You’re Having Headaches?? O.k. We’ll Go Get an MRI.

Ronan. I did a lot of things today. It was a productive day, to say the least. I LOVE my productive days the best when they are fueled by you, you and you. Always by you. I didn’t sleep well last night due to just normal stuff that deal with a lot now. It was much easier in my Ambien is the Devil pill popping days, when I could just say fuck everything and go into a black coma for hours. I gave that up long ago and although I am so very glad, I can’t say that I sometimes don’t miss the convince of it. I know the after effects of that little pill are just not worth it for me though as they usually involve me wanting to slit my wrists. I’d rather just deal with the insomnia.

I sat with your Sparkly for a long time today. I was frustrated about some things. Sad about some things. I go to my best non judgmental friend, for the best advice. I spatted out the things that were wrong. Nothing major. But my feelings were hurt over something silly. I was feeling sad about you. Guilty about this baby. A little family trouble too. A invitation came my way. A maybe trip to New York. I sat and talked with him about all of these things. I’ll sum up for you, what I got told in a nutshell which went a little something like this.

“Please don’t lost sight of it what it is, you are doing and why you are doing it. I don’t think that you will, but promise me, you won’t. You know the reason you are doing all of this. The only reason you are doing all of this. Keep focused the way you have been. Do not let all of this attention, change anything.”

“They don’t know the real you. These people that you are letting your feelings get hurt by. They only know what they read and the few times they have met you. I know the real you. You are so smart. You are brave. You are kind. You are outgoing yet introverted. You are shy with certain situations. You are so strong. They don’t know your childhood and what you have been through, which I know is a big part of what makes you, you. People want to see you fail. It’s ugly human nature. What you are doing is unlike anything anyone has ever done before. I really think you are going to completely change this world, darling. You already have, and you are only getting started. Look at all you’ve done. Maya. Who else in this world can walk around with Fuck You Cancer bracelets on their wrists and get away with it?”

I just replied, “No one. But maybe that’s because they just haven’t tried.”

He just looked at me and said, “Exactly. That is exactly what makes you so different. You did that. You did that within weeks of Ronan being diagnosed. You turned that into your thing, which is a metaphor for everything you are doing. You did it without caring, you did it because that is what you felt, you did it with your head held high and now look where you are. You were handed the shittiest situation in life. You could have given up a long time ago, but you stayed true to being honest and vocal about everything you are going through. Nobody does that. That scares the shit out of people. As much as I wish this wasn’t the hand you were dealt, this is your calling. Whether it be by God or whoever else is out there, you were given this because you will change this in a way that nobody else has.”

Tears started welling up at this point in his eyes. “Now I’m going to start crying.” I looked down at the ground. “Why? I said. “Please don’t cry. Please.” I watched the tears form in his eyes.

“Why…. because I’m sad, for you but so proud as well. I wish this wasn’t your story, I wish this wasn’t Ro.”
“I know.” I said. “I know.”

I told him about my New York adventure. Secret side Maya mission. He told me to book my flight. I will. Another little gift, from you that just fell in my lap and since I am such a believer in signs and timing, I am going out to our favorite city to pursue what it is, that is maybe in the works. See you in a few weeks, NYC.

This week has flown by with so many things happening. We totally won 50k from the Chase Grant contest!!!! We entered it so late, but thanks to all of you supporting us by voting and telling everyone you know to vote, we won!!!! We are all so excited, proud and thankful. A special thanks to my dear friend, Melissa for taking the lead on this little last minute project for us. Without her, this would have never happened. I truly am surrounded by the greatest people. I am so lucky in that regard.

My friend Katie let me have a little trunk show at her store last night with my “Spicy Monkey,” bracelets. We had such a turn out and I was so happy to finally meet some of my very best Ro lovers out there. Your Poppy has had me wiped out, but I powered through last night and it was a huge success. Thank you to everyone who came out to see me. I loved listening to you talk about Ronan. It makes my heart a lot less sad to listen to your stories of how he has inspired and changed you. I am so lucky to be your mama, Ro baby. You are doing the most amazing things in this world still. I miss you so much.

Last night left me feeling like I had been run over by a truck today. I had a lot to do and got through some things, only to come home so sick and tired. I fell into bed for a few hours. I didn’t want to, but I knew today I didn’t have a choice. Guess where I spent this evening. At PCH with Quinn getting an MRI. You know, because of his headaches, I am still convinced he has a brain tumor. It is so mentally exhausting to live in this world. This world of being overly paranoid about anything and everything. We will know in the morning if anything showed up. Your favorite PCH lovie called me before the MRI. “I’ll be there in the morning and I’ll call you first thing. I promise you, there is nothing there.” I responded with, “You’re telling me that I can sleep tonight?” He said, “Yes. Please sleep tonight. I promise, everything is fine.” “O.k.” I said. “I’ll believe you.” I am sure he is fine, but as you know, I can’t live in a world where I’m not 100% sure. Between last night and today, I feel like I need a major vacation… from life. Do you know where I can go for that? I do. But that’s not my call.

I had an ultra sound this week as well. I think I sat and cried most of my appointment. My nurse asked how I was feeling. I respond with sick, tired, and really, really sad. This led to about a 30 minute conversation about you. She knew a little bit about our story, but not the details. I told her most of our story, as best I could without choking on my words. It’s still hard for me to talk about everything we went though. The scariness of it. The darkness. The blind hope being ripped from my arms in the form of losing you. How everything spiraled out of control so quickly. How I didn’t even realize you were dying because I was so convinced my love would save you. We talked about this new baby and I told her that I’m not excited yet. I saw Dr. Schwartz who I think might be one of the most amazing women on the planet. She talks about you a lot which means so much to me. She told me how excited she was to see my name on the schedule and that I was pregnant again. She said she thinks everyone is so excited about this baby. I do too. I know there will come a point where I am as well. But right now, I just miss you so much.

That was my week in a nutshell, Ro. I’m tired from being a PCH tonight. I couldn’t go back in the MRI room with Quinn due to being pregnant. The memories of you, being in there came flooding back. Within hours, our whole life turned into a nightmare. Please let everything be alright with Quinny. I could not survive something like this again. I’m going to try to get some sleep now. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

;

Little hands, little feet, and I swear I see a Poppy smile!

It’s a real life Poppy!

Ronan. So, in this life now without you, you know I’m not used to really good things happening. Even when really good things happen to me, they always come with me thinking the worst case scenario for what could ultimately go wrong. It’s a given in this new life without you. The one that I am left here living, where I thought you would never die, because our love and those doctors, would save you. How I absolutely knew that nobody would ever make us be apart because the love between the two of us, was so strong and unlike anything the both of us had ever known. Of course you were going to get better. Of course you were going to survive. Yet, somehow… that was not the outcome. I will never know why and even if there was a reason written out in black and white, it wouldn’t be good enough. Nothing in this world will ever be worth the death of you. But, some really amazing things are happening due to your death. It feels so wrong to write that, but it is the truth. Had you not died, the things that the world is spitting out at me, would not be going on.

I told your Sparkly the other day, “If Ronan had to die, you can make damn sure I am going to make something amazing come from it. He will change the face of childhood cancer.” I hate that it had to be you. But baby, just maybe, someday, another little boy or girl won’t have to die from this disease because of the awareness you are bringing to it. We as a foundation, are preparing the best we can for all the good you are bringing. We’ve had a fire lit under us in the best way possible. I am thanking you, our love, and the most amazing people in the world who are so touched by our love story, that they want to help us change this. I am so amazed at the way you are still inspiring so many… but I was your mama, so it’s not surprising to me at all, Ro. Your beauty and spirit lives on through so many. I am trying to find comfort in that as much as I can. It truly is what keeps me going.

