Just you and me

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

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

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

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

Post-traumatic stress disorder

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

Causes, incidence, and risk factors

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

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

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

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

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

Symptoms

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

Symptoms of PTSD fall into three main categories:

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

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

2. Avoidance

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

3. Arousal

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

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

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

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

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

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

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

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

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

xoxo

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

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!!

A breath of fresh air

I spent today enjoying everything to the fullest. Woody and I made a big breakfast together for the boys, Mimi and Papa; who came over to take Liam and Quinn to get their flu shots. I ran some errands alone which was nice. I then met Woody over at The Village to watch Liam and Quinn’s basketball game which was the highlight of my week. Danielle, her amazing boyfriend, Dave, and Trish came to watch as well. It was such a great game and I found myself laughing and cheering the entire time. The twins played awesome… it was like a switch flipped and all of a sudden they get it. They were hustling up and down the court, throwing great passes, guarding their guys, they each made a basket and played with the most heart that I have ever seen them play with. I was grinning ear to ear watching them and seeing how much fun they were having. The most beautiful sight that I have seen in a long time. I loved sitting with my sweet friends too and hearing them laugh and cheer right a long with me. Liam and Quinn were so excited to have an audience<3 I wish I would have recorded it all but it will forever be engrained in my brain. There is nothing like watching your kids flourish at something they love. My heart is sooooo happy today. I feel like a whole new person…. well, maybe more like the older version of myself;  someone that I love and miss so very much.

After the basketball game, Trish and I went to Chestnut Lane for some lunch and girl talk. There is nothing like time with my bestie. It was nice to catch her up on some things that have been going on and to get to talk about our Marisa who just had her sweet baby boy, Max. I am so excited to see her and meet the newest little member of our inner circle. I am going to try to go to the hospital tomorrow to check in on them and to give Marisa the big hug that I have been saving for her. I’ve been missing her so much. Trish and I ran a couple of errands over at the mall and then we parted ways. It felt good to be out today, with her by my side. I even managed not to be bothered by being out in public. I am feeling stronger than I have in a very long time. I’m chalking it up to a very big weight being lifted off of my shoulders and the fact that Woody and I have really been enjoying each other lately. I have been missing spending time with him, doing all the little things that we used to do. Even just cooking breakfast together this morning was so therapeutic.

Tonight Mimi, Woody, and I all made a big turkey dinner together at our house. The boys played board games with Papa while we got everything ready. Ronan was pretty tired but ran around the entire night. He didn’t nap today so he finally fell asleep around 8. His energy amazes me. He had a few tantrums today…. I hate seeing him so angry. I know that anger is usually a secondary emotion so I am wondering what the first one is that he is feeling…. could be fear, or even pain. I hope he is not hurting physically and that is what is causing him to be so mad. I ask him all the time if he is hurting and he always tells me no. He has such a high tolerance for pain though so I can’t always trust what he says. I just pray that his little body is not hurting… that would break my heart. He is going through enough with everything and if he is feeling any of this, well, I don’t even have words to express how that would make me feel. All I can do is pray, watch him, and take the best care of him that I possibly can.

I am going to curl up with Woody and watch Saturday Night Live in a bit. Auntie Karen’s close friends daughter, Emma Stone, is hosting tonight. (GO EMMA!!!)You all should watch if you stay up that late. She is such a talented little thing and I love watching her in movies. She was amazing in “Zombieland.” One of my favorites:)

I hope you all have a beautiful weekend full of love and thankfulness. It is easy to get caught up in things that are not worth our time or energy, but it is even easier to just let some things go and live a life full of being true to ourselves. I know days like today are not going to come along very often for me for a while. I am going to have more bad days than good; which is a huge reason why I will forever cherish and remember today. The feeling of complete happiness is so easily taken for granted, but so easy to achieve when you know what really matters most in life.