Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

I get by with a little help from my friends

There is no better way to start a Sunday morning than meeting up with my girlfriends at Taylor’s for breakfast. Tricia, Bethany, Fernanda, and Stacy all came prepared with everything we needed to talk about as far as getting things in the works for transplant. These women, I swear could rule the world. Smart, compassionate, funny, beautiful, and savvy are just a few things that come to mind when describing them. Fernanda came armed with a lot of printouts about questions we need to have answered about the isolation period and we put together a pretty good game plan. It was a little overwhelming but I know not to worry too much because these girls have it all under control. There is no way that they will not have everything and more covered. We started lists of everything from who will do laundry to the schedule for Liam and Quinn, to who will sneak me in coffee when I need it. There is nothing these girls will miss and I could not have more peace of mind with whom I am leaving things in charge of. Fernanda has read over 60 blogs of other Neuroblastoma moms and knows everything we need to do and ask.

As we were leaving Taylor’s I was getting into Tricia’s car and she looked over at me and called Fernanda a real life Superwoman. She hit the nail on the head with that one. Fernanda is a even better than Superwoman… she is my version of a Spanish Superwoman with sass, spice, brains, compassion, and just the right amount of  a fiery attitude to help me kick ass through this. Then there is Stacy. The most loyal person I have ever met who loves me like I am family. Who knows just how to calm me down by just giving me a look. If there is ever a time that I feel overwhelmed or panicked, all I have to do is look in Stacy’s eyes and I know everything is going to be alright. She is the type of person who will bend over backwards for you, without ever asking a thing in return. She gives with her entire heart, no questions asked, and fills me with the peace and calmness that I so need in my life right now. And Bethany. You look up the definition of Grace and Beauty in the dictionary, and you will find Bethany’s picture. She is somebody that I have known almost my entire life, just not well at all until now. She is guarded but wears her heart on her sleeve. I am honored that she has slowly let me into her life as it takes a lot to earn Bethany’s trust. She is the most amazing mommy, wife, friend and someone who I would trust with my life and the life of my children 110%. Last but not least, there is my Tricia Boo. My best friend for 6 years now and we have the kind of friendship that dreams are made of. It’s been a six year love story and now she has basically given up everything to help me through this. She is the Godmom to Ronan and my saving grace. There is no way I would be able to get through this without her. Sitting at breakfast this morning I felt so fortunate so be surrounded by these women. One of the biggest gifts I have received on this journey is finding out what people are really made of. The people that are in our lives, right now, at this moment, are pure gold. They are my hidden treasures whose hearts keep me filled with courage and strength. I am beyond blessed.

I think I just wrote a love letter to my sweet girlfriends above… I could seriously write a book on each and every one of them. You know how else I know I am beyond blessed?? Because I just took the time to write about those 4 girls above and I have a handful more amazing girlfriends who I could go on and on about as well. You all know who you are and I love you so much. I will never be able to thank you enough for all you are doing for me, for Ro, for our family. I will simply tell you everyday how much I love you and how thankful I am that people like you exist in the world and I treasure you all so much. Thank you for being the truest friends alive in the purest way possible.

After breakfast, Trish came over and we sat down with Woody to go over everything. We started an online calendar to get the ball rolling on what exactly needs to happen and to figure out which days/nights I will be in the hospital and which days/nights I will be at home. Seeing this on a calendar defiantly makes me feel better. Having something to look at helps to calm my nerves. I feel like we are starting to put a very good plan into place. The thing with cancer is everyday is different and you never know what to expect, but at least this gives me a little something to hold on to. I thrive in structure and with a good plan in place I feel like I will be able to fully focus on Ronan if I know who is doing what on this day and at this time.

Today, the boys’ played with their cousin Luke for most of the day. We also had Luke’s sister Lily over to play as well. She was such a little trooper, keeping up with a house full of 4 crazy boys. I took her up the street for some girly time and we got mani and pedicures. Lily is 8 and is just as sweet as her brother. I never get little girl time, so I was in heaven. She is darling and I loved spending time with her today. We both got glitter nail polish on our toes and Lily got pink on her nails with a little flower design. I would steal those kids every weekend if I could:) It is adorable to see this new relationship flourish between cousins.

After Luke and Lily went home, I could tell Liam wasn’t feeling well today. He took a big nap which he never does and woke up with a sight fever. I sat and held him for a bit but we had to call Mimi and Papa to pick him up so he could go and stay at their house for the night. We can’t take any chances around Ronan if Liam does have something. I hate that I can’t take care of my little guy who isn’t feeling well. I mean, that’s supposed to be my job… I’m his mom. We don’t have a choice though, we cannot have Ronan getting sick with anything before transplant. Off he went and Woody, Ro, Quinn and I walked down to Jay’s house to watch the Superbowl. We had a great time and Jay was the master of the BBQ making the best steaks ever. We hung out, watched football, ate, and played catch outside. Ronan got tired around half-time so I brought him home. Quinn and Ro are fast asleep now and Woody is having some boy time with Jay and Mark. He needs that so much. I am so happy that Woody’s best friend now lives right around the corner from us. It has been nothing but great for all of us.

Alright, xanex is kicking in. I must get a good night sleep tonight…. I have so much going on this week and if I am not sleeping, lord knows what I will forget to do or what I will mess up. I’ve got to try to start sleeping more at night…. otherwise my brain turns into mush and I cannot focus or remember a thing. Hope you all had a great weekend. It was one of the best weekends we have had in a very long time. Goodnight to all of you out there… sweetest dreams possible.

xo

Look at the stars,
Look how they shine for you,
And everything you do,
Yeah, they were all yellow.

I came along,
I wrote a song for you,
And all the things you do,
And it was called “Yellow.”

So then I took my turn,
Oh what a thing to’ve done,
And it was all yellow.

Your skin
Oh yeah, your skin and bones,
Turn into something beautiful,
And you know
You know I love you so,
You know I love you so.

I swam across,
I jumped across for you,
Oh what a thing to do.
Cuz you were all yellow,

I drew a line,
I drew a line for you,
Oh what a thing to do,
And it was all yellow.

Your skin,
Oh yeah your skin and bones,
Turn into something beautiful,
And you know,
For you I’d bleed myself dry,
For you I’d bleed myself dry.

It’s true, look how they shine for you,
Look how they shine for you,
Look how they shine for…
Look how they shine for you,
Look how they shine for you,
Look how they shine…

Look at the stars,
Look how they shine for you,
And all the things that you do.