How could my love not be enough?

Who would be so cruel to to this to us? To him? I don’t want him in the arms of “Jesus.” I only want him in my arms for the rest of his life, which should be a long life, where he belongs. I don’t want to watch this cancer eat away at his little body while I can do nothing about it except for sit back, watch it happen, and keep him as pain free as possible. I don’t want to have to go home and explain to my twins that their baby brother is hurting and that the medicine is not working. How the fuck am I going to do that? This baby is their entire world and he completed our perfect family. There was always something missing until he came along. He has added so much happiness and laughter to our lives and now we just get to sit back and have it taken away from us?  That is bullshit and I am so mad. If prayers really worked, my son would be healed because I have been on my knees praying since the day this happened, day and night, night and day. And I know thousands of you have done the same thing as well. Why isn’t it working? Who would be so cruel to take away this precious gift of mine? How is possible that there is nothing left to do except enjoy the time we have left with him? I feel like a failure. I failed my son. How is it that my love is not strong enough to save him because I have never loved anything more in my life. I’ve  fought so hard to keep him here and now what? It doesn’t matter because as Dr. Mosse said, we may only have weeks left with him. How in the world can this be true? What am I going to do with not hearing the little pitter patter of his feet running around the house? What am I going to do not having his big blue eyes to look into? How am I not going to hear him say, “Mom! I love you to the moon and back?” How am I not going to crumble up and die?

How do you plan a funeral for your 3-year-old? I’ve already started that process, sending out crazy texts to Tricia and Fernanda blabbing about how this has to be something different, it cannot be a circus, it has to be small because Ronan never liked a ton of attention. Nobody is to wear black, everyone has to wear something colorful and bright because that is what Ronan brought to our world. All I want is a miracle and to not have to think about any of this, but we are facing our worst nightmare and have to be prepared as we do not know what the future holds. If the future holds my Ronan leaving this earth, well that is something more than I will know who to handle. And I don’t want to hear about him “earning his fucking angel wings.” I HATE THAT SAYING. No child should ever have to earn their wings; ever.

I spent most of today cuddled up in bed with Ro. He was back to his feisty self, playing and had his bossy boots on all day long. We have his pain controlled. Woody and I both spent the day taking turns breaking down. We seem to balance each other out so well. He would cry and I would be strong, and vise versa. He sat and stroked my hair while telling me that there is nobody he would rather go through this with than me. We made this cancer with Ronan such an adventure, enjoying New York and taking on the world while never letting go of hands. Somehow, our love for each other will get us through this. It just has to. My husband is too good of a man and I refuse to fail him too, but all I really want to do is dig myself a deep hole and never come out.

I’m sorry . I’m not very inspiring tonight as I just feel a ton of anger. I really need to punch something because this is so not the way I saw things going. I was always so sure that Ronan would beat the crap out of this disease. I still feel that way. I am not leaving his side, ever again. I’m not going running, shopping, to the movies, or out of my fucking house unless he comes with me. I will not miss a second of being with him. I will hold him and love him and kiss him until he gets annoyed and tells me to knock it off like he often does. I will not give up.

We are flying home tomorrow thanks to the most beautiful family that has been put on this earth. You know who you are my dear, sweet girl and I hope you know how grateful we are. Please give your hubby an extra big smooch tonight as you two are absolutely the most selfless people I have ever met. Who else in the world would make such a thing like this happen at the drop of a hat? Nobody. It is because of you, that we will get to bring our very sick, precious boy home without the eyes of strangers on us and with him being as comfortable as possible. Thank you, Dolly. I love you.

As we get home, there are so many of you that we would like to see, but we have to keep things at home as calm and peaceful as possible. So, if you would like to stop by, please call first and don’t be offended if we tell you no. It’s not out of anything but love for our son and we have to make sure he is as comfortable as possible. A lot of people and house guests seem to do nothing but stress Ronan out and that is the last thing we want to cause. We need this time together, more than ever. And please, if any of you see our twins, don’t mention anything about this to them. Woody and I have to be the one’s to sit down and somehow find the words to explain this all to them. This breaks my heart more than anything. We will do our best as parents but nobody can prepare you for the conversation that is about to come. Just thinking of the look in their eyes is enough to kill me. Our family was never meant to be a family of 4. NEVER NEVER NEVER.

I am so sad. Sad beyond words. All I want is to get Ronan home and back with his brothers. Back to his house. No more clinic visits or hospitals. Enough is enough and the only things that will heal him will be a miracle from above. If my love could save him alone, we would not be in this situation. I will never understand how my love has not been enough.

Thank you all for your continued love and support. We will keep fighting and do whatever it takes to make Ronan the happiest little boy on this earth. We will never give up on him.

Love you all.

xoxo

And P.S. FUCK the royal wedding. Really, 16-64million dollars? That makes me sick to my stomach. This world needs to get a clue as to what is really important in life. All that money could be spent in such a better way, like saving the lives of millions of children. I’m embarrassed and ashamed for them. I hope their child never gets cancer and they never have to deal with something like this. With all that money, a cure could be closer to being found.

Princess Leia and Captain Rex take on the world… or at least the halls of Sloan-Kettering

Last night was a little better than the night before. We have had a really, really, extra sweet nurse, Alex, the past 2 nights. She is adorable, looks like she is about 12, and really gets along well with Ronan. She is super patient with him, very calm, and is very doating. He meshes well with her which makes it nice on my part. All of the nurses are great here, but Ronan seems to have a connection with Alex. Reminds me a little of Arica back home, one of our favorite nurses on the floor of PCH. Miss her. I asked Alex what we could do last night to make sure we had less beeps. She tried her best, but the stupid “asspole,” went on beeping most of the night. “Inclusion in line, Inclusion in line!” is what it said. Which basically means there is a bubble in the fluids he is getting which causes it to beep every half an hour or so. Very disruptive and as my Charisma would say, “RUDE!” Ronan also had to be woken up twice to be given his morphine, which was not fun at all. He was a very mad little boy about it. After about 20 minutes of fighting, he swallowed his medicine and went back to sleep. Seems cruel to wake a sleeping child but rules are rules around here.

My mom came to relieve me around 11. Ronan was in a much better mood this morning when she arrived. We were sitting in our bed playing, when we got a special delivery via fax. A message from our very own “A,” back home! It was the sweetest note written to Ronan from her. I read it out loud to him and he got the biggest kick out of it. She even drew a monkey at the bottom of it for him. So sweet and thoughtful of her. It made both of our days. After our special letter, I gave Ronan his bath. He once again, sat and bathed all of his Star Wars guys which kept him busy. I told him goodbye and slipped out for my daily break. So thankful that my mom is here to help. She has had a lot of nice bonding time with Ronan. It is special for both of them. I went back to the RMH and thought about going on a run, but my left shoulder was killing me today. I decided to go around the corner to the Asian massage parlor I discovered a couple of weeks ago. It seriously looks like something out of a sketchy movie, but one thing I love about this city is you can never judge a book by it’s cover. It is the cheapest/best massage I’ve ever had in my life. Forget that there is almost no privacy as you are separated from other customers though sheets hanging from the ceiling that separate your beds…. the two times that I’ve been there, the place has been empty. A very well hidden secret I suppose 🙂  The women there give the BEST massage I’ve ever had in my life. I left there with still some pain in my shoulder, but it is better than it was. Thank you, ah sookie sookie now. (that was for you, daddy woo)

I returned to Sloan to find my mom chatting with Dr. Kushner. He stopped by to check in. We talked about Ronan and how great he looks and he told me him not having an ANC for this long is normal, considering all he has gone through. He also told me it’s great to see how well he is tolerating the chemo as he does not look like a sick child whose just completed his 8th cycle. He is such a tough little man. We talked a little more about our plan of attack but nothing will be confirmed until we see the results of Ronan’s scans, which are next week. Scanticipation begins. UGH. Dr. Kushner also sat and talked to me about running, because he is an avid runner himself and we usually always talk about it. He gave me some great Central Park tips which I always enjoy. He really is a very nice man.  Every time I look at him, I can’t help but obsessing over how brilliant he is. I cannot imagine the way his mind must work…. he has revolutionized so many things in the Neuroblastoma world. I really have to focus when I talk to him, otherwise I catch my mind wandering thinking about how he does what he does, eats, breathes and sleeps this disease everyday of his life. I’m curious as to how he came upon devoting his life to Neuroblastoma. So many questions, never enough time.

While I was out today, I caught up on things like mail, bills, emails, phone calls, etc…. I got to hear the voices of a few of my dear friends…. Fernanda, Tricia Boo, Niki, Danielle, Marisa, Pam, Amy, Lindsey, Auntie Karen, and Mr. Sparkly Eyes. I don’t get a lot of time to talk on the phone here due to being at the hospital so much. When I’m out alone, walking the city, I try to return a lot of my calls. It was so good to talk to my friends today. Good to hear their voices and to check in. Miss them all much.

Ronan and I spent tonight like we always do. We walked the halls for about an hour, shooting anybody that came our way. He was Captain Rex and I was Princess Leia. The nurses, janitors, doctors, patients, are great at playing with us. We came back to our room, played Star Wars, then called Liam and Quinn. It was good to hear their voices and I always love to hear the conversations between my 3 monkeys. Adorable. I cuddled in bed with Ronan and we sang “Twinkle Twinkle Little Star,” together just like we sing every night while I rubbed his back. It didn’t take much for him to drift off to sleep… it’s late here, midnight now and he fell asleep only about a half an hour ago. Sweetest dreams to the sweetest little boy. I whispered that I loved him to the moon and back and kissed him on his cheek. He tastes like milk and sugar.

My Tricia Boo is taking the Red Eye here tonight. Cannot wait to wrap my arms around her! She is staying until Sunday and Niki got in today as well. Double YAY! Niki is here with her kiddos and I am going to try to see them tomorrow. I only wish Ronan would be discharged so he could see his friends too 🙁 Keeping my fingers crossed that it happens by this weekend. I was telling Mr. Sparkly Eyes tonight that we have been inpatient for almost 3 weeks now. He feels awful and wanted to know how I was doing. I tried my best “Mrs. Positive Attitude,” and replied that I was making the best of it. He then went right to, “Cut the bullshit and tell me how you’re  really doing.” Can’t get anything past that man and it made me laugh out loud. I am such a fan of the bluntness. How am I doing this?? I honestly have no idea. I texted Woody in the middle of the night 2 nights ago to say if he didn’t bust us out of here I was going to murder someone. I have my moments of temporary insanity, but then they are usually quickly washed away by a flash of happiness, gratefulness, or beauty that comes my way… even if it comes in the form of something as small as Ronan telling me I look pretty and thanking me for being his mom. I swoon for his little, kind words. They mean everything to me.

Alright my sweethearts. Tired tonight and going to try to get some rest. G’nite and sweet dreams to you all. G’nite my Big Daddy Woo. Enjoy our cozy bed and cuddle up to my Liam and Quinn for me extra tight. I LOVE YOU AND MISS YOU SO MUCH.

xoxo

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)