2 a.m. Insomnia Parties With A Raccoon and A Cat

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Ronan. Everyday normal things will no longer exist in my life again. Not even a trip to the grocery store, the car wash, the bank, etc… Even the littlest things are different. I’ve been keeping myself busy enough because my life depends on it. I could easily see myself sinking into a very depressed state of mind and not getting out of bed until Poppy is born. That is why it is so important to me to have most of my days, planned out. I no longer love the luxury of not having things to do. Because if I don’t have things to do, I just won’t do anything at all and that is not a good place for me to be.

 I went to see my OBGYN a couple of days ago, just for my 4 week standard check-up. As I said before, everything with your Poppy sister looks great, but I still sat and told Dr. Schwartz about how I made the ultrasound technician check for any type of mass in Poppy’s body. She sat with me for a good half an hour to discuss how I am doing, how I am feeling, how I am dealing with all of this, and how much I miss you. I know she did not have to do this. She is one of the busiest women on the planet, but I so appreciated her taking the time to talk to me about anything and everything. She told me she would send me back to get more in depth ultrasounds whenever I wanted, she would find any excuse to send me. We have decided my next one will be at 26 weeks. She told me had you had this at birth, it would have been so microscopic that nothing would have shown up. If it would have shown up as something bigger and abnormal, they would have seen it and told me. I don’t know if this made me feel better, but I appreciated her taking the time to talk about the questions I have. She is a great doctor. After I left there, my phone rang. It was Dr. Schwartz telling me that she just got the flu shot in and she was highly recommending that I get one. I told her I wasn’t going to. She told me about the study that just came out linking pregnant women and the flu, to autism. I talked with her a bit about how I really didn’t want to get it. I would rather not put something into my body if I don’t have to. She once again, told me she couldn’t make me, but she felt very strongly about it due to how much I’m in the public and traveling. I asked Stacy and Fernanda about it. They urged me to go. I asked your Mr. Sparkly Eyes. He told me to please go and get it done. Of course I listened. I went today. Remember how I said that nothing will ever be the same again? I cannot even get a flu shot without thinking of you. I’ll never forget all the “pokies,” we had to give you after your rounds of chemo. How much you hated them. How I would hold you and your daddy would give you the shot. Shot after shot after shot. How you would scream and cry and try to be brave, but you hated it so much. My shot didn’t hurt for me today. My shot hurt for you. I’m so sorry for all you had to go through. It was so not fair or right. Any of it.
Do you know what else I’ve gotten to do the past couple of days? I went with Stacy and Fernanda to shop for your Christmas Tree that we are putting up this weekend at PCH. Of course it is a Star Wars theme. We decided this year, to do it all after your favorite guy, Captain Rex. The entire tree is going to be blue and white. Fernanda came up with the brilliant idea to find an actual mannequin and dress him up like Captain Rex to look like he is playing next to the tree. We found a kid sized one to dress up. The girls asked if I still had your Captain Rex costume. I knew where it was, but I had not touched it since you wore it on our last Halloween together. They offered to buy a new one. I told them it was o.k. We could use your little one to put on the mannequin. They both asked if I was sure. I told them I was. I can be brave. I can do this. I went and got it. I inhaled it, hoping for it to smell like you. It didn’t. I set it out for Stacy to pick up to give to Fernanda to let her work her magic. She sent me a picture of it today. It took my breath away. The little mannequin dressed up like you, looked just like you did when you actually wore the costume. I must have sat and stared at that picture for a good five minutes. I cannot believe that this is my life. That I don’t have my own Captain Rex here with me anymore to protect me. I cannot believe a mannequin is wearing my dead child’s costume. I do these things for you. Because I know you would want it to be this way. If you can’t be here with me, I will honor you by bringing your little light everywhere that I can. Including a Children’s Hospital ward where we spent so much time.
I have not been sleeping well. My internal clock has been waking me up at about 2 a.m. for months now. Last night, when I was roaming around our house, I looked outside. I saw a cat in our driveway and right behind that, a big raccoon. I don’t think I’ve ever seen a raccoon in Arizona before. I sat and watched it. I tapped on our kitchen the window. It stopped and looked my way. It was weird and creepy and I was so sad when this morning when I didn’t have you to tell my story to. I told your brothers. They thought it was pretty cool. Liam of course tried to tell me it was just another cat. Such a little skeptic he is. My 2 a.m. witching hour can be fun, Ro! Just throw a few raccoons my way. I then went on Google to do some research on if cats and raccoons are friends. Turns out, they are not. That raccoon was very likely stalking the cat to eat it. The things you learn at 2 a.m. I am a wealth of knowledge in all things raccoon now. I am also very productive at 2 a.m.  I would give anything to have you here to cuddle up to because I can’t sleep. I would give anything not to be waking up because I don’t have you here to cuddle up to. I fucking hate 2 a.m. 2 a.m. blows. I usually fall back asleep around 5 a.m. I need to find a hobby during my witching hours. Maybe I’ll start baking.
I saw your Sparky yesterday. He asked me why I looked so perplexed. I just told him I had a lot going on in my head, like always. We sat and caught up. I was having a really, really sad day but didn’t want to let him in on that. So we talked a lot about your foundation and a few other top-secret things I have in the works. I was wearing my most favorite Frye Cowboy boots that I have had for about 7 years. He made fun of them and made me laugh. I told him they were my favorite boots ever. He said he knew. I left there, feeling like my heart was going to explode from the pain of missing you. I attempted to drive home but had to pull over mid way so I could bang my head against my steering wheel and cry. I called your Sparkly up.
Me: “Do you think I’ll ever stop being so sad?”
Him: “Darling. Come on. Your boots were not that ugly.”
Not even his witty remark made me giggle. It was quiet. I just sat and cried into the phone.
Him: “I do. I honestly do. Not right now, but someday you won’t be this sad.”
Me: “I’m so sad all the time. Nothing helps. I miss him so much.”
Him: “I know you do.”
I sat and cried into the phone while he just listened.
Him: “Are you home now? Please get home. I will speak with you tomorrow.”
Me: “O.k.” I’m almost home.”
I got home to our empty house. I laid on our bed and cried for a long time. My face seems to be constantly wet these days. I wonder if my never-ending tears are because of how much I miss you, or all of my hormones due to being pregnant or a combination of everything. I used to be able to go days without crying. Now I’m crying every single day, sometimes every single hour. At least my anger seems to be under control. I don’t want to sit and punch things or hurt myself. I just want to sit and cry, so I do.
I’ve got to go now, Ro. Lots to do but all I really want to do is be busy taking care of you. I’m sorry. I miss you. I love you. I hope you are safe.
xoxo
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.

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!

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