Everything’s not lost, but really it is

Ronan. You were everywhere today. I had to stop and catch my breath a few times just so I wouldn’t throw up. I am reminded of you in everything and everywhere. In the whole avocado that Quinn had for lunch. In the Mickey Mouse beach bag that Stacy carried her kids’ beach stuff in. In the Star Wars swim trunks that Mac had on today. Even as I watched your cousin, Jake, eat some Mandarin Oranges at dinner. I had to fight back the tears over all of those things today. You loved all of them so much. It’s so strange to see these things that have such little meaning to everyone else, but they mean everything to me. I don’t know how to deal with all of those little things because every time I see things like this, I just want to curl up and die.

I am not living. I am surviving. And it sucks. I still don’t understand why you were taken away from us so quickly. I think about this all the time. It kills me that everything changed so suddenly and how rapidly your disease progressed. I swear it happened over night. Your daddy and I fought so hard for you. We talked to the best doctors, researched everything we possibly could and it still was not enough. It all happened way too quickly and I’m still trying to make sense of something, even though I know I will probably never get an answer. I deserve one though and I am angry at the way the doctors just seem to want to sweep you under the rug, like you never existed. I want to hear from them that they are sorry. I want to them to look me in the eyes and see their pain because  they couldn’t save you. I want some sort of acknowledgement that you were here and they are sorry that they couldn’t save you. I know this won’t make you come back, but I want them to hurt the way I am hurting so that maybe they will work harder to save the life of the next child who is going through something like this. I know that these doctors work hard, but not fucking hard enough because you are gone. I want someone to blame, even though I know nobody deserves to carry the burden of this. This is the cause and effect of our insanely mad world. It is the only way to explain how such a thing can happen to a child or a teenager. Complete unfairness and insanity. There is no other answer.

I ran on the beach tonight and was so not feeling it. I pushed through for you though. I sat and watched a daddy pulling his little girl on a boogie board and then I watched as the mom came and swooped her up and off they went holding hands, running down the beach. I wonder if that mommy knows how lucky she is. I would have given anything to have been that mommy today, running down the beach and holding your hand. Instead, I get to watch somebody else doing it. It was another one of those outer body experiences that I seem to have all the time now. After I watched the mommy and little girl, I laid down and the sand and looked up at the sky and just cried. I didn’t want to finish my run, but you forced me to get back up and pound out the last 2 miles. The waves chased me a lot today and at one point I couldn’t run fast enough away from them. My sneakers ended up getting soaking wet. I thought of you and pretended that the waves were your little feet trying to run after me. I have to hold on to things like this; this imaginary life I have made up in my head just to get through the days without you.

I heard from, “The Stranger,” again tonight. Except now, I know her name. I liked hearing from her and a bit of her story. It took a lot for her to write her first email to me but I am so glad she had the courage to do so. Her words helped me last night when I was really needing it. She talked about how she struggled for nights to write that email and then to actually send it. After my day yesterday, her email could not have come at a more perfect time. I know that was you, Ro. Your little way of getting to me. Thank you for that.

Quinn and Liam have their cousins, Jake and Carter over for a sleepover tonight. All is quiet except for your big brother, Quinn is in bed with me watching Sports Center. I knew he would end up in here with me and not out in the living room with all the other boys. It has been so nice having your brothers spend time with their cousins. They have formed such a bond over such a short period of time and all the laughter and just watching them all be boys has made my heart a little happy. It is helping me to see your brothers laugh and smile despite the sadness that I know weighs heavy in their hearts. I’m watching them heal a little more one day at a time and I know a big part of this is the family that surrounds us. I am so thankful for that.

I’m so sad tonight, Ro. Your daddy is not here and when I talked to him on the phone I could hear how sad he was being at home all alone. Without us and without you. I don’t know what to do or to say except for to tell him I love him. I’m having a hard time talking to him about you yet because everything is too painful. When we do sit and talk about you we both just end up crying. I don’t think the crying is ever going to stop. I don’t think there are two parents who ever loved a little boy so much. I like to think that it is because of the love that your daddy and I have for each other which is why you were given to us. We love each other so much and you were such a gift. I just don’t know why you had to be taken away. And I don’t know how we are just supposed to go on because it does not seem possible to live our life without you. I’m clinging on to anything I possibly can, but it will never be enough and I honestly don’t know how I am going to survive this. This life hurts and this life is cruel.

But I am going to continue to fight through this because I know it is what you want. It is what your brothers deserve and your daddy too. But there is not a day that goes by that I wish the world would just swallow me whole. Every inch of my body hurts and misses you. That will stay with me for the rest of my life. I’ve somehow got to find a way to learn to live this new life without you. I promise I will try as long as you keep guiding me and giving me strength.

That is all for tonight my love. I hurt too much to write anymore. I love you to the moon and back my most beautiful boy. Sweet dreams.

P.S. Every song on Pandora tonight has reminded me of you. Are you the one making this little playlist for me, my sweet boy? Your gifts are all around. Everyday with you was the best day of my life. I love you, Ro baby.

xoxo

The Twilight Zone

Ronan. Can you give me a reason to get out of bed today? Because I cannot find one. I’m still waiting for you to come and wake me up and tell me to make your extra cheesy eggies. I’m still waiting for you to ask me to put on “Mickey Mouse,” for you and sit on the couch and watch it with you. I’m still waiting and until you come back, I don’t know how I am going to function. The truth is, I don’t want to function and I don’t want life to go on. Life for me has completely stopped and that is apparent in the way that each day and night without you drags on and on and on. I’m trying to be productive. I really am, but it’s torture. Last night, I tried my best to be a really good mom to your brothers. They are so sad that the amount of energy I have to pour into being around them and making them happy is exhausting. I will forever be working extra hard to fill your void. That is a lot of work for a mommy. I never realized how much of a helper you were to me with your brothers. You filled them with all the happiness in the world and now that you are gone, I have to try to fill your shoes. It is not an easy job. They had Luca stay the night and Tricia and Macy came over. We piled in the car and took the 3 boys for Fo Yo. The boys giggled the entire way there. You would have loved it. All 3 of them sat in the very back, Macy sat in the seat in front of them and Tricia sat by me in the passenger side of the car. Your seat was empty. I saved it for you. Macy, Tricia and I wore our Spirit Hoods out last night just for you. It was silly fun and I needed the laughs. I can always count on those when your Auntie Macy is around.

I sat outside with those two girls and we cuddled on the couch and talked about you. I showed them the video of you on my phone from San Francisco when you were at the airport and you were yelling “Bye Macy!” to her. She hadn’t seen it yet. We cried. I showed them the last picture I took of us on Mother’s Day. You didn’t even look like yourself baby. Your daddy asked me to delete it but I’m not going to. I’ll keep it forever even though that s not the way I want to remember you. I know it won’t be, but I still need to keep that picture.

Ro~ I have no idea when I started that post above. All I know is it’s now a Saturday night. And the only way I know that is because tomorrow is the day that I am hoping really will not come. Tomorrow, is the day that I think your obituary comes out in the paper and I think it’s the day we have your services. I don’t know how I am going to survive tomorrow. I’ve already asked Fernanda to find my twin in life, so I don’t have to go. She told me that you would not like that; that you would know it wasn’t me there. I disagree. I think you would like it because you always liked how we used to break the rules together. It was one of our favorite things in the world.

I still cannot believe you are gone. I wonder if I will ever believe it.  This has got to be an episode of “The Twilight Zone.” Everything that goes on in our new world without you doesn’t make any sense at all. I’ am so mad. The one thing about all of this that nobody tells you about losing a child is how slowly time passes afterwords. I swear I don’t know how I’m going to get through life if it continues to be this way. It is so slow that it is painful. I hid in my bed almost the entire day today. I know it’s not how you would want me to be, but I cannot help it. I care about nothing. This is such an awful thing to say, but I don’t even want to be a mom anymore.  And that is my most favorite thing in the world. Everything takes so much energy now. Trying to fill the void that you have left behind is impossible but I have to continue to try to fill it for your brothers sake. Especially Quinn’s. He is wandering around like a lost little puppy. It makes me so sad, and I am trying my hardest to shower him with anything I have left; but it is not much and I know he feels it. He is stuck to me like glue. You would think this would satisfy me and fill me up, to feel all of the love he has for me. It doesn’t. I feel like I am in the bottom of a hole in the ground, looking up at the bright sky and trying to climb my way up and out of the hole. I feel like I’m going to suffocate 24 hours a day. I feel like this is never going to get any better.

All I want to do is sleep because at least in my sleep I get to see you. Even though the dreams I have of you are not happy dreams yet. I mostly dream about you dying. I wonder if this is part of the process. There has to be some psychology behind this. I hope to someday have sweet dreams about you. I miss you, Ro. I miss you every second of everyday. I would give anything to kiss your little lips again. To hold your little hand and look into your big blue eyes.

Your daddy asks me all the time if I need anything. You know what my response is? “Ronan.” I can’t help it. Your name just slips out of my mouth without me even thinking about it. I know he wants you just as badly. He hurts too. But even he admitted to me today that he knows that he doesn’t hurt as much as I do. He gets the whole mother and son thing. He is such an amazing man, that daddy of yours. I am trying to be strong for him and he keeps telling me what a great job I am doing, but I know I am not. But he tells me this anyway. He tells me this as he lets me sleep the day away and takes care of the house, the errands, the chores, your brothers, and his work. I am pretty much useless right now. I hope someday I can make this up to him. I hope someday I can go back to being a productive person of society. I’m not even existing. I’m barley breathing.

I don’t want tomorrow to come. I’m expecting it to be like an out-of-body experience. I told Tricia tonight just to physically get me to your service tomorrow is going to be an ordeal. I have a vision of running away and never coming back. I couldn’t do that to you though. I have to keep my head on somewhat straight for your brothers too. I refuse to fuck up their lives. I have to keep reminding myself that there are other people involved in all of this. I have to keep reminding myself not to be selfish but that is all I really want. Is to be selfish about losing you and to pretend like I am the only one hurting. I know that’s not the case. The sadness that exudes from the others around me is very apparent. It is so very hard for me to see as I only want to make everyone feel better and comfort those around me.

Tonight, my besties from high school all came in. I had them over to our house. Everyone was so sad and I was having such a hard time as I don’t know what else to do with everyone else’s sadness. So what did I do, you may ask? I know you saw me and watched us. I insisted that your daddy hook up Rock Band so we could play it. Otherwise, I’m sure we all would have wound up in my bed crying like babies and that was something I could not handle. Rock Band was a great distraction and I even broke out all of our wigs that we used to wear for it. There were some laughs and your crazy Aunt Macy is an amazing singer! She stole the show. Quinn played the guitar and kept getting amazing scores of 97%. He was so cute. Liam attempted the drums, but was soon not so into it so he ran off to play something else. All of the girls left to go back to their hotel and I will see them tomorrow. I’m so happy they are here, but so sad it is for this reason.

As we speak, Macy, Tricia, your Daddy, Uncle Jay, and Kenny are out in the livingroom playing Rock Band, again. I am snuggled in bed with Quinn and Liam is sleeping with Papa Jim. Nana is in your room, (a.k.a. the hot lava room). I’m tired tonight but restless as well. I wonder what you are doing wherever you are. I sit and think crazy things about how you watch me and are just trying to get back to me. Is it torture up there for you too because all you want is to be back with me?? This all seems like a fucking lose lose situation to me. How could you be happy like I want you to be when we are apart?? Nobody knows the answers so I have no choice but to try to figure them out myself. I’m just going to let you be my little guide. I promised you I’d never let go of your hand and you know I don’t break my promises.

I’m getting sleepy now. If you visit me tonight, in my dreams….. please no more scary ones like I’ve been having. Let’s take a trip to the beach together or something else. I don’t want to see you dead in a stroller in my bathroom. But you know what, if that’s the only way I get to see you, I’ll take it. It’s better than not seeing you at all. I love you, Ronan. To the moon and back forever and ever. Sweet dreams, baby boy.

xoxo

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.

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

The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .

The show must go on

My skinny little chicken leg boy is finally getting his appetite back. Finally. It’s been about 2 weeks since he’s really wanted to eat. Now, I can’t keep him full. He is back to eating every hour on the hour. Oatmeal, eggs, Peanut Butter and Jelly, Fruit, Pizza, Carrots, Hummus, Cottage Cheese, Peas, Cheese Crisps… I can’t keep up! All I’ve done today is cook, clean, cook, dishes, and cook some more. It’s a good thing though… his little legs look like sticks. I need to fatten my chicken up before we go into Stem Cell Transplant. We have a clinic visit tomorrow to check Ronan’s blood levels, platelets, etc…. I’m still waiting for him to crash from this last round of chemo; but so far, he seems to be doing well. His energy is still a little low, but his spirits are great. We have really been enjoying being at home together. Lots of cuddling and down time which we both have needed. Marisa stopped by today with Baby Max. It was so nice to see her and Ronan even let her stay. He shut himself in his room at first but I finally coaxed him out. He sat on my lap and watched Marisa feed and change Max. He was very intrigued and just sat quietly, giving us a little smile here and there. After Marisa left, Ronan told me that he wanted a baby sister. Oy vey! He loves babies has been talking all day about Baby Max’s visit. He told Liam and Quinn all about Max which then led to the discussion of baby names. It was hilarious. Liam said if he had another baby brother, he would name him, Ochocinco- for the football player, Chad Ochocinco. I told him no way, so then he decided on the name Zach, for Zach Miller, the former ASU football player. Quinn was really sweet and said if he had a baby brother, he would name him Finn and if it were a girl, Isabelle. Ronan has decided that he would name the baby, Mickey Mouse. So cute. I was surprised how into the whole baby conversation they were. Just shows me what sensitive and sweet little guys I have. I’m pretty sure the baby shop is closed around here, but it was a fun conversation to have with my 3 little guys.

Tricia came over last night and we went for a quick 4 mile run. It was nice to be out with her. It was no Central Park but it felt good to be out running and it felt good to be with her. We talked the entire time and laughed a lot. I know I say this all of the time; but I don’t know what I would do without her. I could not have picked a better Godmother for Ronan, and I could not have a more amazing best friend. I so owe Woody for the rest of my life for introducing me to Tricia. Thanks Woo:) I never imagined in my life that I would need my best friend as much as I do now.

Ronan didn’t nap today, and I am listening to Woody play guitar and sing him to sleep. There is nothing more peaceful than watching Ronan as he drifts off to sleep. He is so perfect. Have I mentioned how lucky I am to have the husband I have?? He left the house this morning, worked hard all day, came home, took Liam and Quinn to basketball, dinner, came home and helped them with their homework, and now he is singing Ronan to sleep. He doesn’t even get to sleep in our bed anymore due to Ronan taking over and insisting that he sleeps in bed with me and nobody else. Woody grins and bears this…I feel awful but this is just the way things have to be for now. There are not many men out there who would be able to do this on a day to day basis, and still have a good attitude about everything. He does it all, is constantly telling me how beautiful I am while watching me fumble and fall, all while trying to pick me back up over and over again. I would be nothing without him and I’m not ashamed to admit it. He is not the lucky one. I am.

So, for the most part, today was a good day. A good day now consists of things like Ronan having an appetite, a few smiles here and there, and having my family all under the same roof. A good day now is so simple…. how could have it been so complex before all of this? How was I not grateful for everyday that I had with Ronan when he was healthy?? I guess it was because in all of my wildest dreams, I would have never imagined that my worst nightmare would come true and I would be forced to reexamine everything that I thought made me happy. What a hard and awful lesson to learn through the eyes of a 3 year old boy.

That is all for tonight. I am actually in a good mood and don’t want to spoil it with my ever consuming dark thoughts. I’m going to enjoy some quiet time with Woody and finish the movie we started last night, “Harry Brown.” Sweet dreams, my friends. Love you all!!!

P.S.

S.B. I know I am going to dream the sweetest dreams tonight knowing you are dancing and drinking your wine under the moonlight and that everything is alright. xo

Ronan’s favorite song for Woody to sing and play guitar to.

All Her Favorite Fruit by Camper Van Beethoven

I drive alone, home from work
And I always think of her
Late at night I call her
But I never say a word
And I can see her squeeze the phone between her chin and shoulder
And I can almost smell her breath faint with a sweet scent of decay
She serves him mashed potatoes
And she serves him peppered steak, with corn
Pulls her dress up over her head
Lets it fall to the floor
And does she ever whisper in his ear all her favorite fruit
And all the most exotic places they are cultivated
And I’d like to take her there, rather than this train

And if I weren’t a civil servant, I’d have a place in the colonies
We’d play croquet behind white-washed walls and drink our tea at four
Within intervention’s distance of the embassy
The midday air grows thicker with the heat
And drifts towards the line of trees
When negroes blink their eyes, they sink into siesta
And we are rotting like a fruit underneath a rusting roof
We dream our dreams and sing our songs of the fecundity
Of life and love
Of life and love
Of life and love