Feathers, Glitter, and all things Sparkly

 

 

 

Today was a very productive day. My sweet, dear, Fernanda stopped by for a coffee drop off and a visit. She went over my “To do” list with me and helped me decide how to tackle it. We also talked about our little project we have in the works… she has an amazing business mind. More on that when we are further on down the road. Let’s just say the two of us, when Ronan is well, are going to change the world and make the most amazing things come out of this. It is a good, heathy distraction for me right now; something I am very excited about and I am so honored to have Fernanda by my side <3 It’s so amazing to me, how you know someone through the years, and then something like this happens and your relationship either truly blossoms or bottoms out. Out of this, I have found a very special friendship that had always existed, I just never knew it until now.

After Fernanda left, one of our angels who writes on my blog a lot, but I have never met before, came over to help me out with some things. My new friend, Rita, came and did the mounds of paper work that has been looming over my head like a dark cloud. It took her around 3 hours and I am so grateful for her and her organization skills. There is no way I was going to be able to tackle that project this week. My mind is all out of whack and paperwork is something that has become totally overwhelming to me. Thank you so much, R. You saved my life today:) And Ronan loved having you here! I can’t believe how openly he welcomed you into our home. I am very thankful for that.

I cleaned out our pantry, caught up on all of our laundry, paid some bills, and cleaned and organized all of Ronan’s toys. If I leave here with things like that not being done…. I will drive myself crazy thinking about it. Stupid OCD. I will feel so much better going to New York and knowing that everything is organized and put away where it is supposed to be.

Ronan was a happy little boy today. He did a lot of playing by himself while I got things done. He snuggled up in my arms and we took a good nap together. Snuggling with him is one of my favorite things in the world. He fits so perfectly in my arms. Liam and Quinn came home from school and spent it playing with Ronan. I am trying to let them soak up their time with him as much as possible. They are such good big brothers. I am so excited to spend Christmas with them in New York. I have not done a thing as far as Christmas shopping goes this year. All of the gifts, cards, “stuff,” just seems so meaningless. Woody came home all excited about the gift he has gotten for me and I didn’t mean to burst his bubble, but I told him I didn’t want anything. That is not true; the only thing I want this year is the best doctor in the world operating on my baby. And he already got me that. I couldn’t ask for more at this point. I know I am going to have to get some things for Liam and Quinn, but I think I’ll leave that up to Woody. I can’t focus on stuff like that this year. One of my most favorite things about Christmas is sending out our annual Holiday Card. Not happening this year. Makes me sad; but I’ve got bigger fish to fry. I’ll send you all one on my blog, how bout that;) Think of all the trees I’ll be saving!!

We have a pretty good plan in place for New York. Woody, my in-laws, the twins, The Kotaliks, My mom, my oldest friend, Sandy, whom I have known since I was 5, and Tricia will be coming in and out. Trish and my mom will be with me on my birthday<3 So happy about that. I’ve got a few tricks up my sleeve as I always do as far as ways we will celebrate once Ronan’s surgery is successful. One of them involves glitter… and lots of it. I’m obsessed with anything sparkly and glittery and I used to be a very fun girl. I’ve been thinking of ways we can celebrate and make this milestone something to remember in a very positive, fun way. Trish and I went shopping for hats to wear in New York and I bought a silly feather white feather headband to wear on New Year‘s Eve. Who cares if we’ll be at the Ronald McDonald house…. we will still have sparkles, glitter, and feathers galore. This is our journey and I cannot wait to say goodbye to 2010. Remember how I told you about “Earmuffs??” Or maybe stop reading here….. You know what I’m going to say to 2010?? Adios Mother Fucker! Worst year of my life. 2011 is going to be all about getting Ronan better and healthy.

I heard “Iris” by The Goo Goo Dolls on Pandora tonight. It made me think of Ronan. Cheers to you, baby boy.
And I’d give up forever to touch you
Cause I know that you feel me somehow
You’re the closest to heaven that I’ll ever be
And I don’t want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it’s over
I just don’t want to miss you tonight

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

And you can’t fight the tears that ain’t coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

P.S.  I totally heart Neil Young and  Johnny Cash. They bring me peace and sing us to sleep every night. Goodnight to all of you beautiful souls out there. Wishing you all health, peace, and happiness. Love you ALL. So thankful for all of you and how you are always keeping us in your thoughts and prayers. Ronan is a fighter, there is not a soul out there like him. I PROMISE you, he will get through this. I can feel it in every fiber of my body and soul. And through this journey, I’ve come to find out how true and right my insights are in regards to my life. I BELIEVE.

He is my sun, my stars, my moon above

A bloody nose led us to the clinic for platelets earlier today. As soon as we were ready to head home, Sharon came over to flush out Ronan’s tubes and the saline started squirting out the side. Not a good thing. He had a tiny hole in the line that leads to his broviac which could cause a major infection to go into his system. That got us booted out of the clinic and sent over to the ER to have his tube replaced. It was no big deal; they just clasped  off the top of his tube and replace the bottom where it was broken. Now, we have to stay in the ER so he can get a dose of antibiotics as a preventive to any kind of infection that may have started to grow. He has not been happy to be here. Lots of yelling and screaming that he wants to go home. Can’t blame him. The ER sucks. And not to mention, playing Christmas music in the ER is just wrong.  He is asleep now… Thankfully. But as always, as he sleeps away and I sit for hours holding him; I have way too much time to think.

Do you know what it’s like to cry tears because your baby has cancer? Do you know what it’s like to even fathom the idea of losing your child? I do. Every second of the day I think about Ronan. He is the love of my life; the last baby that we decided to have. He completes our family. He was the perfect ending to all of us. He makes us whole and all around we are better people because of this one little boy. Sometimes, I sit and think about life without him and it makes me sick to my stomach. And for all of you out there who are going to tell me that I shouldn’t be thinking that way; too bad. It is a part of this, as sick as it is. I can already tell you life without my baby would be HELL. I am so sad for any parent that has to live through something like that. It is not right and it is not fair.

I started the day off today by crying, and I’m ending the day the same way. I’ve been sitting here in the ER for 3 hours now staring at the wall saying over and over in my head, “Please don’t take my baby away.” I’ll bet you I’ve said this a thousand times tonight. It’s all I can do right now. If I say it enough, it has to work. A life without Ronan, would be no life at all.

I, on the other hand, got not a thing done  today in regards to our upcoming trip. Tomorrow will be better, yes? It has to be.