All the things I wish I’d known…

Ronan. Fucking fuck fuck fuck. We left AZ. Had to leave AZ. Just like we do, every summer. This year, I couldn’t get out of there fast enough. Last summer, I was in such a fog coming here. I think I was highly medicated. I don’t remember any of it, really. I left you at home. I left your urn and your ashes at home. This year, I didn’t. I put your urn at my feet in the front of the car with me. Safe and sound. I was not about to leave you behind this time. Who reads that last sentence that I just wrote, and is able to just go on with their lives? Who reads that sentence and just goes, “Oh, that’s nice, she tucked her child’s urn, at her feet because he died of cancer… I’m off to go shopping now and not help in this fight against childhood cancer.” I think a lot of people. I think a lot of people who still live in the world of puppy dogs, unicorns and rainbows. Those people, suck. I am thankful for those who read my words, close their eyes, are thankful for all that they have, but that is not enough. I am thankful for those people who do not just go on with their days, without thinking about Ronan or Ava or Esther or Ben or Liam or Hazen or Ezra or Saoirse… I could go on and on and on with the kids’ names that I know now. I am thankful for the people who take the time to donate what they can, because they know want to help against this war that we are in. I am thankful for all the love and support friends, family and strangers. Without all of them, things would not be happening the way that they are.

So, today we packed up our car and headed out of AZ. Out of our house that is slowly killing me. I could not get out of that state, fast enough. I could not take another day of walking past your empty room, not hearing the pitter patter of your little feet or your squeaky little voice. I don’t know how I’ll ever get used to not having you around. I feel like I am a shell of a person. I feel like I am a shell of a person yet I look back on last year and fuck… even that kind of scares me because I was in such a bad place. I think I spent the majority of the summer, in bed, crying. I think I was out doing crazy things like swimming in the ocean in the middle of the night and taking way too many sleeping pills. Looking back, I clearly was trying my best not to live. I seriously could have cared less. This year, I’m not better. Because you never get better from something like this. I’m just different. I want to be around to tuck your brothers in at night. Last year, I did not. And I don’t think it’s such a good idea to go swimming in the ocean, at night. But I am also aware that I still have that streak of crazy that exists in me and I never know when it’s going to come out which in turn usually means my pain needs to be fed by something other than sheer pain. Usually something crazy like a night swim or this marathon that I am running on Sunday and I have not trained a lick for. 26.2 miles without training is a little insane. But whatever. So is watching your baby throw up in bed from the chemo poison that is being injected into his body that is supposed to be saving him, but it turns out, is not. That is truly fucking insane. So is driving to San Diego with your baby’s body burnt to a crisp. Nothing is more insane than that.

We arrived here. Unpacked. Your brothers were hungry. We headed out to go to Costco but it was closed. Your starving brothers could not wait to eat and IHop was our best option. We ended up there where your brothers enhaled bacon, waffles, eggs, pancakes… you name it, they ate it. You would have loved our little breakfast for dinner outing. I was sitting there, thinking about Ava. I’ve been checking in on her all day through Facebook and her Caring Bridge. Nothing had been posted. Just as I was thinking about her, I got an alert on my phone. I read it, felt the color drain from my face, excused myself from the table and into the IHop bathroom I went to puke my guts out. I read the words, the Ryan House. Hospice. Not doing well. That was all I needed to see. It was if I was living last year, all over again. Fucking fuck. No. Not again. What is happening? Why is this monster taking all of these babes and nobody gives a shit? Because if they did, this would not be happening at the rate it is. Do you know what this looks like to us parents going though this? It looks like somebody is lining up these kids, one by one, and blowing their brains out. If that were the case, this country would be in an uproar. But because childhood cancer, is such a dirty little secret, everyone can just look the other way. That’s not fair. That’s not right. People need to start stepping up and making such a stir about this so that funding will be a little more fair. Give these kids a chance to grow up and get things like breast cancer or prostate cancer. Give them a freaking chance, you fucking idiot fuckwads.

Back to Ava. Back to the Ryan House. I’ve been quiet about this for a while. I am not going to say I am thankful that we got to go there, because no parent should be thankful that their child is dying, so they get to take them to this place. Ronan. The Ryan House, should not exist because kids should just not die. If only it were this simple. I did not think we were taking you there, to die. But everyone else knew around us. I thought we were taking you there, to get your pain under control. I was in shock. I still had hope. I heard the whispers all around me. I got the whole, “You are so calm.” Of course I was calm. You were not going to die. I was still going to fix you. I didn’t understand any of what was going on. I remember being confused as to why everyone was coming to see us. I felt like we were zoo animals on display. Like I was the mama bear in her den with her baby, hiding behind a glass wall, while everyone on the outside, was looking in at us. I didn’t know they were all coming to say goodbye. I didn’t figure any of that out until probably a day before you died. That we were not going home. I remember thinking that nobody knew what they were doing. Why was I the one asking for oxygen for you? Why was I the one calling your Dr. Maze to ask him what to do for you, in order to get your pain under control? Why were you getting all bloated? Why were you not peeing? Nobody told me this was all because your body was shutting down and you were dying. Nobody explained anything to me. And then it happened. Your little heart, stopped beating. Somebody came in after you had left. They brought in a tub of water. They said they were going to give you a bath. I remember looking up at them and saying, “No you’re not. I’m going to give him a bath.” I remember this person saying to me, “You are very brave.” I looked up, dumbfounded. “I’m not brave. I’m his mom.” I bathed you. I dressed you. I kissed you. I didn’t hold you. I didn’t know I could have. I didn’t know I could have rocked you. Held you or spent as much time with you as I wanted to. I wish I would have known that. I think I stayed in the room for a while with you. But I let somebody else pick up your body and take you away. I wish I would have done that. It was not anybody else’s job. But I knew none of this. I am so sorry.

Then we left the Ryan House. Bye! Have a nice summer! I think we were checked on and I know we were refered to a place called New Song. But nobody from the Ryan House ever mentioned the MISS Foundation to me, which blows my freaking mind. Ummmm… hello. They work with bereaved families. Ummmmm… hello. I know you are aware that they exist and I know you know who Dr. Cacciatore is, because she is a badass and truly has a gift for helping these families. Where was Dr. JoRo when I was at the Ryan House? Why didn’t anybody ever offer her to me, to hold my hand through what it is, that she knows best?? Why is it, that out of sheer desperation for my life, that I had to find her by screaming in bed one day, not able to get out and googling, What to do if you have a dead child in Arizona? I don’t know. This is what this woman does and she only does this for the fact that she truly wants to help these families. This is not about the money for her. This is only about taking her pain, experience, sadness, compassion, and using it for good. That is the thing that upsets me most. She saved my life, yet I had to find her on my own. There is a very good chance, that I would not be here if I had not found her. I thank you, Ronan, for helping me get to her. But it shouldn’t have been that way. Somebody at the Ryan House, should have offered her to me. She is a gift and I was in shock. I would have accepted someone to walk me through the hell I was about to go through. Instead, I went though it scared, abandoned, and alone. That’s the truth. There were so many mistakes made though out this whole your child has cancer, process. I am not going to stop until they are all fixed. Dr. Jo will be a part of everything that I do. She is part of my fixing the world, package. It’s as simple as that.

I went for a little run tonight. I talked to you about Ava. Please do everything I asked. Now is not the time to rebel, little one. She needs you. Take good care of her. I will try to help her mama in anyway that I can, but I feel helpless. There is nothing that I can do or say that is going to make this easier. All I have to offer her is I know what this feels like. And I am not dead from the pain. I am still here. That’s all I’ve got. That and I am just so sorry. I love you, Ronan. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo