house, I looked outside. I saw a cat in our driveway and right behind that, a big raccoon. I don’t think I’ve ever seen a raccoon in Arizona before. I sat and watched it. I tapped on our kitchen the window. It stopped and looked my way. It was weird and creepy and I was so sad when this morning when I didn’t have you to tell my story to. I told your brothers. They thought it was pretty cool. Liam of course tried to tell me it was just another cat. Such a little skeptic he is. My 2 a.m. witching hour can be fun, Ro! Just throw a few raccoons my way. I then went on Google to do some research on if cats and raccoons are friends. Turns out, they are not. That raccoon was very likely stalking the cat to eat it. The things you learn at 2 a.m. I am a wealth of knowledge in all things raccoon now. I am also very productive at 2 a.m.  I would give anything to have you here to cuddle up to because I can’t sleep. I would give anything not to be waking up because I don’t have you here to cuddle up to. I fucking hate 2 a.m. 2 a.m. blows. I usually fall back asleep around 5 a.m. I need to find a hobby during my witching hours. Maybe I’ll start baking.
I saw your Sparky yesterday. He asked me why I looked so perplexed. I just told him I had a lot going on in my head, like always. We sat and caught up. I was having a really, really sad day but didn’t want to let him in on that. So we talked a lot about your foundation and a few other top-secret things I have in the works. I was wearing my most favorite Frye Cowboy boots that I have had for about 7 years. He made fun of them and made me laugh. I told him they were my favorite boots ever. He said he knew. I left there, feeling like my heart was going to explode from the pain of missing you. I attempted to drive home but had to pull over mid way so I could bang my head against my steering wheel and cry. I called your Sparkly up.
Me: “Do you think I’ll ever stop being so sad?”
Him: “Darling. Come on. Your boots were not that ugly.”
Not even his witty remark made me giggle. It was quiet. I just sat and cried into the phone.
Him: “I do. I honestly do. Not right now, but someday you won’t be this sad.”
Me: “I’m so sad all the time. Nothing helps. I miss him so much.”
Him: “I know you do.”
I sat and cried into the phone while he just listened.
Him: “Are you home now? Please get home. I will speak with you tomorrow.”
Me: “O.k.” I’m almost home.”
I got home to our empty house. I laid on our bed and cried for a long time. My face seems to be constantly wet these days. I wonder if my never-ending tears are because of how much I miss you, or all of my hormones due to being pregnant or a combination of everything. I used to be able to go days without crying. Now I’m crying every single day, sometimes every single hour. At least my anger seems to be under control. I don’t want to sit and punch things or hurt myself. I just want to sit and cry, so I do.
I’ve got to go now, Ro. Lots to do but all I really want to do is be busy taking care of you. I’m sorry. I miss you. I love you. I hope you are safe.
xoxo
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.

G’nite Halloween. Thank you for being over.

Ronan. This is my second Halloween without you. I survived. I woke up today, feeling alright. I went to my office and got a lot of things done. Most everybody came dressed up in a costume. They had me chuckling most of the morning with their creativity and fun. It felt really good to be able to laugh this morning and I thought I was going to be o.k. After getting so much stuff done that I thought my head was going to explode, I snuck out of the office to go run some errands. I was on a mission to find white face paint for Quinn and was having a hard time tracking it down. After about 3 stops later, mission white face paint was a success. I ran to see your Mr. Sparkly Eyes and bring him a coffee. As soon as I pulled into the parking lot, my eyes started to water and the tears started falling. I kept hearing Taylor’s song play over and over in my head again. “And its about to be Halloween
You could be anything you wanted if you were still here.” I started thinking about our last Halloween together and then my mind started worrying about you, like I always do so much. Where are you? Who is taking care of you? What are you doing? Do you know how much I miss you? I know you miss me just as much. Why did you have to be taken away? I looked at myself in the mirror and wiped my eyes, took a deep breath, grabbed your Sparkly’s coffee and apple and headed inside.

I sat down and waited. Don’t cry. Don’t cry. No crying today. Soon, your Sparkly appeared and sat down next to me. “Hi. Are you o.k.?” he asked. I just got up and wrapped my arms around him while I avoided his eyes. I sat back down and the flood of tears came next. “Hey, it’s o.k. it’s just another day. I know, it was his favorite day. I know it’s hard today, but you will get though it like you get through everything else.” I didn’t really say much. I couldn’t because I couldn’t even breathe. I just sat and wiped away my tears for a few minutes. “I have to feed Poppy. She is a vegetarian.” I broke out the apple I brought for him and my little veggie snack pack for your Poppy. I sat and we ate while catching up on some things. I guess at one point he had me laughing which I didn’t even notice, but our Sparkly told me it was nice to see me smile. I still don’t smile as much as I used to. I miss it sometimes. The rest of our conversation floated back and forth between you and Poppy. He also told me he thinks I should have about 3 more kids after this one. I told him he was crazy and that being pregnant was not good for my mental state of mind. He said he didn’t think anything was good for my mental state of mind because how could it ever be after going through something like this. Exactly. Nothing will fix this, Poppy included. But we all know that she will bring a little piece of you back and the little bit of happiness that is missing from our lives. We all need her. Your Sparkly included. I left your Sparkly and he told me to just do my best today, to get through tonight, and go to bed. I told him I would indeed do my best, for Liam and Quinn’s sake. That is just what I did.

I picked your brothers up from school. I was exhausted and all I wanted to do was shut my door, take a bunch of sleeping pills and never wake up again. I let my mind go there for about 5 seconds and knew that was of course, not an option. Instead, I got your brothers all ready for the night. I sat Quinn down and painted his face for his KISS costume. Apparently, I have missed my one of my other many callings in life which is a make-up artist. His face turned out awesome and he was so excited. We headed out to our dear friends, The Willets for some trick or treating. The place where we last took you. It was hard. Everything about today and tonight was hard as I imagine it always will be. This might be the hardest holiday to try to celebrate, without you. Your daddy and I somehow survived. We are both so thankful for good friends. We are both so glad to be home and in bed. Your brothers had a great time and that is all I could ask of for tonight. It is all I wanted besides you back with us all. I’m so sorry, Ro. I hate that we are apart more than anything in the world. Every 4-year-old was out tonight. They were everywhere, but you were nowhere to be found. I will never understand any of this.

This is all I can write tonight as I can hardly keep my eyes open. I did have an ultrasound yesterday. Poppy is still a Poppy. I am so thankful for that. I really think having another little boy, would have been so hard for me. I know I would have loved him so much, but the reminders of everything you… another little boy who wasn’t you, mentally would have been tough to deal with. A little girl is something so different. Something I have never experienced. I am really, really thankful you made her a girl. Thanks, Ro baby. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Is it possible to Die choking on your own Tears?

Ronan. Days are filled with emptiness. They are not getting easier. Nights are worse. Halloween is approaching. How am I supposed to celebrate our favorite holiday, without you? If you were here, we would be going to your school tomorrow to celebrate. I would be tucking you into bed right now, but you would have been too excited to sleep. I’m sure you would be dressing up as someone from Star Wars. It was our tradition.

Baby Ro- Chewbacca. 2-year-old Ro- Master Yoda. 3 Year old Ro- Captain Rex. Who would it have been this year? I’m not sure. Does it matter? It does to me. Halloween cards come in the mail. But nothing for you. I lose it. “What the hell?” I scream! “Did he not exist?!” “Is he that easy to forget?!” The hot tears stream down my face. ” I want a card for him, too! Not just 2. 3 little boys. I HAVE 3 BOYS! I want him back! NO! I DO NOT WANT A PUPPY OR A FUCKING BABY FOR CHRISTMAS! I WANT RONAN! I ONLY WANT RONAN!”

I don’t get to go to your school tomorrow for your Halloween party. I get to go to only Liam and Quinn’s. How am I supposed to put on my bravest face to handle tomorrow? I don’t have a choice. I have to do it for them. I had Quinn’s conference this week. His teachers words….”He is a gift to me. Such a delight. So kind to everyone. Excelling in everything. Needs a little work on his handwriting. He is off the charts in his math….” I felt like I was in an alternate universe. I looked all around the classroom at all the kids’ work. I started to cry. I apologized to his teacher. “I’m so sorry. I have no idea what’s been going on in this classroom. I’m usually the mom that knows it all. That is always helping. I haven’t been in here once this year.” She just looked at me and said that it was o.k. That I have a pretty good reason, not to be. But I don’t want a reason or an excuse.  I just want my life back. I want to be the fun classroom mama again. I don’t know how the fuck I’m going to get through tomorrow. I have thrown up all day about it. I want to go to your school. I want to dress you up. But some evil mother fucker out there decided that you brought me way too much happiness in my life, so you had to go away. But I didn’t do anything wrong to have you taken away. I only loved you so much. That is the only crime I am guilty of committing.

I went to Sedona on Tuesday. Dr. Jo couldn’t make it to Phoenix this week, so I drove up to see her. We did our session at her house and then went and grabbed lunch. It was a long but peaceful day and night. I was able to smile and breathe a bit. I know you know why. You always do. I came home, relaxed and fell asleep all night long. My sleeping has been better. I have not taken my Ambien since the night before I left for my Sedona Grief Retreat weekend. I have been able to fall asleep and I have been staying asleep until about 2 a.m. I always wake up around this time and than, the pacing begins for about an hour or two. I look for you everywhere. I scream into pillows. I cry.  Dr. Jo says it’s my animal instinct taking over. I’m like the mama tiger at the zoo, who has been separated from her baby. The mama tiger paces back and forth. Sometimes she even chews off her own limbs  because she goes crazy not knowing what to do without her baby. I feel like that mama tiger. I’m trapped on the inside of the glass cage, looking for you, watching as everyone on the outside just goes on with their lives. Everyone is happy. How can that be? What? You have a new boyfriend? No. I don’t want to meet him. I want you all to go away. I don’t want to see life go on. I want life to end. I am incapable of feeling the happiness that you feel. That you deserve. I cannot be happy for you. So, please just let me be. I have nothing left to give anyone. I am doing my best to keep myself alive. That is all I am capable of now. Forgive me. But Ronan died. Doesn’t anybody understand? How is Halloween not canceled this year? How is your school, celebrating like it is a normal year? Don’t they miss you so much, that they shouldn’t? No. Only in my mind should they. Because to me, you were so special that the whole wide world should stop. But nobody misses you, as much as I do. Which means that nobody is even capable of feeling the pain that I feel. Which means that nobody loved you more. Which is why I physically hurt so bad 24 hours a day, 7 days a week. I don’t get a break from this pain. Ever. Not that I would want it. I wouldn’t give this pain to anyone else. It is mine to carry for the rest of my life because it reminds me every second of the day how much I love you. How much I will always love you. So much that I often think I am going to choke to death, on my own tears.

This week has been a blur. I took your brothers to a park to play after school. They had the time of their lives. They played football in the rain, with some other kids. I could have sworn you were right there with them. I cried on the way home because you weren’t. I told your brothers how sad it made me that you were not there, with them. How much you would have loved it. They were both covered in mud, soaked from head to toe, just like they should have been. Where are you? Who are you playing with? How is it not us? Why is it not us? Do you think I killed you? I was supposed to keep you safe. I promised you I was going to get you better. But then you just died. Just like that. How am I supposed to live with this, Ro?

I don’t know. I don’t fucking know anything anymore except everyday without you is harder and harder and who the fuck came up with the saying that the pain will get easier as time goes on? I know who. Some jackass who is not a mom. Probably some asswad fucking fuckwad scientist who had to bury their cat. Clearly it was not a mom. Or a dad. Who’s almost 4-year-old died.

I don’t know what else to say tonight. Except what I say to you, every night. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams, babydoll. I love you.

xoxo

P.S. Dear loveliest of lovelies:::::: So many of you sweet peas have sent the most beautiful gifts. A lot of it, pretty jewelry for me to wear. Please know these things, always make me smile. Today, I wore one of my new favorite things. A little delicate gold necklace that has, “Fuck Cancer,” inscribed on it as well as a small purple jewel hanging from the chain. Oh, how I proudly wore this today. Thank you, from the bottom of my heart. xoxoxoxo a million times over.

