A death day and an almost birthday

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Ronan. We made it through your death day the best we could. I didn’t sleep much the night before and I even had my alarm set to go off during the time that you passed away, just so I could be awake. I didn’t need the alarm because your Poppy sister woke me up almost exactly at the time you left this earth; because she wanted to eat. Of course she did, right Ro? Poppy knows what’s up. I did a lot of my crying the day before you passed away, a lot of it the night before, and still a lot of it on the awful day itself. I picked up the phone on your death day for the one person that promised to call and the one person that I would pick up for. Your Sparkly. I started crying as soon as I saw his name pop up on my screen. I let him do what he does best which is say a few things to help me get through the day. I didn’t say much, just quietly cried instead and told him I loved him. Not many words were needed by either of us.

We spent a quiet day in Sedona together by the river and in the woods. We had a little lunch and an early dinner. At one point, your Daddy and Liam ran into the store while Quinn, Poppy and I waited in the car. Quinn was changing the music in my car and a mixed C.D. that I had made, came on. The first song being, “Ronan.” He seemed so excited about it. “Oh! I haven’t heard this song in forever!” I just smiled at him and told myself to let it play while I sat in the back seat next to Poppy. It only took about 5 seconds of listening to that sweet voice and those oh so powerful lyrics before I lost it completely. Full on could not breathe, sobbing, as I wiped tear after tear away. I am still amazed at how Taylor did the most beautiful job at capturing my grief in such a way that it leaves me breathless every time I listen to your song. I love it so much, but it is so hard for me to get through. Quinn just watched as I cried, bent his head down, and held my hand. I don’t know if I’ll ever be able to get through that song without crying. I could see every single word play out in my head like a real life movie except it’s not a movie, it’s my life and it never gets any easier.

Once we were back to our hotel and the sun was setting, we all headed down to the creek with our 6 purple balloons and a Sharpie pen. We all took turns writing on our balloons. I’m sure it was quite the sight the 5 of us, all huddled together, writing our thoughts to you. At first Quinn only wrote a couple of things. It went a little something like this:

“I miss you, Ronan. I love you to the moon and back.”

But then he said, “Wait! I need to write more!” It ended up being a novel for as much of a novel that would fit on one purple balloon. He said some other things that I tried to read out loud, but I started choking on my tears as I read his words.

“I wish you were here. I was really looking forward to watching you grow up and play baseball and basketball. I miss you.”

Liam’s words went a little something like this:

“Ro Ro. I miss you. I am so proud of you. You are so strong. I love you.”

Your daddy wrote his words, I wrote mine, and Poppy wrote hers;). We went down to where there was a clearing in the sky from the trees and let our balloons go. Only Liam’s made it out of the trees. The rest of ours got caught up in the branches above. Liam was jumping up and down in excitement as if it were a competition. It made us all laugh through our tears. I’m sure you giggled, too.

We had to come back from Sedona on Friday because your brothers had a basketball tournament to play in on Saturday. It was the playoffs for the YMCA team that your Daddy has been coaching them on. If they ended up winning, they would play again that night for a chance to go to the finals and play next week at the Phoenix Suns arena. They won the first game. After it was over, we ended up taking your brothers and 3 of their friends/teammates out for pizza. It’s these happy moments that I see through your brothers eyes that keep me going. We all sat there together at a table full of boys and we gave them a pep talk about their upcoming game. There were a lot of laughs and the talking was non stop. I am blown away at your brothers and so thankful for what respectful boys they are. Not only them, Ronan but the little group of friends they have made as well. The table was full of please’s, thank you’s, Yes, Mr. Thompson, No, Mrs. Thompson, all coming from a group of 9 year olds. At one point your daddy looked at me and said, “How much would Ronan have loved all the boys’ friends?” So much, Ronan. They are the nicest boys, the hardest little workers, and just so respectful. I know you would have been in the middle of them, causing your little mischief and they would have eaten it up with a spoon.

Your brothers won both games today, Ronan. I looked at them before their last game and said, “Do this for Ro,” as I gave them both knuckles. They both smiled at me and said that they would. I sat back tonight and watched as your brothers played their hearts out and I know it was all for you. Liam had 19 of our 22 points. They were both on fire and so determined to play in the finals. I love watching them play this game so much. I love watching your Daddy coach them. He is amazing at he and is the reason they have become such good little players. He works so hard with them to make them the best players that they can be. It makes me so proud of all 3 of them. I remember how when you were so little and so freakishly coordinated at such a young age how your daddy would talk about how he couldn’t wait to coach your teams. You would have been such an amazing athlete. Our mini Pat Tillman as we used to say. I’m sorry buddy. So very sorry.

