I live my life for you

Ronan. Ouch. Ouch doesn’t come in the form of you hurting from your broviac dressing changes we used to do every week. Ouch doesn’t come in the form of the pokey shots we used to have to give you after you finished your round of chemo. Ouch now comes in the form of living this life. This life without you. It comes in seeing all of the little kids who are your age running around the beach. It comes in the form of seeing the beach towel today that had your Paul Frank monkeys all over it. It comes in the form of my obsession with taking pictures and you are now missing in every one of them. You are just gone. I’m waiting for you to appear in a picture of your brothers, right in the middle where you used to always be. It is beyond weird not having you around to take pictures of, Ronan. You were such my little ham and I used to absolutely die over talking pictures of you and your big blue eyes. I miss you so much it hurts. The pain is not getting any better. I still think it is getting worse as the days go on and I watch everyone else in life with their beautiful kids. I sit and wonder to myself, do they know how lucky they are? How lucky they are to be able to just hold the hand of their little ones to cross the street? How lucky they are to deal with a tantrum or go through the terrible twos? Those people I watch from my new set of eyes are so unbelievably lucky. I find myself sitting back a lot now and just absorbing my surroundings and wishing for you. I want to scoop up every little person I see and tell them I love them, because I do. They all remind me of you in different ways. The little boy with the blue eyes, the little girl with the mischievous smile, the laughter and innocence that these little people are so blessed to have and they don’t even know it. And they shouldn’t know it; but their parents should. I hope so much that all these people who are touched by your little life now take the time to be grateful for having something so simple and beautiful. I hope they kiss and love their kids so much more now. That is my wish for you, Ronan. After you passed away, I sat and kissed your little cold lips about a dozen times. I wanted to sit in that room with you and kiss you forever. Instead, I now get to sit and cry about how I will never be able to kiss your little lips again. You had the best lips too. They were so full and soft. Your daddy and I were talking about you the other day and how unbelievably perfect you were. I keep thinking you were too perfect for this world? Your beauty was unlike anything that I have ever seen before. I don’t understand why you had to be taken away from us. I will never understand this which is why something has to be done, Ro. After this summer is over, I’m going to figure out a plan. I have got to help other kids like you who deserve to survive this disease. I will do it for you and in your honor. I know this will not bring you back, but I know it is something that would make you proud and smile. I miss your smile so much.

Yesterday, I laid in bed for a long time and held your blanket and cried. I cry about you all of the time now because I am constantly feeling the emptiness of life without you. No more shock, no more numbness. Your brothers have been taking really good care of me though. Quinn likes to lay with me when I am sad and we talk about you. He falls asleep holding my hand much like you used to always do. You have the most amazing brothers, Ronan. I thank god for them everyday of my life. I don’t know what I would do without them. We are slowly finding our way back together. They have had such a great time being little beach bums with their cousins, Jake and Carter. It is so therapeutic to watch them grow close to their cousins. It gives me a lot of peace of mind. One of the most beautiful things to come out of this has been seeing all the new bonds and relationships that have been formed. I said this the other day to someone….. that one of the things I treasure most is how I’ve watched my beautiful girlfriends all come together and the new friendships that have come from this. The bond that they have all created is such a gift to me. They have all given me such a gift by helping me through this that I hope this gift is something that I have given to them. It’s been like watching a puzzle slowly come together and I know the friendships that have been formed will be friendships for life. We are all like sisters now. I watched the way they all came together for our family and for you. They fought and continue to fight for us. I never knew what a powerful thing love could truly be, baby. It was only when you got sick that my eyes were opened up to a whole new world. It is a beautiful world indeed, but I so wish I was learning this lesson through something else rather than losing you. I don’t know how we are going to heal without you, Ronan. I think our new life is going to have to drastically change. It’s going to have to have a much bigger purpose, a much bigger meaning than living in the little bubble that we lived in before all of this. We are working on the healing part of this a now. Baby steps. The ocean. Family time. New adventures. Simpleness. I can’t tell you how exactly we are doing this, but the fact that we all get up everyday and somehow manage to smile is a good enough start for me. It is all we can do right now, Ronan.

Today, Quinn and I were taking our usual walk to Starbucks. I had on my sunglasses, fedora hat…. my usual, “hello I just woke up look on and I’m going into town.” We were walking on the boardwalk and this girl and her boyfriend passed us. I only noticed her because she had some flannel shirt on and I thought how cozy and cute it looked. A minute later, I heard someone running up behind me and she goes, “Maya!” I turned around and it was the girl in the cute flannel shirt. She then told me how she reads my blog. I was shocked  she recognized me and I asked her name and introduced her to Quinn. She introduced me to her boyfriend and I asked where she was from; she said Arizona. It was so random and so sweet. So to Allie today, thanks for having the guts to run up to me and say Hi. It was really nice to meet you:) Enjoy the rest of your time here, although I think you are leaving to go back to AZ soon. I hope you had a nice trip here.

After we returned back to our place, we met up with Stacy who is here for the week with her kiddos and Kenny. So fun to have them here with us. We split up since I had a surfing date with Katie and Sarah. We took lessons today and I’ll have to say it could become my new obsession. For the first time in 9 months, I had to fully forget about everything in my life and focus on fighting to get up on that board, stay up, and concentrate like I have not had to concentrate on just myself in a very long time. We stayed out in the ocean for about 3 and a half hours today. It was just what I needed and I loved every second of it. I’ve always wanted to surf. So stupid that I’ve waited so long to try something that I’ve always wanted to do. There were always too many excuses before. Well, not anymore. I’m done making excuses, Ronan. I’m going to live a life full of passion and adventure and I’m going to do it not only for myself, but for you too. Life is too short to let things hold us back. All fear is out the window. I’m done being scared. You were never scared of a thing in your life. You have left me this gift and I will keep living this way for you. I owe you so much for teaching me so many lessons. You are my hero, Ronan. You are my everything.

That is all for this evening little man. I love you to the moon and back. I will keep you in my heart forever. Sweet dreams, my love.

xoxo

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo