Tag: Gatorade

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

xoxo

I’m kinda liking this Philly place

First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.

I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.

I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.

Dear Maya – The Strongest Mom in the World!,

I think of you and Ronan every moment of the day.   From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts.  As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son.   Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.

I believe that Fate, Faith, and Love are amazing guides.   Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge.   Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments.   I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path.  I do believe that it is all a part of each step to make Ronan happy and well.  What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains.   Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize.   Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger.   When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure.  I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city.   It is those memories that make NYC a place of peace for Ed & I.  Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him.   You have done that!!!!  You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!

I always felt as if Jack was a gift given just to me.   His amazing life set my path and gave me forever strength.   He showed me what love was really all about.  He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person.     I know in my heart, you both will win!  You have already won by finding the strength to fight for each other.    You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace.   My angel is watching over your angel on earth!!!!

All my love and respect,

Dianne

I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.

Sweetest dreams!

xoxo

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.