It’s late. As soon as your brothers game ended we headed home to get our things so we could head to Tucson. We didn’t want to spend your birthday tomorrow sitting around our house being sad. So, we are taking your brothers to a resort that has one of the biggest water slides in all of Arizona. We will let them run around and be crazy for you tomorrow. Tomorrow we will all do our best to celebrate you by doing something you would have loved. Your brothers are very excited about doing this for you. I will do my best to put on my bravest smile to get through the day. I have a feeling your little sister will help me out. She seems to have a knack for this already. She is already helping me so much just by being here and making me feel like I have a tiny piece of you back. Thank you so much for her, Ro.

Happy almost 6th birthday my spicy little monkey. I love you so much. I miss you. I hope you are safe. Sweet dreams.

xoxo

P.S. Happy Mother’s Day to all of you mum’s out there. I hope you have a beautiful day tomorrow and I know you all know how lucky you are. Please don’t ever forget that.

To all of my mom’s out there who are in my shoes…I know tomorrow will be rough and for that, I am so sorry. I wish you a day full of gentleness to just get through the day. Just getting through the day is something to be proud of. Here is a little lesson I have learned after going through something like this. Days like tomorrow will never get any easier. Ever. So on a day like Mother’s Day when it is supposed to be all about us, take this one day and stop trying to please other people. Take this one day and acknowledge your grief, don’t apologize for it, and do what it is that would make you the most happy on this day. For me, tomorrow isn’t about me and that makes me happy. I would much rather just spend the day celebrating my Ronan through the eyes of Liam, Quinn, and Poppy with my amazing husband. And you know what?? If tomorrow comes and I decide that I can’t get out of bed and do a thing, I know I am surrounded by the people who love me most in the world and they will be o.k. with that. I have learned that surrounding yourself with people who have no expectations of you, is the best way to get through these holidays that are so bloody hard now.

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I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.

Your Happy Birthday Sparkly smile. I love you.

Goodnight moon

Home. After over a month of being in and out of hospitals, between Sloan and PCH… we are home again. So sweet. Yesterday, Ronan’s ANC was only at 80… today it jumped up to 240! That is very high for just one day. Ronan’s little body is fighting so hard to come back after being beaten down so badly. After Arica, our amazing friend/nurse, told us the great news about Ronan’s ANC.. she still wasn’t sure if we could go home or not. She said she didn’t want to get our hopes up because we were scheduled for scans as an inpatient for tomorrow, so that may mean they may just make us stay the night again. My sweet friend, Fernanda, came to sit with Ronan so I could run home and shower. She texted me about a half an hour after I left to tell me the doctor came in and told her that after Ronan received a transfusion of platelets, we could be on our merry way. I was so thrilled to hear this news as I was not expecting it:)

When I returned to PCH, Ronan was sleeping and when I walked into his room I had to laugh at the snow cone tent/stand that Fernanda bought for Ronan, along with his very own snow cone maker so they could sell snow cones to the nurses. Can you even stand the cuteness of this right now?? I can’t. It was the most adorable thing ever. What an amazing heart and imagination she has. Arica was telling me that when they were making snow cones, all of the nurses were like, “What is that all that noise?” Arica said she was laughing and told them, “Oh, don’t worry.. it’s just Ro making snow cones with his snow cone machine.” Only Ronan with the help of Fernanda would pull something off like that while stuck in the hospital. The thought of the two of them doing this together makes me so happy. Thanks, Fernanda, for everything. For all your help with Ronan these past couple of weeks and hauling all of our things to my car for me today. I don’t know how I would have managed without you, my dear:)

As we were getting ready to leave PCH, we were waiting for one of our doctors, “A” to come and talk to us about the weeks upcoming events. She arrived from the clinic all flustered, panicked and excited. She was jumping up and down about Ronan’s ANC and said how amazing he was that it spiked so high in one night. Talk about being passionate about her job. I love seeing that in someone who is caring for my child. A lack of passion in life is fatal. I have always felt this way and seeing “A” as often as we do, she is one of the most passionate people I have ever come across. Makes me love her even more. She told us that one of the scans Ronan was supposed to have this week, the MIBG scan had to be delayed due to the iodine not being able to get here from Canada due to the big storm. I told her not a big deal at all, as I know the situation is not in her hands. She was also trying to figure out a way to squeeze in one of Ronan’s bone scans tomorrow with all of his other scans, so we could limit the amount of times that he has to be put under anesthesia in the next two weeks. The only problem was Dr. Maze had a certain time blocked out for Ronan’s anesthesia, and throwing another scan in cut into something else he had scheduled. His office didn’t think he would be able to do it so they were going to have to get somebody else.  Just as she was telling me this, she looked down at her phone and started jumping up and down saying, “Yes, yes, yes! Thank you!!!” She then told me, “Nevermind, Aubrey moved whatever he had and will be there to do all of the scans.” She was smiling and saying how she was going to have to bake him cookies now for this one. What a good friend and a good man he is to us. He knows how important it is to us to have him do Ronan’s anesthesia. Thank you, Aubrey…I have decided that you are first a good man, and than a good doctor ;)

Ronan had his EKG and Echo Heart scan done today just to make sure everything is working properly. He was of course a great little trooper about having yet another thing done to him. I did have to bribe him into leaving his room to go for these scans by letting him take the 5 pounds of candy that Macy sent him from New York. Thanks Mace! Nothing like a little candy straight from Dylan’s Candy Shop to get the morning started! You spoil my child rotten and he loves you all the more for it! I love you for making me laugh the entire day with your ridiculously funny 4 minute long voicemail. You have no idea how much I needed that one today:)

Home today has been heaven on earth. To have all of my boys’ under the same roof is a dream come true. I did spend most of the night unpacking our 20 bags and doing laundry. I couldn’t stand the thought of having to wake up to them in the morning and then having to come home from a long day at the hospital tomorrow to them staring me in the face. The boys helped as much as they could and Woody cooked dinner. It was a nice, normal, happy night. It feels really good to all be together again.

Ronan knows the drill for tomorrow. I have been preparing him for it all day as far as having to get up early to go back to the hospital so Dr. Maze can give him his sleepy medicine. I find if I prepare him for things, he is less likely to throw a fit. He told me tonight it’s o.k. to go back to the hospital, as long as he doesn’t have to be “hooked up” as he calls it, to his pole. I told him he would not have to be hooked up, he was just going to get his sleepy medicine for pictures and we would go home after. He is being very cooperative with all that is being thrown his way. I am so lucky to have such an amazing little boy. He never ceases to amaze me.

Tomorrow is a big day for Ro. Please keep him in your thoughts and prayers. He will have his audiology test first thing, his bone marrow scan, and then his bone scan. We know from the scans in New York, that the Neuroblastoma was not detected in his bone marrow, but we will have them rechecked at PCH and have the bone test done as well. When Ronan was first diagnosed, he had Neuroblastoma in everyone of his bones and 5-10% in his bone marrow. We know that it is now gone from his marrow, but his actual bones may be a different story. We will hope and pray that it has drastically decreased. It cannot be any other way.

Tonight, I am happy to sleep in my own bed with my little bug curled up beside me. I was able to tuck in Liam and Quinn which means the world to me now. Who would have ever thought something so little would mean so much in the grand scheme of things. Tucking in my little boys’ is the happiest place on earth for me. I am very thankful for the nights that I am able to do this and will cherish them for the rest of my life.

G’nite to all of you beautiful souls out there. Thank you for all the love, thoughts, and peace you are sending our way. Nobody said this was going to be easy, but it is going to be worth it. The love that surrounds our family is something we are so thankful for. Sweetest dreams to you all.

xoxo

I never understood before
I never knew what love was for
My heart was broke, my head was sore
What a feeling

Tied up in ancient history
I didnt believe in destiny
I look up you’re standing next to me
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
Brighter than sunshine
Let the rain fall, i don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
And it’s brighter than sunshine

I never saw it happening
I’d given up and given in
I just couldn’t take the hurt again
What a feeling

I didn’t have the strength to fight
Suddenly you seemed so right
Me and you
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

It’s brighter than the sun
It’s brighter than the sun
It’s brighter than the sun, sun, shine.

Love will remain a mystery
But give me your hand and you will see
Your heart is keeping time with me

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

Feathers, Glitter, and all things Sparkly

 

 

 

Today was a very productive day. My sweet, dear, Fernanda stopped by for a coffee drop off and a visit. She went over my “To do” list with me and helped me decide how to tackle it. We also talked about our little project we have in the works… she has an amazing business mind. More on that when we are further on down the road. Let’s just say the two of us, when Ronan is well, are going to change the world and make the most amazing things come out of this. It is a good, heathy distraction for me right now; something I am very excited about and I am so honored to have Fernanda by my side <3 It’s so amazing to me, how you know someone through the years, and then something like this happens and your relationship either truly blossoms or bottoms out. Out of this, I have found a very special friendship that had always existed, I just never knew it until now.

After Fernanda left, one of our angels who writes on my blog a lot, but I have never met before, came over to help me out with some things. My new friend, Rita, came and did the mounds of paper work that has been looming over my head like a dark cloud. It took her around 3 hours and I am so grateful for her and her organization skills. There is no way I was going to be able to tackle that project this week. My mind is all out of whack and paperwork is something that has become totally overwhelming to me. Thank you so much, R. You saved my life today:) And Ronan loved having you here! I can’t believe how openly he welcomed you into our home. I am very thankful for that.

I cleaned out our pantry, caught up on all of our laundry, paid some bills, and cleaned and organized all of Ronan’s toys. If I leave here with things like that not being done…. I will drive myself crazy thinking about it. Stupid OCD. I will feel so much better going to New York and knowing that everything is organized and put away where it is supposed to be.

Ronan was a happy little boy today. He did a lot of playing by himself while I got things done. He snuggled up in my arms and we took a good nap together. Snuggling with him is one of my favorite things in the world. He fits so perfectly in my arms. Liam and Quinn came home from school and spent it playing with Ronan. I am trying to let them soak up their time with him as much as possible. They are such good big brothers. I am so excited to spend Christmas with them in New York. I have not done a thing as far as Christmas shopping goes this year. All of the gifts, cards, “stuff,” just seems so meaningless. Woody came home all excited about the gift he has gotten for me and I didn’t mean to burst his bubble, but I told him I didn’t want anything. That is not true; the only thing I want this year is the best doctor in the world operating on my baby. And he already got me that. I couldn’t ask for more at this point. I know I am going to have to get some things for Liam and Quinn, but I think I’ll leave that up to Woody. I can’t focus on stuff like that this year. One of my most favorite things about Christmas is sending out our annual Holiday Card. Not happening this year. Makes me sad; but I’ve got bigger fish to fry. I’ll send you all one on my blog, how bout that;) Think of all the trees I’ll be saving!!

We have a pretty good plan in place for New York. Woody, my in-laws, the twins, The Kotaliks, My mom, my oldest friend, Sandy, whom I have known since I was 5, and Tricia will be coming in and out. Trish and my mom will be with me on my birthday<3 So happy about that. I’ve got a few tricks up my sleeve as I always do as far as ways we will celebrate once Ronan’s surgery is successful. One of them involves glitter… and lots of it. I’m obsessed with anything sparkly and glittery and I used to be a very fun girl. I’ve been thinking of ways we can celebrate and make this milestone something to remember in a very positive, fun way. Trish and I went shopping for hats to wear in New York and I bought a silly feather white feather headband to wear on New Year‘s Eve. Who cares if we’ll be at the Ronald McDonald house…. we will still have sparkles, glitter, and feathers galore. This is our journey and I cannot wait to say goodbye to 2010. Remember how I told you about “Earmuffs??” Or maybe stop reading here….. You know what I’m going to say to 2010?? Adios Mother Fucker! Worst year of my life. 2011 is going to be all about getting Ronan better and healthy.

I heard “Iris” by The Goo Goo Dolls on Pandora tonight. It made me think of Ronan. Cheers to you, baby boy.
And I’d give up forever to touch you
Cause I know that you feel me somehow
You’re the closest to heaven that I’ll ever be
And I don’t want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it’s over
I just don’t want to miss you tonight

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

And you can’t fight the tears that ain’t coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

P.S.  I totally heart Neil Young and  Johnny Cash. They bring me peace and sing us to sleep every night. Goodnight to all of you beautiful souls out there. Wishing you all health, peace, and happiness. Love you ALL. So thankful for all of you and how you are always keeping us in your thoughts and prayers. Ronan is a fighter, there is not a soul out there like him. I PROMISE you, he will get through this. I can feel it in every fiber of my body and soul. And through this journey, I’ve come to find out how true and right my insights are in regards to my life. I BELIEVE.

  • Instagram is my BFF

    Good Morning from Sedona! #poppy #ronan #fucancer #poppyroo #sedona #poppyhasanewbestie #francis @jcaccia Sweet dreams, little ones. #poppy #ronan #fucancer #thisroomisrad #sedona #nightynight Had to bring along this babe, too. Poppy's sissy. Can't leave home without her. @knjoy #poppy #ronan #fucancer #poppyroo #slumbersissys #sedona #nightynight
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