Oh, Hey Cancer! Fuck you! Seems like an appropriate title tonight.

Ronan. Your daddy left for Vegas. This means I get to hold down the fort while he is away. Normally this wouldn’t be a problem in the pre Ronan is not dead days. Now, doing things like keeping your brothers entertained on their fall break, solo, is hard fucking work. Don’t get me wrong, they are easy boys. And if you were here, I have no doubt we would be off doing things like going to the Pumpkin Patch, shopping for Halloween costumes, and having lots of adventures. You know what is right around the corner. Your most favorite holiday. Halloween. It used to be my favorite holiday, too. Now it just makes me extremely sad. Last year, I dressed up like a dead zombie because that is how I felt. This year, I’m not feeling like doing anything except burying myself in a big hole in our backyard. I have not carved pumpkins with your brothers yet, or gotten their Halloween costumes. We have been talking about what they want to be. Of course I always wonder what you would have been. In my mind, you would have been a different Star Wars character every year for the rest of your life. I don’t think you would have grown out of your Star Wars phase just quite yet.

Today, Liam and Quinn’s fall break consisted of therapy. It was Liam’s day to be with Dr. Rachel. It’s been a while since he has seen her. I went in and talked to her before hand. I told her that I have been having to talk about your last days a lot, with everything that I have been doing. I told her I was worried because we had not really talked about it in depth with your brothers. We agreed that she would dig deep today, without pushing Liam too much. I waited in the waiting room with Quinn. My mind was racing and of course my heart was breaking thinking of the conversation that was taking place in the next room. What a great way to spend fall break, huh. Liam came out after an hour, his little eyes all red. I got up and left him out in the waiting room with Quinn while I went to talk to Dr. Rachel about how the session went. I listened to her tell me how Liam talked very openly about the sadness he feels over losing you. How during the time when you were dying he told himself to be a good brother, to be brave, to be strong, and how he wanted to be somewhere else. He told Dr. Rachel he told you the same things. He cried a lot when talking about all of those things. She told me he has a higher emotional intelligence than most kids his age. How well he was able to verbalize everything that he was feeling. I wiped away my tears while listening to this. I felt like punching the wall and screaming, “WHY THE FUCK DID THIS HAVE TO HAPPEN?!! TO THE BEST BIG BROTHERS IN THE WORLD?!!!” I got up and told Dr. Rachel thank you. We decided that it was best for now to let Liam talk about these things in his safe space with Dr. Rachel. I asked Liam in the car if he wanted to talk about anything. He told me he did not, so I left it at that. I am just thankful that he is opening up to someone.

I picked up a friend of your brothers so we could have a play date. I took them over to The Village to play basketball, football and swim. I was sitting outside, under the shade of course with my dark sunglasses on because I have developed an allergy to the sun called, “I fucking hate you.” I was watching your brothers and their friend swim. I was trying not to get too sad that there were 3 boys in the pool and one of them wasn’t you. Just as I was sitting there, a little hummingbird came flying right up to my face. It stayed there for a few seconds. I smiled. I thought of you of course because little hummingbirds don’t happen often in my life, but when they do it is always when something really important or sad has happened and I need a little sign that you are around. 3 minutes later, my Twitter alert went off. Somebody had tweeted me that our friend, Super Ty had passed away. My stomach dropped to the floor. I sat there for a few minutes. I didn’t cry right away. I thought about the hummingbird and how that was your way of telling me you were going to take care of Ty now. Hot tears rolled down my cheeks as I watched your brothers laugh, splash and play. I sent your Sparkly a text about Ty because he knows how he was our roommate at Sloan. I told him that he had passed away and how cruel life was. I told him about the hummingbird too and how I knew it was a sign from you and how you would now watch over Ty forever. He told me that he knew that you would, too. My tears didn’t stop for a few minutes. I’m so sorry to Ty’s mama, daddy, little brother and to all who knew and loved him. I’m so sorry to Ty. Will this cruel world ever get better, Ronan? How many kids is it going to take, before people start paying attention to the point where everyone finally says, enough is enough? When is this sick cycle of kids dying over and over and over from cancer going to end? When are people going to stop looking away because it can’t happen to their child, right? I know I am making a lot of headway with everything we are doing, but some days I feel like how long is this going to fucking take? And what is it going to take for everyone to wake up and join in this fight with me? Am I going to have to organize a freaking protest or something? When will our government really step up to the plate and what can I do to make this happen? Somebody get me on the phone with Obama. Seriously. Too many parents are losing kids. Too many kids that are still here, will suffer for the rest of their lives. They deserve to stop being overlooked. They deserve better treatments and options. I don’t want another mom to have to sit down with their other children and let them look at the ashes of their dead brothers body. I am beyond heartbroken and if things continue to stay this way, I just don’t know what I will do. Really, how hard do I have to fight? I feel as though it is all I am doing, 24 hours a day. Will things ever get better? If my post seems hopeless tonight, it’s just because I am so very sad over Ty, Ronan. I hope you two are both playing together in your super hero capes. Take good care of him sweet boy. It shouldn’t be this way.

I’m going to end this here. Your brothers had a good day. I tried my best but as always I carry so much sadness around in everything I do. I miss you so much. G’nite Ro baby. Sweet dreams. I love you to the moon and back. I hope you are safe.

xoxo

P.S. Hey Cancer. Fuck you.

There is nothing sweeter than kissing the bald head of a cancer child

You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!

Adios 2010… worst year of my life

I could
not be happier to see this year end. I told you what I was going to
say to 2010…. Adios Mother Fucker!!!! It started off great… and
I made some amazing friends whom have proved to me that they are
worthy of being in my life. For that, I will be forever grateful to
2010. But that is about the only good thing to come out of this
year. August 12, 2010 will forever be etched into my brain as the
absolute worst day of my life, and 2010 will forever be the worst
year of my life. I have never been so happy to put a year in the
past. 2011 is going to be Ronan’s year. His year of healing and
getting all better. We still have a long way to go to get him to
this point… but nothing will ever be as awful as having a doctor
tell you that your son has Stage 4 cancer. Things can only get
better from here. Bring on 2011! We cannot wait to see what it has
in store for us. Today, Liam, Quinn, Mimi, and Papa all returned to
PHX. It was a brutal day. I begged Woody to let the boys’ stay with
us and miss a few days of school. He wasn’t having it and I know it
really wasn’t a good idea due to what Ronan is about to go through;
but I am going to miss them so much. I cried all morning and was
bawling as we put them in the car to go to the airport. I had my
big sunglasses on so I don’t think they noticed. Well, Liam
didn’t.. Quinn of course did. Ronan didn’t really understand what
was going on, he just kept looking at me and saying, “But I’m going
to miss them so much.” I told him we would be home with them soon.
We spent the day spoiling Ronan rotten. We took him to our favorite
pizza place, right around the corner from the RMH and he ate a huge
lunch. We then came back here and played for most of the day. Ronan
and I curled up together and took a big nap. We were both tired.
Woody snuck out to go record shopping. As soon as he got back I
headed out for my dark Central Park run. It was a little scary
tonight… not a lot of people out. I only ran about 6 miles but it
felt good. Wasn’t too cold and it was fun to see all the people out
and about all dressed up going to their New Year’s parties. I tried
to think a lot about Monday and am trying my best to prepare for
what we are about to go through. I am trying to gather all of the
strength I have because I am going to need every ounce of it.
Tonight, Woody, Ronan and I had our own little party in our room. I
covered Ronan’s head in glitter and he put it all over my eyes and
face for me. I wore my silly feather headband and Ronan told me I
looked pretty. We ate cheese and crackers, Woody had his
beer and bought Sangria across the street for us as well. We
watched a Pearl Jam concert and Ronan was dancing and laughing the
entire night and has now decided he would like to be a rockstar
when he grows up. He is obsessed with Neil Young and “Rocking in
the Free World” is his favorite song. We did a lot of chasing him
around the RMH, going up and down the elevators. After we wore him
out, Woody and I put in “Easy A.” It was in my stocking from Woody
for Christmas. Love that movie;) Woody liked it too; it was the
first time he had seen it. He’s a tough sell too so I was
pleasantly surprised. Ronan is asleep, Woody is asleep, and I am
wishing I was asleep. Kind of want to stay up until Midnight, West
Coast time so I can make another New Year’s wish. No resolutions,
just wishes this year. I think you all know what I’ll be wishing
for. Cheers to 2011! I hope this year is filled with health,
happiness, and love. G’nite sweet angels. xoxo

Here’s to you, Wooddawg. 9 years later, baby.

Today, 9 years ago, I was married to my best friend, the
love of my life, my Woody. The only person who has ever truly had
my heart. It was the happiest day of my life; until today. Today is
the happiest day of my life in a different way; a bittersweet way.
Never in a million years did I think that 9 years after I married
my husband, that I would be crying tears of joy because my baby’s
bone marrow scan came back as clean. Yes, that’s right, you heard
me, CLEAN! When Ronan was diagnosed, his bone marrow was filled
with 5-7 percent of Neuroblastoma. Now, it has come back as gone.
What does this mean you ask? It means a lot of things. It means
that the chemo is working, it means that the Neuroblastoma is going
to be easier to get rid of, it means that Ronan truly is kicking
cancer’s ass, and it means that we are once again, filled with so
much hope for our baby of ours. He truly is a force to be reckoned
with. Nothing can stop this baby, not even something as evil as
cancer. This is the best news we could have received today; the
best anniversary gift I could have ever asked for. It is truly a
miracle and proof that all of our prayers, love, energy, and
whatever else is out there, is working in our favor. We met with
Dr. La Quaglia today. He was serious and to the point, but also as
soon as he walked into the room, I knew. I knew that we were in the
right place and I knew that there is nobody in the world that I
would trust with the life of my child. It was like he had a circle
of angels surrounding him. I took one look in his eyes and the
trust was formed instantly. He of course told us how serious the
surgery was; he had to make sure we were aware of the risks. This
was hard for me to hear; but I know legally, he has to tell us
these things. He said on a scale of 1 to 10, 10 being the worst,
Ronan’s Neuroblastoma surgery was about a 3. I asked him how long
he anticipated the surgery taking and he looked at me and said, “As
long as it takes to do a perfect job.” Done and done. I know this
man is a gift from god and the only person that should be operating
on my child. With that said…. PLEASEPLEASEPLEASE…. spend all
day Monday thinking and praying for Ronan. He will need it and we
will need it. I have never been more scared in my entire life. This
is a huge deal… he has to get through this. Just imagining my
baby going through this makes me sick to my stomach. But he is a
fighter and has proven that he can handle anything. He loves us all
too much to leave us.

Tonight, I am asking that you keep a little
girl in your prayers named Ashley. Her mom got in touch with me a
few months ago and her daughter, who is 7, was diagnosed about a
week after Ronan. Today, as Ro and I were trecking through the snow
to Sloan Kettering, I heard her mom yell out my name. I turned
around and there she was, Nicole, on her way to Sloan as well. She
introduced herself and said she has been following my blog for
quite some time now. Ashley, will have her surgery tomorrow, by Dr.
La Qualia. I know she is going to be fine, but as always, extra
prayers help. I will keep you posted and I will be thinking of her
all day. I saw Ashley today. She has the exact same sparkle and
strength in her eyes that Ronan has. She is going to be fine;
another beautiful survivor.

So, New York has completey healed my
love for running. It truly has become my therapy again. Last night,
I was crawling out of my skin, dying to run since it had been a day
since I had gotten to. I headed up to Central Park and ran about 6
miles on complete ice. It was dangerous, crazy, and completely
cathartic. Tonight, I did the same thing as well. Right now,
running is the only thing that is saving me. I don’t have my
therapist here…. and I so need to do a phone conference with her.
Running is my saving grace for the time being. I am going to come
back here and make the NYC marathon my bitch. Mark my words.
Today, I got to meet the new love of my life, Miss Macy:) She is somebody
that emailed me awhile back on my blog to say that she lived here
and if I needed anything to please call her. She is around my age,
and we have been keeping in touch for awhile now. Finally, I was
able to meet this little angel of ours. And what an angel she is.
She came through the RMH, all bundled up in her fur, toting gifts,
and as gorgeous as can be. Ronan and Quinn instantly fell in love
with her and I did too. She stayed for a couple of hours and we
entertained the boys the entire time. Ronan was flirting away, up
to all of his usual tricks. Macy could not have been more fun and
just what we needed to brighten our day. Thanks, Macy… as I said
before, I feel like I’ve known you forever. I can’t wait to
celebrate my birthday with you.

So, tonight, I sit alone at some
amazing pub by the RMH, paying bills and blogging away on my
anniversary. Sad but true. I would of course, rather have Woody
with me but he so sweetly understood that I needed to get out.
INDEPENDENCE…. ugh. it is so important to me. I need this time to
do my thing…. blog, pay bills, be out in the real world
surrounded by people laughing and who have no idea what the fuck
cancer really means in life. Everyone here is laughing, drinking,
playing trivia, and living life to the fullest. Just as they should
be. Hey, it wasn’t so long ago that I lived this carefree life. I
will never take it for granted again. I used to be exactly like
these people in this bar. And I will be someday again. Someday, I
will be back here, with my husband, just enjoying each other and
not obsessing about Ronan’s cancer. Love you all. Sweetest dreams.
xoxox

This is dedicated to Ronan… thanks Linds. Because baby, he
is our firework. Do you ever feel like a plastic bag, drifting
through the wind wanting to start again? Do you ever feel, feel so
paper thin like a house of cards, one blow from caving in? Do you
ever feel already buried deep? 6 feet under screams but no one
seems to hear a thing Do you know that there’s still a chance for
you ‘Cause there’s a spark in you You just gotta ignite, the light,
and let it shine Just own the night like the 4th of July ‘Cause
baby you’re a firework Come on, show ’em what you’re worth Make ’em
go “Oh, oh, oh” As you shoot across the sky-y-y Baby, you’re a
firework Come on, let your colors burst Make ’em go “Oh, oh, oh”
You’re gonna leave ’em falling down-own-own You don’t have to feel
like a waste of space You’re original, cannot be replaced If you
only knew what the future holds After a hurricane comes a rainbow
Maybe you’re reason why all the doors are closed So you could open
one that leads you to the perfect road Like a lightning bolt, your
heart will blow And when it’s time, you’ll know You just gotta
ignite, the light, and let it shine Just own the night like the 4th
of July ‘Cause baby you’re a firework Come on, show ’em what you’re
worth Make ’em go “Oh, oh, oh” As you shoot across the sky-y-y
Baby, you’re a firework Come on, let your colors burst Make ’em go
“Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own Boom,
boom, boom Even brighter than the moon, moon, moon It’s always been
inside of you, you, you And now it’s time to let it
through-ough-ough ‘Cause baby you’re a firework Come on, show ’em
what you’re worth Make ’em go “Oh, Oh, Oh” As you shoot across the
sky-y-y Baby, you’re a firework Come on, let your colors burst Make
’em go “Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own
Boom, boom, boom Even brighter than the moon, moon, moon Boom,
boom, boom Even brighter than the moon, moon, moon

Christmas 2010

This  post was from last night. We have been having Wifi problems at the RMH. That’s why there have been lack of updates. I’ve missed you all and hope you had a great night last night. We had a beautiful time together and now the city is covered in a blanket of snow. Below is what I wrote last night. Love to you all.

Silent Night…. Holy Night…. All is calm… All is bright….

This is the lullaby that I have hummed to Ronan since he was born. I’m not sure why, but I hum or sing it to him every night before he goes to sleep. Since he was diagnosed, I’ve stopped singing it to him. I’ve taken the most beautiful song, and turned it into something crazy in my head, telling myself that I don’t want it to ever be a silent night because that means my baby will be up in heaven and not with us anymore. I’ve only told a few people about this… Tricia, Marisa, and Charisma. Charisma is the one who told me she understood, but really thinks the song is not about what I have turned it into. It has always been my favorite Christmas song; until now. What we are going through is so scary to me that I have taken one of the most beautiful things and turned it into something ugly and sad. Sometimes I feel as I don’t have control of the feelings and thoughts I have. How can I?? My baby has cancer; nothing will ever be the same.

We had a great Christmas morning. We stayed in our room, opened up gifts, and the boys could not have been happier. We were all together as a family and it was such a beautiful thing. As they were busy playing with their toys, I bundled up and braved the 29 degree temperature and headed out for my Central Park run. I ended up running 10 miles and it was beautiful, brisk, hard, and just what I needed. Before I came on this trip, I was telling a good friend of mine how I came here to run the NYC Marathon a couple of years ago and how I would never do another one again because it was so hard. He looked at me with a sparkle in his eye and goes, “Oh, you’ll do another one…. Just you wait and see.” As I was on about mile 7 tonight, I thought to myself… I am so coming back here when Ronan is all better to do this marathon again. I imagined Ronan waiting for me at the finish line, so proud of his mommy. I will run it for him, and for NYC. This is the city that is going to heal my baby and is healing his mommy as well. There is no place I’d rather be right now. Funny how this city feels like such a second home to me already. That is because it is full of all things magical, miracles, and it is all about taking that tumor out of Ronan. January 3rd cannot get here soon enough.

Tonight was bittersweet. I have been doing o.k. here at the RMH, but tonight my emotions got the best of me while we were doing the whole Santa thing with the boys and all of the other families here. They do such a beautiful job and are so generous with the gifts. I was standing up next to Woody and the boys, just kind of soaking it all in. Then the tears started and I couldn’t get them to stop. It was all too much. The room was full of the most beautiful kids, who are fighting so hard for their lives, but are still so happy. Then there were my 3 babies sitting there together; like it was just another Christmas. Woody pulled me down next to him and let me cry on his shoulder and tried to comfort me by whispering to me how lucky we are to all be together and that’s all that matters. He keeps telling me that together, we can get through anything. Team Thompson, as he likes to call us. He is such a good man. After awhile, the tears stopped but after the boys’ got their gifts I took Ronan up to his room. For one, he wanted to go, but two, I felt an anxiety attack coming on. Still not doing well in big social situations I guess.

I am fighting everyday to be brave and strong. Sometimes, this all still becomes too much. This will never become easy for me, everyday is a struggle. Imagine living everyday of your new life full of hurt, and watching everyone around you hurt as well. It is so hard, so unfair, but I know I just have to keep moving forward. I’m very thankful to be married to such a strong man. I would fall to pieces every second of the day if it were not for him.

That’s all for tonight. Time to cuddle up to my little boo and kiss that sweet, bald head of his for the millionth time today. He is our Christmas miracle, and he is the sweetest Christmas gift I have ever received. He is teaching us so many lessons along the way.

Love you all. Hope your holidays were so very, very blessed.

xoxo

Treasure each day, because you don’t know how many you’re going to be given

There was a reason we didn’t start chemo this week. It was because we needed to be together this Thanksgiving as a family. It truly was one of the best Thanksgivings I’ve had in my life. Woody and I started off the day by making a big breakfast for the boys’ and Uncle Ron came over to join us. I then headed out for a good 5 mile run. It was fabulous. The sun was shining, people were out and about, and it made me feel so happy. I came home, showered and got the boys’ ready to head over to the Kotalik’s for our Thanksgiving feast. Karen, of course outdid herself. The food was to die for and the company could not have been better. I am so lucky to call them family. We spent a lot of time outside playing football and basketball. Ronan was entertained by Karen’s youngest daughter, Olivia, who is such a doll with Ronan. She adores him and is so good to him. It was sweet to watch. I got to spend some time with Liz, who I call my soul sister. She is almost 21, and is a huge part of my heart. We sat and caught up for a long time. She will be coming to New York as well and is so excited. I am so lucky and blessed to have the Kotaliks… Mimi Kay has the best friends.

