The election is over! Now, we can focus on turning the White House Gold for September and save some kids!

Ronan. I am having a hard time breathing. I can’t tell if it’s grief that is trying to suffocate me or Poppy. Either way it is making this life without you, harder than normal. I didn’t know that was possible. I spent the weekend at home, doing normal things with your daddy and brothers. The kinds of things we would have been doing, if you were still here. The things I have the hardest time doing now in life. Those simple easy things in life that I used to love so much but now I feel as doing them is harder than running a marathon. Without training. Liam was still a little under the weather. I tended to him and we went to bed pretty early on Saturday. It’s all I can do to make it to 9:00 p.m. without passing out. This growing a baby business is a lot of work. One that I am not a huge fan of. I never have been. The outcome is of course so worth it, but I have never been one of those women who enjoys pregnancy. It feels like a prison. I am trying to stay positive, but it’s hard to all of a sudden feel like you are just stuck in quicksand and there is nothing you can do to get out of it. Before I was pregnant, I had so many physical outlets that kept me sane. I could blow off steam so well with an easy breezy 8 mile run. Now I am panting at climbing a flight of stairs. So mentally and physically I am having a hard time getting out all of my grief in the ways in which I would before which may be another reason for my feeling of constant suffocation. I’ve been throwing myself into working on things for your foundation. That is saving my sanity a little bit I suppose. It is saving the shred of sanity that I have left.

Last night we had tickets to see my boyfriend, Eddie Vedder in concert. One of our little lovies, somehow got 6 front row seats where I got to sit about 10 feet away from Eddie as he gazed into my eyes and sang to me the entire night. That might be exaggerating a little bit but an over active imagination is healthy. He played our favorites. I was not the only one with tears streaming down my face as he sang our song, “Just Breathe.” I think everyone that was there with us, had them streaming down their cheeks too. I tried to fight it, but eventually the lump in my throat became too big and the tears came next. Buckets of them. I wiped them away and pictured you running up on the stage as Eddie sang his song, only the way he can. One that makes you get completely lost in another world. I, as always, was lost in the little world of yours. It’s my favorite place to be. I know Eddie had some Ronan ESP going on as next to last song was the one and only Neil Young’s, “Keep on Rocking in the Free World.” You’re telling me that was a coincidence? I know it was not. It was you working your magic in the ways that you always do. My entire body ached for you and I had flashbacks to the way you used to dance to that song. Thanks, Eddie V for playing it just for Ro last night. I know you did that for him. I could not have thought of a better way to end the night, then with that.

Today, I woke up bright and early. For going to bed so late last night, I woke up before the sun came up. I tossed and turned for about an hour before finally getting up. I had nothing of real importance to do today, but I was restless anyway. I ran some errands and went to the office. I worked through much of the afternoon on some foundation things and had about a half an hour phone interview. This one was hard for some reason. I forget what question it was exactly that I was trying to answer, but I know I had to stop myself and apologize for the sobbing that was taking place on my end of the phone. I think I remember telling the lady on the other end of the phone something about my last words to you and how I told you how sorry I was over and over again. She asked me what I was sorry about. I told her how I promised you I would save you and get you better and the fact that I didn’t or couldn’t will make me sorry for ┬áthe rest of my life. She asked if I thought you knew that you were dying. I think about that question a lot. I told her that I did not think that you did. How some of your last words to me were, “I don’t want anymore sleepy medicine.” I told her how you had to be put under anesthesia a lot and how I think you thought you were just going to sleep, but you would wake up again. I think about this so much in my head, all the time. I wonder if I should have told you that you were going to sleep forever. I didn’t. I don’t know if I should have or not. I’m so sorry you are sleeping forever and won’t ever wake up. I will forever have post traumatic stress over this. No mama should have to kiss her babies lips one last time and to be expected to live a life without kissing them again. Being a parent to a dead child is the hardest job in the world. Much harder than being the parent to kids who are alive and well. Being the parent to a dead child is the hardest kind of parent to be. I don’t think anybody in the outside world realizes this. It’s a truth I never thought I would know. It’s a truth that I will forever wish I didn’t know.

I had a board meeting last night at our new office. All of the girls were so excited. It was so nice to be able to have a space to go, that was not our own house. Our board meeting was long. A good 4 hours last night but we got a lot done as we always do. I woke up this morning with a big to do list. I got a lot of it done but by noon I knew I had reached my limit for the day. The little sleep I got last night combined with a raging headache led me to driving home and crawling in bed for a few hours. I took about a half an hour power nap but then had to get up to get some things done. Your daddy picked up your brothers from school and we all went out to grab a bite to eat as the cooking was just not happening tonight. I find myself sitting back and listening to your daddy a lot and the way he talks to your brothers and explains so much about the world to them. Once again, that bittersweet word will be used again because it is so bittersweet to hear the things they are learning and knowing you should be here, learning them, too. Tonight at dinner your daddy talked about everything from Shakespeare to the election. I watched them soak it all up like little sponges. They are so lucky to have a daddy like yours. Tonight, sitting at one of our favorite restaurants, I felt pretty lucky. Not every child grows up with a daddy like yours. So I felt lucky for that. Your brothers are amazing little boys and I know a big part of this is due to the strong male figure they have in their life. They are happy, loved, and have been through the worst, only to watch as we have survived it all. I feel like a bit of their self-confidence and security is coming back. I know this could have shaped them either direction. I am thankful that our situation has only seemed to make them stronger and have a love for our family ┬áthat is so strong because they understand how precious it is. Such hard lessons for young boys but I know this will make them stronger men. Of course you know I would rather have you here and not have to have them “learn,” any of this. I am just doing my best to be grateful for the things I have that are tangible to me, like your brothers brave little hearts.

I gotta go little man. Lots to do, always for you. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

P.S. I am not going to get into politics on here but I am so glad the election is over. I took Poppy to vote yesterday and we as a family had such fun last night watching the polls. It was a good night. I am so glad we can now focus on turning that White House Gold for September. I have faith that our President will do the right thing and make this happen. There are too many babes dying. A change has to come. I am thankful for President Obama and the Creating Hope Act. It’s time to take this to the next level and with all of you on our side, I know this can happen! Love you all, so much!

Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo