Ronan. The past couple of days, have wiped me out. Mentally and physically. I cannot believe tomorrow is Friday. Where did this week go? I blinked and it was gone. I tried to tell Tricia today, what I have been up to. I couldn’t even remember. Still waiting to find that memory of mine that seems to have disappeared. Good thing I write to you at night. Could you imagine if I did not have this blog, to keep track of everything that we have been through/done? I would not be able to remember a thing. I was trying to give Dr. Joanne, an idea of the timeline of some things that we went though. I could not remember the months that we did your treatments and traveled with you to save my life. That is one of my homework assignments this week. To create a timeline of events for her. I also get to write that letter to Dr. Kushner that I have written, a million times in my head to him and bring it to her. Should be an interesting session the next time I see her.
I woke up today, tired. I took your brothers to school and came back home. I crawled in bed. Fernanda came by and I told her I was hiding. She told me it wasn’t allowed but crawled into bed with me anyway. We snuggled in bed together and talked about a lot of things. We talked about you a lot. We held each other and she just sobbed, really hard. I held her and let her. I cried too, but not like she did today. I’ve been crying so much I guess my body just took a little break and let her do some of the crying for me. I told her that I am going back and fourth between two things. I am either thinking that you were never real, you were never mine. Or I am thinking none of this is real and you are still here. My mind has been furiously playing tricks on me for weeks now. I cannot remember what is reality or what is not. I guess it’s in protection mode again. Maybe that’s why I have not been getting any little signs from you. It’s been awhile since you changed my radio station.
Fernanda left our house with a couple of chores to do for me. We are on a mission to change the face of Childhood Cancer. We have recruited 2 of our lovelies. Tricia and Stacy. We are putting together a game plan as far as where we want to start. We are meeting in a couple of weeks to go over our ideas and to make sure we are all on the same page. We all seem so scattered right now. We need to come back together so we can work with each other on what it is we want to do. Baby steps are beginning. Ro baby steps.
I left the house soon after Fernanda. I ran some errands. I came back home and decided to skip my Inferno Hike today. I threw on my Purple Running Shoes, just for you, and decided to go on an Inferno Run instead. This is a new one. This is how you know, I’m truly in HELL. I hate running in the heat. I used to complain about it so much. I was determined to do it today. It was awful, but in the best way possible. I only made it about 5 miles. I could hardly breathe due to my throat being so dry, the entire run from the heat. Oh well. At least I am lucky enough to be alive, right?? Yeah right. So lucky. It’s just where I want to be. I have to get my butt back into running though if I’m going to do our half marathon in January. I’m going to do that thing and make it my fastest time ever, just for you.
After my Inferno Run…. which I did not die on, but I wished I would have… I came home and showered. I had to meet your Daddy at Dr. Rachel’s office for our therapy together. I don’t know why, but I always feel so peaceful sitting in that room with your Daddy. I tend to be a little more quiet, calm, but always sad. I listened to your Daddy explain your treatment path to her and why he knows we did everything we could do. Why we made the decisions we made and if we had chosen differently, he still thinks the outcome would have been the same. He’s in a good place with the things we decided for you. I am not. But that is not a reflection on your Daddy. It is a refection on me and the way I am beating myself up now. I could have 10 of the best doctors in the world, standing in front of me, telling me we made all the right choices, and I still would not believe them. I’m convinced if we would have made the right choices, you would still be here. So in my mind; I failed you. I killed you. This is my fault because I am your Mama and I should have been able to protect you. I should have known that you were dying right in front of my very eyes those past couple of months. You were my child, my soul-mate, my other half. How could I not have known, that you were dying? That makes me the worst Mama, ever. This is where I am now and I don’t need anyone to tell me differently. I don’t need your Daddy to convince me that this is not true, because it is not going to work. I have to come to a place of acceptance, by myself.
I like Dr. Rachel. She is good for the both of us, but she is really good for your Daddy. He needs to be talking to someone, other than me. He went to see her without me yesterday. I am thankful he is being open to that as I know it is not easy for him. He is good at not dealing with his things and pouring all of his energy into taking care of other people which is just not healthy. He needs to deal with the sadness that has come from everything we have been though. Otherwise, it is going to eat him alive later on in life. We cannot have that. Your Daddy is such a strong man, Ro. But he needs to realize that he doesn’t always have to be. This is why Dr. Rachel is good for him. She is good about letting him know this. I’m thankful for her.
We came home to the boys’ and my dear friend, Melissa who had picked them up from school for me. They got to have a play date with her 2 kids which they always love. Your Daddy took the boys to play basketball and I stayed home and “cooked,” dinner. Does taking food and throwing it on the grill count as cooking??? It does to me. I have not cooked in so long. I miss it, but the thought of cooking food, makes me sick to my stomach. Cooking food, sitting down to dinner, with your spot empty kills me. I did it tonight and it was just sad and lonely. I hated every second of it. I hate every second of everything right now.
I love you. I miss you. I have a wicked headache and it has nothing to do with the 100 degree heat I ran in today. Nothing at all, I’m sure. I love you. I hate this. I hope you are safe, my sweetest blue eyed boy. G’nite Ro baby. Love you forever.
My friend, Samya, is amazingly talented. She has designed a tee-shirt, inspired by Ro, and children everywhere, sick or not. Until the end of the month 15% of sales will go to Ronan’s Foundation. You can order any shirt, any style. Support Ronan by wearing the raddest shirts around. She’ll even make an F U Cancer, one!!
Below is what she had to say about the new shirt and how she was inspired.
all good things are wild and free. -henry david thoreauIf we are lucky, as adults, we will still feel this way…we will still be this way. We will love wildly, we will give our hearts and be selfless. We won’t strive harder to drive a range rover than we will to dance in the rain with our children. We can make choices as adults to live this way. This is why this quote fills my heart…kind of like when I hear that’s it’s okay to march to the beat of a different drum…because that’s always how I’ve been. Always heard a different beat, always needed to be wild and free.But this quote also breaks my heart. Because if there is one thing that is certain, it’s that children should be able to be wild and free. They should be able to be careless, they should be able to jump in puddles and color on the walls. They should be able to be utterly wild, and free. This year I have been faced with three important women in my life whose children have been diagnosed with cancer. Two of their little girls, Mia and Elizabeth, are fighting for their lives. One, a little three year old named Ronan Thompson, lost his battle, and he is now an angel in heaven. Ronan’s mom Maya Thompson has a blog called RockstarRonan.com, and she has made it her mission in life to raise awareness and funds for Childhood Cancer. Maya and Ronan, and Sandra and Mia, and Heidi and Elizabeth have changed my life. I work less, I play with my children more. I have less rules, I give more kisses. I know that ALL GOOD THINGS ARE WILD AND FREE, and I won’t take for granted that my children and I will always be able to live like that.
When you wear this shirt, I don’t want you to be sad, I don’t want you to think of Cancer, I just want you to try to live the words that Thoreau wrote. Forget what’s unimportant. Be nice, smile, let the other car go ahead of you in traffic. Be who you were meant to be before all the other stuff got in the way.
I handscreenprint Thoreau’s beautiful words onto a super soft, rather sexy backless flowy burnout tee. The tee is cropped in front and long in the back, and it is backless. Available in S,M,L,XL. I am wearing a Large in the photos, I like them extra flowy. The color is oatmeal heather and you can choose your ink color. I used lipstick pink on this one. *****In NOTES TO FIREDAUGHTER when you are checking out, please indicate desired size and ink color.