Pain is my Peace

Ro baby. Hi my spicy boy. It’s time for my love letter to you tonight. I’ve missed a couple of days of writing. I always hate when I don’t get to write to you. I’m learning that this writing thing is like a beautiful, tragic, love story. One that I don’t know if I’ll ever be able to stop writing because I never want it to end. It’s my way of keeping you somewhat alive, I guess. It helps me, even though it may seem like nothing is helping. I think today is Monday….. I think. Crap. I’m wrong. It’s Tuesday. The days are still blurry and the things that go on in my days are all jumbled together. I remember yesterday…. somewhat. I didn’t wake up for boot camp. Sorry Tammy. My sleeping is still out of whack. I stopped taking my Ambien and started trying Ristoral. We shall see. The first night I took it, I still tossed and turned and had very vivid nightmares. So I went to basically not dreaming at all for the past few months to having such excruciating nightmares that I woke up 5 or 6 times during the night drenched in my sweat. I wandered around the house. Looked outside at the moon for a while. Sat in your room. I fell back asleep around 4 a.m. There was no way I could get my booty to boot camp. I dropped your brothers off at school after sleeping until 7, then I went hiking at 9 a.m. It was bloody hot. I was determined to sweat all of the demons out of my body from the night before. Sweat them out I did. It must have been about 104 by the time I got to the top. It felt good. I did the same thing today. Same time, same place, with nobody else in sight. I love how empty the mountain is. Once I get to the top, I sit there for about a half an hour and cook in the sun. I talk to you out loud a lot. I always cry. I tell you, hi. I tell you I miss you. I ask you where you are. I tell you I’m sorry. That I need your help to get me through this. I tell you I don’t know what to do without you and I always tell you I hope you are safe. It’s become therapeutic to me. As I was running down the mountain today…. full speed with Katy Perry blasting, it dawned on me. This exercising is the ONLY thing that gives me some sort of relief from all of this pain. It is during this time that I have to focus on not breaking my neck as I plow down the hill as fast as I can. I focus on my body and pushing myself so much that the physical pain hurts. I don’t stop no matter how tired or out of breath I get. I want to stop sometimes, but then I think of you. I like the physical pain as it gives my mind a break. It is my church, my meditation, and it is slowly becoming my peace.

Oh, Ro. You made me smile tonight. Just as I am writing to you, the thunder starts, the lighting, the buckets of rain. You know how I love the rain. I’ll never forget that one day with you. We had just moved into our beautiful house. It was your nap time and it was pouring rain. We made a bed on the floor in my room and sat and watched out the french doors in my bedroom as the rain flooded everything. We sat and watched and listened. We rolled around and laughed and I don’t think you ended up taking a nap. You little rule breaker, you. It was pure bliss. I remember that moment, and how happy I was. I felt like the luckiest mama in the world to be there with you, watching the rain. It was one of the sweetest, most simple moments of my life. I have Quinn here with me now. We made a bed on the floor in the same spot the two of us did. We are watching the rain, together. We are missing you, together.

Last night, we had Curriculum night at your brothers’ school. Holy anxiety attack. I about lost it. It was way too stuffy in the cafeteria, way too many people, and way too long to stand still. At one point I whispered to your daddy that I had to leave. He just grabbed me tight and told me it was o.k. That I could do this. I stuck it out. Melissa was there, close by. She knew I was about to flip out. She said she almost grabbed me and ripped me out of the cafeteria. I so wished she would have. But I survived. Don’t ask me how, but I did. We had to go to your brothers classrooms after the cafeteria. I went to Quinn’s, your Daddy went to Liam’s. I did o.k. there. I was strong and fought back the tears as a picture of you popped up on my phone, randomly. My mind started racing about how I would never be taking you to school again, how I would never get to meet your teachers, your new friends, etc….. I quickly wiped the tears away and tried to get back to focusing on the task I was there to do. I left the classroom quickly when the talking was over. I didn’t stay to sign up for things with the other mom’s. I couldn’t mentally do it. I went to find your Daddy but he was still in Liam’s classroom. Just as I was getting ready to sit down outside, Melissa came and found me. My sweet saving grace. She didn’t want me to sit alone, so she sat and waited with me for until your Daddy came out. Thank god. I had the chance to say hello to some moms that I really like though. That was nice. It is always nice to get a hug from some friendly faces. It’s funny though all of this, you really see who are genuinely, good-hearted people. I feel like I have a gift for this now. I had the chance to give somebody a big hug that I have wanted to do for a long time. One of my busy, little bees. It felt so nice to hug her and tell her thank you. I want to do that with everyone who helped and I am going to set something up, as soon as I get myself a little more organized and my head on straight. I am hoping that day will come sooner rather than later.

Today, I hiked again. Bloody hot but worth it. I don’t mind the heat the way I used to. As long as it involves an escape for me, I’m down with it. Bring it on, Mo Fo. I am getting my butt up for boot camp tomorrow though. I have my alarm set. I have to otherwise I know what happens if I don’t. I sit and obsess about it all day long. Add it to my list of things I’m fixated on now. Boot camp or Bust. Who’s going to start joining me???? Hello my friends…. I’ll take all the motivation I can get to get there. If I had you all, counting on me, I would be less likely to skip days. http://www.phxbootcamp.com. Get your butts there with me. Stop making excuses. I promise, it will change you life:)

So, Ro baby. I’m nervous to tell you this…. but I actually had an o.k. day. Just o.k. but it was a better day than I’ve had in a long time. I had lunch with one of my busy bees. It was lovely. We talked about The Brightest Star in the Sky event next year. I got to know her a bit and loved every second of it. Pure heart, smart, caring, and no hidden agendas and passionate about making a difference in this world. She had me at hello 🙂 I’m so thankful to have had so many people step up to the plate, to teach me that they care more about shopping, vacations, and wine drinking. Not that there is anything wrong with that, but adding a little something more to your life in such a meaningful way is good for everyone. It’s good for the soul. And a good soul can make all the difference in the world. After our lunch, your daddy picked me up so we could go to our therapist together. I was honestly dreading it. I feel so disconnected to everything now. Having to reconnect with your daddy, in front of a stranger, gave me a lot of anxiety. But once we got there, within 10 minutes, I knew this was going to be a good thing and something we desperately need. It was hard and we didn’t even get into the hard stuff yet. It was mostly an introduction and then she wanted a background on us and what we had just been through. There were a lot of tears, a lot of not being able to speak because having to re tell the story of you is so unbelievably painful. But we did it as best we could. And we did it together. I am proud of us. I liked this lady too. She knows stuff and I liked her honestly. We will go back together, I’m sure for a long time, as this is not something we can work through overnight. This is also something we cannot do without outside help. We both know this. Afterwords, we spent some time together and it ALMOST felt good to me. ALMOST. My pain is not capable of letting me feel good about anything now, but it is the closest I’ve come in a long time to feeling this way around your daddy. He is the most amazing man on the planet. I know this. As hard as all of this is, I think we will be o.k. I know there are no guarantees in life, but what we have is too amazing to throw away. He is my best friend, despite my brattiness that I often display to him. I don’t mean to, which is why I have to figure out how to deal with all of this pain, instead of taking it out on him. He is my easiest target and does not deserve any of it. You don’t get a better man/father than the Wooddawg.

Alright my little man. I’m tired. I’m going to try this Ristoral tonight We shall see. I love you to the moon and back, my blue eyed boy. I miss you so much and hope you are safe. Sweet dreams, my dear.

xoxo

                                                   I LOVE US….. FOREVER TOGETHER.

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

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. <3 <3 I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.