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.

We live in a beautiful world

What a beautiful day. Today was filled with such beauty I almost don’t even know where to start. First, I just want to say that our prayers of finding a private plane to get us to and from New York City have been answered. I can’t believe all of the responses I got today from people who were more than willing to help us out. We can now breathe a big sigh of relief thanks to some very special people. Also, I got a call from somebody that I don’t even know today, whom I am just calling, S. She offered to let our family use their jet to get us to NYC and was so gracious and happy to help. We have decided to go with a bigger corporation, but I just want to say a special thank you to this family for stepping up and offering to help us. They don’t want to be recognized in any way… and that right there speaks volumes about the type of people they are. S, I cannot wait for the day I get to meet you and give you the biggest hug in the world. You are an angel and I will never forget your kindness and generosity that came from the truest place of all; your heart. So, thank you again; You and your family will forever have a special place in my heart.

I spent the day at home with Ronan and I actually got to cook dinner. That in itself was such a treat. I have always loved to cook and I was so excited to spend the day doing so. Ronan helped me add the ingredients to my beef stew; and loved every second of helping me. Woody was so happy to have a meal that I had cooked myself. He even told me he thinks it was one of the best things I have ever made. That made my night. After Wood came home and we sat and had dinner I put on my running shoes and headed out in the dark, cold night. Oh my goodness. I am so happy that running has found it’s way back into my heart. Geez, all it took was my little guy getting cancer. Sad but true. After I ran the NYC marathon a couple of years ago I started up the “I hate running club.” I have been a member of this club ever since completing that marathon. Well, now I am happy to say, I no longer belong to this club. Before all of this, I would have never ran in the dark alone. Now, I don’t care at all. It’s like I have nothing to be afraid of because all of those fears that I had before were so silly. I know what real fear is now and it is so much bigger than running in the dark. I blasted my music, ran so hard and so fast for a good hour. My calves burned, my chest burned, and it felt good. I thought of so many things during my run. I kept telling myself, every time my feet hit the pavement, it was one step closer to getting Ronan well. I pictured so many of my family and friends on Thanksgiving…. and imagined them all being happy and thankful this year. I know you all are going to be thankful for so much more than normal. I am happy to be able to give that gift to you. It makes me happy to think of all of you and all the beauty you have in your lives. It gives me peace. I thought a lot about New York and getting that fucking tumor out of Ronan’s abdomen. I can’t wait to just get it out of him. I am going to ask for it too. Call me crazy, but I want to see that thing. I am obsessed. I hope the doctors will agree; not sure if it’s something they will be o.k. with but I am going to ask. I thought a lot about all of the medication I am on now. I would like to say a big fat thank you for the inventors of Zoloft, Xanex, and Clonazepam. I never thought I would be one of those “people,” but I am and I am not ashamed. I am thankful that about a month after being in all of this, that I knew I needed help when I found myself locked in Ronan’s dark closest rocking back and fourth crying my eyes out. I am thankful that I was brave enough to admit that I needed something to help me get though this. So thank you, Zoloft for keeping me more steady and even keeled. I can now actually go into a grocery store and not flip out. I have not taken the Xanex yet…. saving that for when I really need it. And Mr. Clonazepam. I can finally sleep at night; peacefully. Before Mr. Clonazepam, I was lucky to get 2-3 hours of sleep a night. That in itself was enough to make me crazy. Sleep deprivation can really mess with your mind. I feel a little bit like the old Maya. A girl who used to be crazy strong and could have ruled the world. I need her back to get Ronan through this, and if it takes being on this stuff for a while, then so be it.

Ronan is going to beat this. There is no doubt in my mind. Tonight, he was jumping off of the ladder to Liam and Quinn’s bunk bed onto the ground into a pile of pillows below. And your telling me this kid has stage 4 cancer? It’s crazy to me. Nothing can stop him and his spirit. He must have told me 50 times today how much he loves me. We had a great, fun day together. Tomorrow, we will go to the clinic to have his levels checked. Praying that he can start his chemo tomorrow. It’s time to get this show on the road, people!

Sweet dreams to you all my dear friends. Please never forget how beautiful this life is; even during what seems like the darkest hours. I am so thankful for all of you<3

This is from my sweet friend, Jen… beautiful song and beautiful lyrics. Thanks baby.
Rascal Flatts – I Won’t Let Go Lyrics

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont