A Sea of Sadness

 

 

Ronan. Hi baby. I’m waiting to board my flight back to San Diego. It’s late. I had to leave you tonight and somehow I made it to the gate of the plane. I had an o.k. day. I kept busy and luckily I had enough things around Phoenix to do to keep me that way. I ended my o.k. day with dinner at my favorite restaurant, Chelsea’s Kitchen, with my lovelies, Tricia, Danielle, Marisa, and Stacy. It was a good dinner and it felt good to be with my girlfriends. Tricia took me back home after dinner and she and Marisa helped me pack up my things to get back to San Diego. I didn’t have much to pack, but they helped me with little things too like making my bed and picking up little things here and there. I kissed your urn goodbye and told you I loved you. I had a hard time leaving the bedroom where you sit, all alone in the dark. I didn’t want to go. Marisa left me with a hug goodbye and an I love you. I miss her so much. As soon as I sat down in Tricia’s car so she could take me to the airport, I started to bawl. I stared at your bedroom window and all I could think about was how you were never going to play in there again. Tricia pulled out of our driveway and held my hand. I cried all the way to the airport and said things out loud to her that I don’t really say to other people, but I think in my head all the time. She asked where I thought you were. I told her I didn’t know and how hard that is for me. She told me that she thinks you are always with me. In my heart of hearts, I think that too, but it doesn’t ease the pain any less. When we got to the airport, she insisted on coming in with me instead of just dropping me off at the curb. I didn’t put up a fight.
She walked me to security where we both cried, hugged, and she told me how she would never let me go. How we will get through this. How much she misses me. I just held her tight and told her I knew. I hate so much, that you, her first godson, are gone. I will never forget the day I asked her to be your Godmom. It was such a special moment in my life.  I hate how badly she hurts. She was with your Daddy and I when you came into this world. She was the one holding my hand with your Daddy as I screamed for another epidural. She saw how perfect you were after you were born. And then she stood with me as you were diagnosed with cancer. She held my hand through everything and watched as you got sicker and sicker, but refused to believe the worst. She watched the worst come true. She watched you come into this world and she watched as you left. Along with feeling the pain of missing you, I feel the pain of everyone else around me too. How can one person be given so much to handle in life?? How am I expected to survive this when not only do I feel like dying because you are gone, but because everywhere I look, I see nothing but sadness and tears in everyone else’s eyes. I am swimming in a sea of sadness and all I want to do is drown. I don’t even want to use the word, unfair anymore because that is such a weak word. This is beyond unfair. It’s mother fucking fucked up.
 Today, as I made it though the day without crying, I sat in the waiting room of my therapists office and I was going through all of my new emails. I saw one that was from Dr. Mosse from Chop. She sent me a real, heartfelt email that said things such as she hoped it wasn’t  too disruptive or painful to hear from her. She simply wanted to reach out and say hello, to let me know that you are in her thoughts as she comes to work everyday and thinks of you as she works harder to find a cure for Neuroblastoma. For something so simple and so little, it meant the world to me.  I started crying as I read her words and sent her a quick email back to thank her for taking the time out of her very busy life to check in on us. I told her how I am struggling and a big part of this comes from the what if part of if we would have chosen her path, for your treatment. I told her that I will always second guess our decision. I told her how I was sorry because I didn’t listen to my heart after our first meeting with her. When we first met Dr. Mosse, I sent Fernanda a text that simply said, “It’s her. She’s going to be the one to save our baby.” Then we went out to New York and met with Dr. Kushner, whom I really liked. Whom I really believed too. So, I shoved my “gut,” feeling down as far as I possibility could and ignored what was in my heart. I will always wonder, what if. Your daddy and I have gone over and over this. He is sure if we would have went to CHOP, that your outcome would have been the same. The bottom line is, we will never know. We will never know and you are gone. Something has to be done about this. Someday, a cure has to be found for this disease and it has to be understood because no family should go through something as horrific as this.
Tonight, I feel weak, scared, and sad. Tonight, the feeling is back like I cannot breathe. I would like to go to sleep and never wake up just the way you did. Tonight, the pain of being on this airplane all alone, without you, is just too much. Where is my Bryson friend when I need him? There are no Bryson’s on this plane tonight. It is full of people. People who are busy. People who are happy. People who are unhappy. People who are unsatisfied. People who don’t care. People who have no idea how many children die of childhood cancer everyday. People who have no idea what it means to truly feel, to truly live, to truly be grateful for every little thing they have in their lives. At one point in my life, I used to be like these people. Unaware of how precious life TRULY is, because life just WAS. It was a given, not a gift. I never took the time to fully understand how precious life really is, how precious every moment in life, no matter how good or bad truly is because whatever it was…. I was alive and I had 3 healthy children and I never second guessed that things would be any different. Now I know. I know because you are gone and I am the closest to knowing what it feels like to being dead, while being alive. I don’t want this life without you, Ro. But I also respect that this life is not my choice and I cannot decide when it is my time to be with you again. I respect that I have to take care of your brothers, your daddy, our friends, and family. I have a lot of people who I cannot let down. I cannot let you down either.
So sorry for the pity part tonight, my love. I will push though this, pick my head back up, and stay focused on the job that you have given me to do. I refuse to fail you. I love you, Ronan. To the moon and back baby boy.
I wrote that last night, Ro. But was too tired to finish it. I had a hard day today. We spent the day moving out of the unit that we have been in for a month and into a new unit. It’s a different building, overlooking the bay, and it is pretty much the same layout of the unit that we stayed in over here when you were just a year old. This has opened a floodgate of memories for me and I have spent the majority of the day crying. As I was unpacking the car with your daddy, he noticed my tears. He picked me up off the ground and held me for a long time. I hate everything in our new life that we are doing without you. I hate that today, I unpacked the car without having to worry about you running around crazily in the parking garage, as I pictured myself having to chase after you to make sure you wouldn’t be hit by a car. Today, I had none of that worry and it is all I wanted.
Once we got settled in our new place, we went into town to eat. We ate at our favorite Burger place here, just the 4 of us. You would have loved the chocolate milkshake that I shared with Quinn. It had a ton of whipped cream on it and your brother laughed as I fed it to him. You used to LOVE your whipped cream. After we had our lunch, we ran into the grocery store to get a few things. As I was walking through the frozen food aisle, there it was. Your Fettucini. I felt like passing out on the spot. I stopped and stared at the Marie Callender’s Fettucini Alfredo that you lived off of while we were in the hospital at PCH. You always hated hospital food and I cannot count the times we would cook this in the microwave together and how happy it made me to watch you gobble it all up. It was the one thing I could always count on you eating. I loved feeding it to you because of all the calories it had in it. I’ll never be able to look at that Fettucini the same again. I’ll never be able to look at a lot of things the same again.
We came back to our unit and tried to get unpacked a little more. Mimi and Papa came over to take Liam and Quinn to see “Cars 2.” Your daddy tried to talk me into going out on a date with him, but I couldn’t muster up the energy to go anywhere. I was just feeling too sad today. I did get out for my nightly run though. I did my usual route; a fast 6 miles. Around mile five, I started to feel sick to my stomach. You know me and my notorious throwing up ways if I run too hard or too fast. Luckily I found some nice bushes out of sight from anyone and out came my one meal of the day…. lunch. I finished the last mile and now here I sit. I still feel sick to my stomach and I’m sure it’s from the combination of you being gone and pushing myself with my 8 minute mile tonight. I had a lot of anger to pound out on the pavement and it seemed as if my feet were on fire. Too bad my body decided that it was too much because it felt pretty good. I haven’t run in a few days which always makes me extra anxiety ridden, depressed, and leaves me with extra nervous energy that I don’t need. I had to get that out tonight otherwise I was going to end up doing something drastic; like eating a bag of donuts.
Alright my little man. This is all for tonight. I miss you so very much. Sweet dreams and I hope you are safe.
P.S. A very Happy Birthday to my dear Laura Leigh Chase. My friend since we were 14. My friend forever. I’ll never forget the day in our 8th grade P.E. class when we got “married.”  It was the most gorgeous, sunshiny day outside and we skipped off, holding hands, and went to pick the flowers on the side of the hill instead of participating with the activity that we were supposed to be doing. Instead, we decorated each other with flower hippie headbands and had some pretend to marry each other ceremony. 17 years later and here we are, mama. I am so proud to still be able to call you one of my best friends. I love you. And I am so happy you married Kasey in real life. Have a beautiful day my dear, sweet friend.
xoxo

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

Open Your Eyes

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you