Today is 28 months without you, and it’s pouring down rain in AZ — naturally. You always bring me the rain when I am the saddest. I was up on and off through the night, waiting for that 3:25 a.m. time when you left this world. I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister, who was sound asleep beside me. No screaming and crying fits are allowed when a peaceful baby is sleeping next to you. I sent an email to Sparkly instead and screamed and cried to him. FUC. I hate cancer.
Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell, it was hard, as I have not hiked Camelback since I was about eight weeks pregnant with your sister. It felt good, though, and we totally made it a danger day since it was dark when we were coming down. Dr. Sholler is such a badass — she was fine with it. We talked a lot about life, loss, this cancer world, and how wrong it is. I like spending time with her not only as a doctor but on a personal level as well. I’ve never met a doctor like her who is just as passionate about her research as she is about the kids she is treating. She never forgets the faces behind this disease, which is a big reason why I love her so much. She won’t ever forget your face, and she never even got to treat you. One of my biggest regrets in all of this is that. But as I am learning, regrets in life will get you nowhere. It’s about moving forward and making the changes you can with the cards you are dealt — even if it is the shittiest deck.
Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor, who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this make me so happy, yet so sad too. Your Brianna Boo, who loved you so much, has finally moved here, and we get to do such fun family things together — all while you are not here. I spent all Friday night and Saturday morning doing her laundry. Your Daddy and I cooked her homemade meals. Everyone went to your brother’s basketball game, and I took the girls for mani-pedis too. All while you are nowhere to be found, and I still have a hard time wrapping my head around this reality — our reality — which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality you never get to escape from or take a break from. It’s a reality that is a lot to carry around, and the load never gets any lighter.
But hey, thank you, White House, for saying NO to our little petition. And thank you, Empire State Building, for also denying our application to light it up gold one day in September. So nice to know you will turn the Empire State Building orange in honor of Nickelodeon on September 16th, though. BARF.
Are you freaking kidding me? This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5,000 applications, they will listen. Here is the form if you so kindly want to fill it out:
Click to access ESB_LP_Questionnaire_FINAL.pdf
Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it, and one of the producers I’m working with is awesome. I sent her a little email this morning just to cover my bases. It went a little something like, “Hey, CeCe! Can I cuss on air?” She replied with something funny like, “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer reminding me that no cussing was allowed, so that is precisely what I did. It worked like a charm — no F-bombs were dropped. They are going to check in with me every couple of weeks to see what we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red-lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud every day, because making you proud is what I live to do.
It’s still pouring down here. After a very productive powwow lunch with your Poppy sister in tow, I’ve decided that throughout this journey — adventure, or whatever you might call it — I am still learning some very hard lessons. Lessons that are hard. Lessons that are sad. Lessons about how I need to be a little more protective of myself. Lessons about how people, at the end of the day, do not have my best interests at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause and taking away from what you are doing because of your dead child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to let all of this go, because at the end of the day, we are here because of your dead son, and anybody who takes away from that is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me, and at the end of the day, I have no more energy left to take on others’ issues.
It’s days like today that I am just so fucking over the petty BULLSHIT.
Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met. He said something like, “You are a hero. You helped to save her life.” I listened to him go on about how a little girl came into the hospital and, as he was treating her, this little girl’s mother got to talking to him. She mentioned my name and told your Sparkly that, thanks to me, her daughter may end up being okay.
Nela’s story started off much like ours. It all began with an “off-looking eye,” where the doctors told Nela’s mom it was just allergies and that she was overreacting. Nela’s mom said that, thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye, and it turned out Nela did not just have allergies. She was diagnosed with rhabdomyosarcoma, but luckily it was caught early at Stage 1.
Nela’s mom and I have been corresponding via email and, lately, through text messages. I’ve been trying to set aside time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids’ store the other day and loading Poppy into the car when I saw a mom across the street carrying a little girl who didn’t have much hair. I, of course, did a double take, as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was, and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes, and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment, but she had actually been trying to meet up with me that day anyway, so it worked out perfectly.
Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held your Poppy sister. She kept telling me thank you over and over again, even though she knows how I don’t like to be told thank you. I smiled and told her I was happy I could help and, if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment that my heart sank a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours.
And then my mind goes to where you are now — all ashes in an urn. No more bald head to kiss. No more blue eyes to look into. No more hands to hold, because they were burned to a crisp. Is that too morbid? It’s my reality. Try living with that every single day. It’s a wonder I am still here.
After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling, and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. “I miss him too. Come on, you have survived sadder days. You are going to be okay.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you over the next couple of days, all while I continue to fight on and go nonstop, because cancer doesn’t sleep, so why should I?
Ronan. As you can see, I started this days ago. I am exhausted tonight, and I finally had a great run with my friend Katie to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine, and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.
I miss you.
I love you.
I hope you are safe.
Nela, you give me hope.
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