We took the time on our drive over today and each said what we were thankful for. I said I was thankful for this moment in time, for my boys and Woody, and our amazing support system.Woody said he was thankful for being together and how proud he is of Liam, Quinn, and Ronan who are growing up to be such amazing boys. Quinn was thankful for our family. Liam was thankful for Christmas to be the next holiday and for each other. Ronan was thankful for Star Wars:) So cute.

Liam and Quinn are in a Fantasy Football league this year and as of now, they are the number one team. If they win, they win 600 dollars. Craziness! Tonight, we were talking about what they would do with the money if they won and Quinn goes, “Maybe we could donate it to Ronan’s Foundation.” I wanted to melt on the floor right then and there. He is so thoughtful and kind. What a big thing for a 7-year-old to think of. It made me so proud of him.

I am thankful for so many things everyday. I still get sad about what we are going through; but we are getting through this one day at a time and counting our blessings. We finding so many little things that make our lives happy. I am trying my hardest to stay positive and I mostly get sad for Ronan, Liam, and Quinn. It’s hard to watch your babies worlds change at such a fast pace. You can’t ignore the pain in their eyes…. but we have a lot of talks about our feelings and I think that helps. I talked to Quinn tonight about what he is scared about. He said he was scared that he was going to get cancer too. I assured him that he will not, and neither will Liam. In the back of my mind, I was thinking, what do I know…. if it can happen to Ronan, it can happen to anyone. He felt better after I promised him he was not going to get it. I know he sits and thinks about these things and it’s my job to fish it out of him so we can talk about it. I feel like I’m doing a good job with that and so is Woody. I can’t do this alone. I thought for a long time that I could and it was easy to try to tackle everything by myself. But I missed my best friend too much. I need Woody and I need us to be a team. We are again; and things have gotten so much easier. I couldn’t ask for a better man to go through this with. Once again, I am beyond blessed.

I’ve been thinking all day about all the beautiful things in our life. The fact that we have 3 boys is a miracle in itself. Those 3 boys, are everything to us. I am thankful that after being with Wood for 11 years that he is still my best friend and the man I love. Some people never know that feeling. I am thankful that Woody still looks at me like the 21 year old girl he met 11 years ago. He still loves and adores me and treats me like I am his princess. I am thankful that we are still each others true loves. I am so thankful for Woody’s parents and I don’t know how we would manage going through this without them. I am thankful for all of my family. There is not a day that goes by that I don’t miss them. I am thankful for all of my friends. They are the truest and purest souls put on this planet. They would not be in my life if they were not. I know for a fact, that I would not be able to get through this without them. I am thankful for the pure kindness of strangers. I had no idea how beautiful people can really be…. without having agendas. I am thankful for everyday that I get to look into Ronan’s beautiful blue eyes and how he loves to kiss the spot on the back of my neck and I do the same to him. We call it our sugar spot. I love it when he lets me give him “sugar.” The days that he smiles and is happy mean everything to me. His good days make all the bad days go away. I never knew I could love so deeply in my life. I am so full of love for my family that I feel like I could burst.

It is our love that is going to get us through this. This little boy is not going anywhere. When I was running the other night I looked up at the sky and prayed and prayed for Ronan to beat this. He belongs with us forever.

P.S. To my Liz Kotalik. I love you like a sister. I am so proud of you and the amazing woman you have become. Soul sisters forever and ever. My heart belongs to you.

Have I mentioned how much I love music? It feeds my soul. Cheers to The Pretenders tonight. Love you all. Sweet dreams and all the blessings in the world.

Oh, why you look so sad?
Tears are in your eyes
Come on and come to me now
Don’t be ashamed to cry
Let me see you through
‘Cause I’ve seen the dark side too

When the night falls on you
You don’t know what to do
Nothin’ you confess, could make me love you less

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

So, if you’re mad, get mad
Don’t hold it all inside
Come on and talk to me now

Hey, what you got to hide?
I get angry too
Well I’m a lot like you

When you’re standing at the crossroads
And don’t know which path to choose
Let me come along
‘Cause even if you’re wrong

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you

And when, when the night falls on you, baby
You’re feelin’ all alone
You won’t be on your own

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Take me in, into your darkest hour
And I’ll never desert you

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Yeah

Won’t let nobody hurt you
I’ll stand by you
I’ll stand by you
Won’t let nobody hurt you

I’ll stand by you
No, no, no, no, no
Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you
I’ll stand by you

Have you ever looked fear in the face and said I just don’t care?

Ro is still in the hospital due to a low ANC count. His numbers jumped up today, which tells us he is on the up and up, but they still need to get up higher before we can come home. He is in a lot of pain due to developing Mucositis which is a side effect of the chemotherapy. It is kind of like ulcers in the mouth. Although we cannot see it inside his mouth, I can tell they are more along the lines of down his throat. He has not been wanting to eat anything so he is getting nutrition from his broviac line. We won’t be able to go home until he starts eating and everything is healing. It will take his ANC levels to come up to heal the sores. It has been a rough couple of days at the hospital and I needed a break. I called in Auntie Karen tonight so I could sneak out and Woody and Quinn came and relieved her after the ASU game. They are sleeping there tonight. I came home and caught up on laundry and straightening up the house. It feels good to have all of that done. I will have to be back at the hospital early so Woody can run home and meet with a client. It’s one big shuffle, but I am grateful for the break and quiet tonight. Hopefully, Ronan will be feeling better tomorrow and we can bring him home in the next few days. Thanks for keeping him in your thoughts and prayers. It’s hard to see your baby in pain when there is nothing you can do about it.

So, my last little post caused quite a stir in regards to a comment. I don’t want to touch too much on that but I just do want to say that all opinions are welcome here, good and bad. Everyone is entitled to their opinions but nobody is entitled to judge me. Yes, I may get on here and rant and rave about things that I am upset about and how I am feeling, but the reason I do this is because when I am living my new life, I am strong and brave and most of the time nobody even knows when I am breaking down. I only choose to let a few close friends see this side of me. Somedays I have really hard days and yes, Ronan and my twins see me cry, but I am not the kind of mom who is going to hide my feelings from my kids. I grew up in a family that feelings were not really talked about and everything was always “fine.” I hope my boys will grow up knowing that we are a family who shares all of our fears, feelings, and opinions. I don’t want them to ever think it’s not o.k. to express how we are feeling. As far as my “personal relationships” suffering… I really disagree with this. If anything they have gotten stronger. I am working on making them stronger. The people that have bailed out on me and our situation, were never real friends anyway. I have been nothing but honest in the way I am feeling and if they can’t handle it, then they are not meant to be in my life. The people who have had their feelings hurt, know that they can talk to me and we can work it out because they are the people who truly love me. To walk away from me and all of this…. well, I think that speaks for itself.

On a happier note…. I have made some new beautiful friends on this journey. We are in a club all our own and I feel so LUCKY to be part of this club. The fucking cancer sucks club has some of the most beautiful souls I’ve ever met in my life. These people know who they are, and they are family now. I am very thankful to have their shoulders to lean on. And I know they know I am there for them too. To my Laurie tonight. I love you. I love your tears, your honesty, your smile, your Jack, and the friendship that we will have for the rest of our lives. You are the light of my life and one of the brightest stars in the sky<3<3

Pink: If God is a D.J.

I’ve been the girl with her skirt pulled high
Been the outcast never running with mascara eyes
Now I see the world as a candy store
With a cigarette smile, saying things you can’t ignore
Like mummy I love you
Daddy I hate you
Brother I need you
Lover hey, “Fuck you”
I can see everything here with my third eye
Like the blue in the sky

If God is a DJ
Life is a dance floor
Love is the rhythm
You are the music
If God is a DJ
Life is a dance floor
You get what you’re given
It’s all how you use it…

I’ve been the girl with her middle finger in the air
Unaffected by rumors, the truth: i don’t care
So open your mouth and stick out your tongue
You might as well let go you can’t take back what you’ve done
So find a new lifestyle
A reason to smile
Look for Nirvana
Under the strobe lights
Sequins and sex dreams
You whisper to me
There’s no reason to cry…

You take what you get and you get what you give
I say don’t run from yourself, man, that’s no way to live
I’ve got a record in my bag you should give it a spin
Lift your hands in the air so that life can begin

If God is a DJ…If God… say If God is a DJ, Then life is a dance floor so
Get your ass on the dance floor now

My mama

I had a good talk with my mama today. I know I don’t mention her on this blog often enough and I’m not sure why. Every source of strength, hard work, compassion, and love that I have inside me as a person, I got from my mom. You want to know why and how I am such a good mom? It’s because of her. She raised me to always make the best of things, always give people the benefit of the doubt, and that your family comes first. She is the hardest working woman who never asks for a thing; but is always there to help others. I picture her in my head at least a few times a day, working in her butt off in her cafe, all while supporting us and what we are going through by talking about us, thinking about us, and loving us. She eats breathes and sleeps for my brother and I; and for her Grandbabies. I couldn’t ask for a better mom and it breaks my heart that she is there and I am here; especially when I can tell in her voice that she wants nothing more to be a daily part of being here and helping in any way she can. When I am having a hard day, or I am feeling sorry for myself, I often think of my mom and how strong she is. It helps me to pick myself back up and move on while thinking about all of the positive things that are surrounding us right now. I wouldn’t be who I am today if it weren’t for my mom. I cannot wait until the summer when Ronan is in remission and we can do what we do every summer which is spend some time in Washington with my family. It is one of the things my boys look forward to most in life. Our summers in Washington are magical, innocent, and pure. There is nothing like watching the simplicity that comes from my boys spending time with my mom and Jim.

My mom knows that sometimes I am not so good with words and expressing how I feel to her, but I feel like after going through this, it is becoming easier for me. My mom also knows when I don’t have the words; not to ask or push me. She knows when the I need her most, I will ask. She is silently walking through this with me and respecting my boundaries which is something that I really need right now. So even though I don’t say it enough; I love my mom very much and am thankful for her everyday of my life.

Today was a quiet day around here. I swear I went into a sleep coma for about 3 hours. It was a combo of staying up way too late last night and being wiped out from the hospital. I feel like I got caught up on a little sleep which is always nice. We spent the rest of the day watching football and playing outside. I even went for about a 4 mile run. It was so cool and perfect out tonight and I am happy that running is finding it’s way back into my heart. It was just what I needed tonight. Ronan has been running around like crazy, wrestling with his brothers and just enjoying being a 3 year old. I spent about an hour on the top bunk of Liam’s bed tonight just reading to all 3 of my boys. Then Quinn read a couple of books to us. It was priceless and some very special time together that we all needed. Ronan seems to be feeling well but I know next week is going to be when his levels drop. He is usually wiped out after day 13 of being done with his chemo treatments. Today is day only day 6. They say the chemo hits them the hardest 7-14 days from the time you start it. We go to the clinic Monday and Thursday and I will be keeping a close eye on him. Hopefully we won’t have another bloody nose disaster.

I hope you all have a blessed weekend full of laughter and love. Squeeze your babes extra tight<3 Goodnight, friends.

Happy Halloween!

Hope you all had a great Halloween! We had a wonderful one… Ro was able to trick or treat and everything! We started off at our friends, The Tarbell’s house for some great company and delicious homemade pizzas by Mark himself. After that, we went over to our friends, The Willits for some trick-or-treating. Gay drove about 12 of us around in a golf cart for a good couple of hours. Wheehew!! It was a golf cart full of all boys! Such fun!! Ronan kept right up and was running all around until left there around 9:30. It was late for a school night, but everyone was having such a good time that it was hard to wrap it up. Thank you to our wonderful friends tonight for celebrating with us. It was very special to us to have Ronan out and about. Tomorrow, we start Round 4 of his magic medicine. We will be in the hospital until Thursday or Friday…. assuming all goes well. Please keep our little guy in your thoughts and prayers… hoping he will get through this round as easily as all of the others.

We’ve had a great break from the hospital but it’s time to knock this round 4 out. One more check mark off our little guy’s list. He is not psyched about having to go to the hospital tomorrow, but hoping he will not put up too much of a fight. I hope you all had a wonderful Halloween and enjoyed your kiddos to death. Goodnight to our army of angels out there.

xoxo

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)