I had my first ultrasound today. The one where I got to see, (insert british accent here)”Poppy!” in a picture for the first time. Your daddy went with me. We were waiting for my OBGYN. The one who delivered all 3 of you. I was nervous. I told your daddy I expected there to be no baby, or for this baby to die. Am I an awful, wretched human being for saying those words? I thought I was for about .3 seconds, but then I decided I was not. I just know the worst now, so those thoughts are a given. Your daddy said, “The baby is not going to die.” I wanted to say, “That’s what you said about Ronan,” but I bit my tongue.” We went back to the ultrasound room. I wondered if Dr. Schwartz would bring you up. I had a panic attack thinking to myself, “What if she doesn’t acknowledge Ronan and what happened?” That would have destroyed me. She came into the room, Yelling about how she needed to make sure there weren’t two babies in my stomach. The mood quickly shifted after that after she told us she knew we had been through the ringer and how sorry she was. She asked a lot of questions about how I was doing, feeling, and if I was still depressed. I told her I don’t think it’s depression after losing a child. I think it’s just a heavy grief that one will always have, but I am learning to manage it. She asked about medications. I told her I wasn’t on any. Your daddy piped in about Ambien but quickly corrected himself saying I hadn’t taken any since before Washington. So glad I threw that shit away. She asked if we were excited. I just answered her as honesty as possible. I said I was more just scared and nervous. She said she understood starting going on and on about how she knows I am going to have anxiety with this baby, times a million. She told me she would do ultrasounds on me every week if that’s what I wanted. I don’t know if that will be necessary, but I appreciated the offer. I cried a lot during my ultrasound due to missing you so freaking much. I heard Poppy’s heartbeat and I wish I could say it filled me with so much happiness and joy, but it didn’t. I am trying not to be too hard on myself. I know this is going to take time. Don’t get me wrong, I am happy. But my happiness comes with just as much sadness, too. I’m not going to pretend like it doesn’t and I’m not going to beat myself up over it. It is what it is, Ronan. This baby will be good. I know this. This baby is going to be so unbelievably loved. This baby is going to be a part of you and what could be better than that, besides yourself? I love this baby already. But it doesn’t lessen this pain or make me miss you any less. If anything, it makes me miss you more.

Poppy is real. Poppy has a heartbeat. As of now, Poppy is safe. I know in my heart, that you will make sure this baby is going to be fine.

I just finished up a board meeting. Long night. Lots of love, excitement and laugher in our house tonight. I am so lucky, even without you here. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

A Runaway Death in a Mental Institution with a Maybe Baby

Ronan. I know what I’ve been doing. Trying to live this life the best I can, without you. This means a ton of busy foundation work, a ton of taking care of your brothers, the way they deserve to be taken care of, a ton of busy things that keep me running throughout the day. It’s how I have to be. When I need the quiet and the stillness, it’s to the inferno I go. That’s my time to be in tune with myself and you. It’s where I feel the closest to you. I might have to be taking a break from that Inferno for a while.

I know everyone has been worried since I have not been writing. I hope they are not worrying too much. Do they wonder if I ran away? To New York City like I often dream about. Or maybe I finally cracked and checked myself in a mental institution where I sometimes think I belong. Or maybe I died like I have wished for a thousand times. Is it another maybe baby? That would have thrown me right over the edge.

Ronan do you remember how we would talk about a baby and how badly you wanted one? We would talk about baby names and how you were going to make the best big brother and as soon as you got better, we talked about how we would have another baby. Your daddy brought it up with me a lot and I always just put him off by saying, “We can talk about it when Ronan gets better.” It was only really with you, that I would talk about another baby. Things with you got worse and worse and of course the baby thing was totally off my radar because all I cared about was you getting better. I still don’t know how you didn’t, how you died, and how you are no longer here with us. All of still feels like it’s not real, at times. I still sometimes wait for you to come running through the door, but you never come. The whole baby thing was whispered about here and there, and then I had that whole maybe baby thing in my head which turned out to be just that…. a baby that I thought I was having. I was crushed when I found out it wasn’t real. I made a decision at that point to never again, put that much pressure on myself about getting pregnant or maybe being pregnant. I couldn’t have the build up again only to be let down. It mentally broke me when I thought I was not capable of being broken down anymore. I had people bring it up a lot. “Do you think you’ll try for a baby?” My response was always, “If it happens, it happens.” Non chalet. Calm. Relaxed about it. I had secretly told myself in my head that I wasn’t going to be able to get pregnant because of course, I don’t deserve to feel anything but pure torture, sadness and pain for the rest of my life.

I’m pregnant. Did I just write that? Yeah. I just wrote that, which is why I haven’t been writing to you on here at all. You know I can’t write when I can’t talk about what’s really going on. I’m not good at not being able to blab about things. It all came out of nowhere really. I was a Victoria’s Secret, getting a new bra. I’d better get measured I thought to myself. I have been a 34 C since I was 18. The girl helping me got out her little measuring tape and wrapped it around me. I told her I have always been a 34 C. She goes, “You are actually a 36 D.” What? I thought to myself. What the HELL? I do NOT want to be a 36 D! I left there with my new bra and a could it be a maybe baby floating through my head. I pushed that aside and went on with my day as it was Friday and we were having your Olivia over to hang out with us. That night I thought to myself, “Weird… my period is supposed to be in the next day or two, and I don’t feel like I’m getting it.” I whipped out a pregnancy test and peed on the stick thinking it was nothing, that sometimes my period just doesn’t come anymore due to my stress/lack of appetite/exercise regimen.  So, I peed and waited. I left the room for a few minutes. I came back and looked at my test. Two lines. What??? This can’t be. I went to show your daddy. He was skeptical. O.k. I’ll test again, tomorrow. I did. And the day after that too. I got 4 positive tests and no period. I spent the weekend sleeping, a lot and letting my mind absorb the news. I’ve been so tired, that I can hardly make it through the day, without a nap. That never happens. My body is working overtime I guess. I went to the doctor on Monday, just to confirm everything. I took a urine test there too, and I waited in the little room, for the results. The nurse practitioner came in to see me. “How have you been feeling,” she asked. I told her, “Just really, really tired.”  She then goes, “So you got a positive test result at home?” I said, “I got 4 positive test results at home.” I waited for her to say something while I had a few seconds of thinking to myself, “Uh-oh. Am I back in crazy land and this is all in my head?” She looked up at me, smiled, and goes, “That’s what we got, too.” We went over a few things like how important it is for me to rest. She told me a solid 8-10 hours a sleep a night with a nap everyday. She told me how important it is for me to be eating a lot of protein. I made another appointment to see her along with my OBGYN on September 4th for an ultrasound. I got up and walked out of the room. She said to me, “Congratulations, you’re about to add to your family!” I just looked back at her and gave her a small smile. I really just wanted to say, “Well, what about Ronan? Why can’t he be here for this, too?” I got in my car and drove off not sure where I was going.

My phone rang, like it always does, when it’s supposed to.

“Hello.” me, crying.

“What’s wrong?” said the voice on the other end.

“Nothing is wrong. I’m fine. Everything is fine.” I didn’t want to tell your Sparkly this news over the phone but that’s just what happened because I couldn’t explain my crying any other way.

“I’m pregnant. I’m pregnant and I can’t stop crying. And I don’t know why Ronan had to die and now I’m pregnant and he can’t be here to share this with us.”

“Oh my goodness, darling! This is great news! I am so happy for you, this is going to be wonderful for you. You are such a wonderful mom, you deserve to have a little sunshine in your life.” He went on and on about that’s enough with the inferno hiking, how it’s time to take care of myself, and how he I just needed to rest and listen to my body. “I know this is hard for you and I know how badly you miss Ronan. I miss him so much too. I know how worried, scared, happy, sad and confused you are. I understand all of this. You know I do. But I promise you, this baby is going to be so good for you.”

I could literally hear him smiling on the other end of the phone. I let that make me happy. It’s not often I get to make your Sparkly smile because of good news. The funny thing is, he knew I was pregnant, before I did. Last week, he looked at me and said, “Are you pregnant?” I just laughed at him and said, “No, Sparkly. I’m not pregnant. And what if I can’t get pregnant? What if I’m too old now?” He looked at me and said, “Nonsense. You are only 34. You still have plenty of time.” I said, “I hope you’re right.” And of course, he was, just like he always is. That bloody soul knows me better than I know myself.

I called a few people after I found out the news. Your Nana. Dr. JoRo. Macy. I sobbed in the phone to Macy and listened as she cried with me. She told me how she knew how I was so torn about this, but how good it was going to be. How she knows that the timing of this is just perfect because she has literally watched me come back to life. I know she was so scared for me last summer. I think everyone was. She told me how proud she is of the way I am engaging with your brothers and your daddy again. How this will be so good and healing for all of us. Her talk made me feel a little better. I’ve let this all sink in, very slowly. I have to take the time to process things in a way that I never have had to, before.

I wonder a lot about if this is part of your plan. I already wonder if this baby will look like you. It will be a part of you which means this baby will be nothing short of amazing. I will let myself feel happy and excited when the time is right. As of now, I just want to absorb all of this in a delicate way by being true to what it is, I am feeling. Right now it’s a mix of emotions, and there is a sadness/happiness combined. I am trying to be true to both of those things. I am trying to be true, to all of this, for you.

I’m tired little bug. I would give anything for you to be here, with all of us. I’m so sorry you are not. I miss you. I love you. I hope you are safe. Sweet dreams.

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