A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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San Francisco baby steps

Sitting on our plane back to Phoenix as I write this. This is something straight out of a movie. Yes, my baby has cancer. He is sound asleep beside me. As Woody and I watched him sleep, we held hands and talked quietly about all the decisions we have to make. I looked up at Woody and said, “He cannot die.” Woody looked at me and told me, “He’s not going to die, I won’t let that happen.” I then made him promise me. He promised as he squeezed my hand. Woody has yet to let me down in my life and I know he’s not going to start now. It is so unfair that my husband has to carry this huge weight around with him of something he has no control over. This ugly monster, Neuroblastoma, is trying to ruin our lives. But we won’t let it. It won’t win.

I left Phoenix with fear in my heart and tears in my eyes. Woody was trying so hard to make this a fun trip for us and I was trying not to get annoyed at him for keeping things light and cheerful. I tried my hardest to go fight him on having fun. Eventually, he won and our 24 hour trip turned into a really good time. We arrived to San Fran, grabbed our rental car, and headed to our hotel. We checked in around 8:30 p.m. and Woody headed out to one of his favorite record shops, which we happened to be staying right next to. He was like a little boy in a candy store. I stayed back at the hotel and Ro and I put on our P.J.’s and waited for New York Miss Macy to arrive. Ronan was so cute and excited. He kept staring out the window of our hotel, watching for her arrival. Soon, there was a knock at the door and Ro rushed to open it. There was our beautiful Mace, with her bright eyes shining and hugs all around. She came, once again with the best treats for Ronan. Including a bag full of candy, and Ronan’s favorite; candy corn! We all 3 cuddled up on our bed, played, laughed and talked. Woody came back with a bag full of old 45 records for his collection and some new C.D.’s. Macy was very excited about his findings and they started comparing favorite bands, concerts, etc….. Such a nice, normal night. For once, it was almost like the cancer cloud wasn’t hanging over our head. I notice this happens a lot when Macy is around. She brings such a positive light to our world… One that I don’t see very often anymore. She has the spirit of a child but the soul of someone wise beyond her years. When I am around Macy, I find all of our troubles disappear for the time being. Such a gift to me. Macy ended up going home around midnight and we all 3 curled up in bed and slept until 8 the next morning. One of my favorite things about Ronan is how he wakes up. It’s the same way everyday. It’s always him, touching my face, smiling at me, and saying, “Good Morning, Mom!” It is so simple and pure and he is always so happy. It’s as if he knows another day of life is here and he understands how precious each day on this earth really is. He is always so excited to wake up and see what the day has in store for him. Breaks my heart that most of his days are filled with hospital visits and doctors appointments. This doesn’t dampen his spirit though…. he knows how lucky he is to be loved as much as he is and surrounded by so many beautiful souls.

After we got up and ready this morning, Ro and I headed downstairs for breakfast. Macy soon joined us while Woody worked. As I was telling Macy about our adventure for the day, it occurred to me that she must come with us. We had a tour set up at Lucas Studios thanks to the ever so gracious, Lynne. Our tour guide, Chris, was expecting us at 11. Macy and I both looked at each other and knew instantly that she should absolutely come with us. I called Chris to make sure this was o.k. and he was so kind to say it was. The next thing I knew, we had totally hijacked Macy for the day and we were off and running to Lucas Studios. It was amazing! The studios are nuzzled in the middle of the city, but hidden in what I swear is its own little fortress. The views were to die for. We took our time strolling around outside, enjoying the sunshine and ocean air. We met Chris and he took us around for over an hour and a half. Ronan was in heaven, but I think out of all of us Woody enjoyed it the most just because he appreciated all the history behind it. Ro had a blast and was even left some gifts by Captain Rex himself. He was over the moon about his new light saber and toys. He finished off the day by chasing us all around and showing us his super cool Jedi moves. He had us all in stitches. Thank you so much, Lynne for this day. It will be one we will never forget.

After we left Lucas Studios it was time to head to UCSF to meet with Dr. Matthay. We dropped Macy off at her car and said our goodbyes. She may live in San Francisco now, but she will always be New York Miss Macy to me. I am so happy we were able to spend the time with her that we did. It meant the world to all of us and we can’t wait to go back for visits and to have her closer to AZ to visit us. Spirit Hoodies will reunite 😉

On our drive over to UCSF, I could tell Woody was as nervous as I was. We arrived right on time and sat in the waiting room for our consult. Dr. Matthay soon came out to greet us and we were taken back to a room to talk. I felt very comfortable with her instantly and I loved that when she went to examine Ronan, he went right to her as she scooped him up in her arms and set him on the table. We went over his history and his scans. She told us she did not want to give us a formal recommendation as far as his treatment goes because she wanted to look over his things a little more thoroughly. She is meeting with her board tomorrow and Ronan will be the topic of discussion and from there she should be able to tell us what she thinks our best options are. We talked today about what she thinks she would want to do and I fully believe in what she is saying, as she has the statistics and data to back it up. This woman means business. She eats, breathes, and lives everything Neuroblastoma. It is her life and I have no doubt she knows what she is doing. The question is, is it the right path for our son? We are still not sure, but are very open to listening to what she has to say. So, did I find the clarity I was looking for on this trip? Not really. I do know that our next step will be to go out to CHOP in Philadelphia to get their opinion as well. We are taking baby steps with this decision. Right now, we are still gathering all of our information and feeling things out. I am glad we went to San Francisco and we are not closing that door…. but I’m not getting the gut feeling I was looking for. That’s o.k. though because I feel as if San Francisco will lead us to where we need to go next. We would like to get out to Philly A.S.A.P. and then meet with Dr. Kusher at Sloan once again. The bottom line is, nothing will be decided until we do Ronan’s next set of scans. We just need to make sure we are fully prepared for our decision when the time comes depending on what his scan results show.

Yowzer. That was a lot of writing tonight. So tired. Beyond words, but I had so much to say. Love you all. Thank you to all of you for keeping up with us. Thank you to all of our beautiful friends for helping us through this. Thank you to my in-laws for taking such great care of my precious twins. We are so lucky, thankful, and blessed to have you all. Sweet dreams my dears.