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

Princess Leia and Captain Rex take on the world… or at least the halls of Sloan-Kettering

Last night was a little better than the night before. We have had a really, really, extra sweet nurse, Alex, the past 2 nights. She is adorable, looks like she is about 12, and really gets along well with Ronan. She is super patient with him, very calm, and is very doating. He meshes well with her which makes it nice on my part. All of the nurses are great here, but Ronan seems to have a connection with Alex. Reminds me a little of Arica back home, one of our favorite nurses on the floor of PCH. Miss her. I asked Alex what we could do last night to make sure we had less beeps. She tried her best, but the stupid “asspole,” went on beeping most of the night. “Inclusion in line, Inclusion in line!” is what it said. Which basically means there is a bubble in the fluids he is getting which causes it to beep every half an hour or so. Very disruptive and as my Charisma would say, “RUDE!” Ronan also had to be woken up twice to be given his morphine, which was not fun at all. He was a very mad little boy about it. After about 20 minutes of fighting, he swallowed his medicine and went back to sleep. Seems cruel to wake a sleeping child but rules are rules around here.

My mom came to relieve me around 11. Ronan was in a much better mood this morning when she arrived. We were sitting in our bed playing, when we got a special delivery via fax. A message from our very own “A,” back home! It was the sweetest note written to Ronan from her. I read it out loud to him and he got the biggest kick out of it. She even drew a monkey at the bottom of it for him. So sweet and thoughtful of her. It made both of our days. After our special letter, I gave Ronan his bath. He once again, sat and bathed all of his Star Wars guys which kept him busy. I told him goodbye and slipped out for my daily break. So thankful that my mom is here to help. She has had a lot of nice bonding time with Ronan. It is special for both of them. I went back to the RMH and thought about going on a run, but my left shoulder was killing me today. I decided to go around the corner to the Asian massage parlor I discovered a couple of weeks ago. It seriously looks like something out of a sketchy movie, but one thing I love about this city is you can never judge a book by it’s cover. It is the cheapest/best massage I’ve ever had in my life. Forget that there is almost no privacy as you are separated from other customers though sheets hanging from the ceiling that separate your beds…. the two times that I’ve been there, the place has been empty. A very well hidden secret I suppose 🙂  The women there give the BEST massage I’ve ever had in my life. I left there with still some pain in my shoulder, but it is better than it was. Thank you, ah sookie sookie now. (that was for you, daddy woo)

I returned to Sloan to find my mom chatting with Dr. Kushner. He stopped by to check in. We talked about Ronan and how great he looks and he told me him not having an ANC for this long is normal, considering all he has gone through. He also told me it’s great to see how well he is tolerating the chemo as he does not look like a sick child whose just completed his 8th cycle. He is such a tough little man. We talked a little more about our plan of attack but nothing will be confirmed until we see the results of Ronan’s scans, which are next week. Scanticipation begins. UGH. Dr. Kushner also sat and talked to me about running, because he is an avid runner himself and we usually always talk about it. He gave me some great Central Park tips which I always enjoy. He really is a very nice man.  Every time I look at him, I can’t help but obsessing over how brilliant he is. I cannot imagine the way his mind must work…. he has revolutionized so many things in the Neuroblastoma world. I really have to focus when I talk to him, otherwise I catch my mind wandering thinking about how he does what he does, eats, breathes and sleeps this disease everyday of his life. I’m curious as to how he came upon devoting his life to Neuroblastoma. So many questions, never enough time.

While I was out today, I caught up on things like mail, bills, emails, phone calls, etc…. I got to hear the voices of a few of my dear friends…. Fernanda, Tricia Boo, Niki, Danielle, Marisa, Pam, Amy, Lindsey, Auntie Karen, and Mr. Sparkly Eyes. I don’t get a lot of time to talk on the phone here due to being at the hospital so much. When I’m out alone, walking the city, I try to return a lot of my calls. It was so good to talk to my friends today. Good to hear their voices and to check in. Miss them all much.

Ronan and I spent tonight like we always do. We walked the halls for about an hour, shooting anybody that came our way. He was Captain Rex and I was Princess Leia. The nurses, janitors, doctors, patients, are great at playing with us. We came back to our room, played Star Wars, then called Liam and Quinn. It was good to hear their voices and I always love to hear the conversations between my 3 monkeys. Adorable. I cuddled in bed with Ronan and we sang “Twinkle Twinkle Little Star,” together just like we sing every night while I rubbed his back. It didn’t take much for him to drift off to sleep… it’s late here, midnight now and he fell asleep only about a half an hour ago. Sweetest dreams to the sweetest little boy. I whispered that I loved him to the moon and back and kissed him on his cheek. He tastes like milk and sugar.

My Tricia Boo is taking the Red Eye here tonight. Cannot wait to wrap my arms around her! She is staying until Sunday and Niki got in today as well. Double YAY! Niki is here with her kiddos and I am going to try to see them tomorrow. I only wish Ronan would be discharged so he could see his friends too 😦 Keeping my fingers crossed that it happens by this weekend. I was telling Mr. Sparkly Eyes tonight that we have been inpatient for almost 3 weeks now. He feels awful and wanted to know how I was doing. I tried my best “Mrs. Positive Attitude,” and replied that I was making the best of it. He then went right to, “Cut the bullshit and tell me how you’re  really doing.” Can’t get anything past that man and it made me laugh out loud. I am such a fan of the bluntness. How am I doing this?? I honestly have no idea. I texted Woody in the middle of the night 2 nights ago to say if he didn’t bust us out of here I was going to murder someone. I have my moments of temporary insanity, but then they are usually quickly washed away by a flash of happiness, gratefulness, or beauty that comes my way… even if it comes in the form of something as small as Ronan telling me I look pretty and thanking me for being his mom. I swoon for his little, kind words. They mean everything to me.

Alright my sweethearts. Tired tonight and going to try to get some rest. G’nite and sweet dreams to you all. G’nite my Big Daddy Woo. Enjoy our cozy bed and cuddle up to my Liam and Quinn for me extra tight. I LOVE YOU AND MISS YOU SO MUCH.

xoxo

Magic Medicine…. Day 3 Round 6

Today was beyond depressing. I sat in a hospital room the entire day with Ronan. We didn’t leave once and he made me close all of the shades so it was as dark as it could be. He slept a lot today and I pretty much just cuddled up beside him, talked to him, and rubbed his back. He perked up a little bit when I told him that he would be able to come home tomorrow. After I told him this, he grabbed my face and kissed me. Ronan may not be big on words this week; but actions speak louder than words and that right there proves what I’ve know all alone. Baby boy just wants to go home. Woody came by to bring Ro lunch, although he didn’t eat much of it. My friend, Melissa, also came by to bring Ronan his favorite Sponge Bob push-ups. Thanks, Melissa:) Woody pretty much insisted that I come home tonight to have a night at home with him and the boys.

Today, is a new day! Didn’t get to finish my post from last night. I put the computer away to spend some time with Woody, Liam and Quinn. We all cuddled up on the couch and watched a movie. It was so nice to be home and sleep in my own bed. I am back at PCH now and we will be discharged at 6:00 this evening. Ronan already looks like a different boy because he knows he gets to go home tonight. He is happy and interactive today. I am so relieved to see this and can’t wait to take my little monkey home!

I can’t believe today is Ronan’s last day of chemo! What a milestone. I will be doing my dance tonight:) Yesterday, I got an email from a friend of a friend, asking who Ronan’s favorite Star Wars character was. I told her Captain Rex and before I knew it, I was emailing back and forth with two amazing women who have been involved with the making of Star Wars over the years. They were able to get the person who does the voice of Captain Rex to record a message just for Ronan. I played it for him this morning and you should have seen his face! It was priceless and he keeps playing it over and over on my iPad. Thank you Kathryn and Lynne for making Ronan’s day!!!! And thank you to Dee, who is the voice for Captain Rex. You have no idea how happy you have made my child!!! Niki~ You know the most amazing people… thank you my dear friend. I can’t wait to get home and see you my beautiful neighbor!!!!

This morning when I got to the hospital I did what I do every morning and checked on Ronan’s one last long eyelash. It has been hanging on forever. I noticed this morning, that is is gone. His little eyebrows are almost gone as well. I know they will grow back, but that one little eyelash always made me smile. As silly as this sounds, I am really going to miss it. I’m just going to think of it as it being part of Ronan’s body getting rid of all of his cancer so he can come back to us as a brand new boy; cancer free and more beautiful than ever.

I hope you all have a lovely weekend enjoying the precious time you have with your friends and family. Love you all!

xoxo