Happy Easter Ro baby

Oh Ro baby. Happy Easter. I’m not going to lie. It was a hard day today. At one point, I did not think I was going to be able to get out of bed. I wanted to spend the day hiding under my covers. It took me a few hours once I woke up, to get things started for the day. I was barely functioning. We planned on going over to Woody’s Uncle Larry’s house where all the cousins were going to be. In my head, I kept thinking, how am I going to face everyone? I’m way too sad. But I knew how much my twins were looking forward to it and I knew it would be good to be surrounded by our loving family. Woody and I got the boys ready and dressed and then got ready ourselves. Out the door we went and I turned my frown upside down; as best I could.

The day was spent watching the boys playing, laughing, running, swimming, and enjoying their cousins. Ronan even got a little wet and ran around as much as he could but stayed by my side most of the time. It was good to be with family on such a special day. There was a sadness in the air, but it was overcome by the beauty and strength of Ronan. I refused to let cancer ruin our beautiful day. Ronan was happy, smiling, and laughing while throwing water balloons at his cousins. Today, cancer did not win. Today, we held our heads high and enjoyed his little life to the fullest.

Ronan was ready to go after a couple of hours so Woody and I took him home while the twins stayed behind to play the rest of the day away. We came home and Woody ran out to do some things which left me here alone with Ronan for what I thought was going to be some quiet time. No quiet time allowed as I was told by him. He was all ready for a Star Wars battle so that is what we did. Fernanda stopped by to drop off some of her amazing confetti filled easter eggs which Ronan smashed over my head. She had her Brando with her and I wanted to just eat him up. Cutest thing ever. He was dressed in a tee-shirt, his skinny jeans, and cowboy boots. She has the most beautiful children and I was so happy they stopped by for a few minutes.

After Fernanda stopped by, I had texted Gay  earlier to tell her Ronan was really wanting to see Cal. She then came by about an hour later with her boys, Cal and Chet. Ronan was over the moon. They played and Gay helped me get a lot of the little things around the house put away. I am so thankful for my wonderful friends and the way they are handling all of this. They all refuse to give up and are more than rising to the occasion. I will never stop being blown away by all of their support and love. We are so blessed to be going through all of this with the most amazing people by our side.

I am finding laughter in the stupidest things these past few days. Not much is making me laugh anymore and laughing is one of my favorite things in the world. Woody has put on our “South Park,” DVDs. So stupid, vulgar, and immature…. but I have been dying laughing at them. Trey Parker and Matt Stone = Freaking geniuses. I am such a sucker for some dirty, foul-mouthed humor. Works every time. Even in my numb, fogged induced state of mind.

Tonight, we did normal family things. I got to tuck my Liam and Quinn in to bed which is such a precious gift to me now. I spent today washing all of their sheets and duvet covers. Felt so good to do something normal. I love laundry and I could never get tired of doing it. It is my favorite normal chore in the world.

I thought about a lot of you today, even the people I don’t know. I imagined your faces that I have made up in my head and wondered what you were doing on this day. I imagined a lot of your kids dressed up in their Easter best, a lot of you at church, and all of you watching your kids with your love for them pouring out of your hearts because you know how blessed you are to have them and I know how even more thankful you are for their health. Thinking of you all made me happy and warmed my heart. I hope I get to meet you all someday. I would like to give you a smile and a hug and thank you for supporting our family, whom you don’t even know. I am so thankful for all of you as well.

Tonight, after all of my babies are asleep I am going to go and kiss my husband and thank him for being the best man in the world and tell him how proud I am to be his wife. He deserves to hear this everyday. He is simply the most amazing man living on this planet. I will always think I am the luckiest girl alive that the stars aligned and we met when we did. I’ll never forget our first date and how I just knew he was the one. 11 years later and here we stand, going through the hardest thing of our lives, but we are going through it together, not apart. As much as I would like to put up my walls and as much as I try, Woody always finds a way to knock them down and I let him back in. He is the best thing that has ever been mine, that Wooddawg of mine. Mine forever. No matter what we have to go through. We will never let go of each other.

Sweet dreams to you all. I hope you had a beautiful day with your beautiful friends and family. I love you all so very much.

xoxo

This is from my sissy, Liz, tonight. I love you so much, Liz. This is just what I needed to hear.

Easter represents rebirth and new beginnings..how appropriate. Love you and your family with all my heart. And remember, we don’t call Ronan a rockstar for nothing!! 🙂 xoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxooxoxoxoxoxo

Dear Dr. Kushner-

You want me to give up on this? You gave up so easily but I will never. Did you forget the most important factor in your decision making? Him. He is not like other little boys. He is our miracle, our Rockstar, our gift. This is not over and it breaks my heart that you stopped believing. Miracles do happen; everyday.

Fondly,

Maya Thompson

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms