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. 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.

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

Angels waiting in the wings

I am amazed at the people who have come out of the woodwork to help us. People that we know and complete strangers just because they are touched by Ronan’s story. I put something out into the universe today… and I am getting amazing responses. People who are willing to go above and beyond to help us any way they can. It is people like this that the world needs more of. Selfless people who stand by their word and pour all the energy they have into helping out people like us. I’ll never look at the human spirit the same again.

All has been pretty quiet around here. Ronan is still storming right a long. He had a few fits today….bouts of anger and hitting me for no reason. Well, I guess he had a reason…. his reason. He was that angry that Liam and Quinn were not home. He likes to take it out on me and when his little temper hits, I bear the brunt of it. Not fun to see or watch. He’s like Dr. Jekyll and Mr. Hyde. I never know what his moods are going to be like. I am doing my best to discipline him but sometimes nothing works and I’ve come to find out I just have to let him let his anger out. He’s got to be angry about a lot and I know he is having a hard time processing what he is feeling. It’s heartbreaking. I keep telling him that we will get through this and he will get better. He talks all the time about getting his “Iron Man” out. I don’t blame the kid.

We go to the clinic in the morning and then Mimi Kay and Kathy are going to watch Ronan so I can get some things done. It will be nice to get out of the house and take a break from Ronan. I am meeting my friends Jen, Bethany, and Trish for lunch and to go over some things for Ronan. I am so lucky to have girlfriends who are willing to drop whatever to see me and work on some ongoing projects with me. All of their support has been keeping me going.

I can’t believe the holidays are right around the corner. It’s my favorite time of year to live here. I am hoping to take Ronan to a pumpkin patch this week or next. We will of course talk Liam and Quinn as well. Last year we lived at the pumpkin patches and I took all of the boys half a dozen times. We are a pretty active family and I love taking my 3 little guys off for adventures. It’s been awhile since we’ve done anything like that. Ronan seems to be feeling just fine so a pumpkin picking we will go.

I’m still trying to find my balance and where my life fits into all of this. Before this happened, my life consisted of a daily routine of healthy outlets. I’ve let all of those things go and can’t seem to get back into them. I miss my workouts, running, hiking, boot camp, etc…. Any time I have free from Ronan, I find myself feeling guilty. I feel like I need to be with him 24 hours a day. I know that’s not realistic or heathy, but time away from him feels selfish to me. I know I need a break and I am going to try to start doing some things again. To be quite honest, I feel like if I put myself back out there, there world is just going to swallow me whole. It’s that whole anxiety thing that I’m now dealing with I guess. I feel safer trapped inside my little bubble with my little guy by my side. It is something I will continue to struggle with but I will also continue to work on. There has got to be a happy medium somewhere… it’s just going to take work to find my new comfort zone.

It’s 3:10 in the morning now. I’ve been up off and on all night long. I finally feel like I am tired enough to sleep a few hours. Thanks for reading this, thinking of us, and praying for our family. Love to you all<3 Goodnight, friends.

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!