Tag: The most beautiful boy in the world

Thank you Lulu Lemon girl

Ronan. Everyday without you is stranger and stranger. I am trying to keep super busy, but I am really just existing. Somebody asked me how I was today. I said I was existing so that was better than nothing. I’ve stopped saying I’m fine because I’m not. And I know you know I’m not and you are o.k. with that. Maybe someday I will be o.k.; but as of now , everything is a freaking nightmare. I keep thinking I forgot you at the grocery store or something. I remember feeling this way when you were alive, and if I had dropped you off at school for a few hours. I would go about running my errands and panic because I thought I had left you somewhere when you were really just at preschool. That is how little I was used to be without you. I would give anything to have just left you somewhere now; as awful as that would have been. In the grand scheme of things it would be a whole lot better than this.

Today, I took Liam and Quinn to school. Late. They have been tired lately. Staying up a little too late with us. As of now, Quinn is in my bed with me and is just now falling asleep. He is stuck to me like glue. I don’t blame him…. the poor little guy didn’t want to go to school today. I had a talk with him and told him I would talk to his teacher and if he wanted he could come home later. I think the distraction of school is good for your brothers minds right now. I know I am going to have to get them some counseling. I am meeting with someone Thursday morning to see if she will be the right fit for our family. I cannot tackle this alone. I need some help with my two little guys. As strong as we are as a family, this is all too much for your daddy and I to fully handle. An outside source will be something we will embrace for as long as we need to with your brothers. They need someone else to talk to besides us and someone who has experience in helping out with things like this.

After I dropped of your brother I ran some more “let’s keep you totally busy,” errands. I ran over to The Biltmore to return some running shorts that your daddy had gotten me for mother’s day as they were too big. As soon as I walked in, I was greeted by a bubbly blond girl. She didn’t give me the standard greeting but instead goes, “Heeeeey girl!” I just smiled and said hello. I went about my business and got the things I needed. She met me at the cash register. She asked me what I was out doing and I just quietly told her I was running errands. She then goes, “Oh, getting shit done?” OMG. Who is this girl and how can I be her friend? She totally cracked me up today when nothing is making me laugh. I thought to myself, is this really happening? Did the LuLu Lemon girl really just tell me I was getting shit done?? She did and made my day. As she handed me my receipt, I grabbed one of you F U Cancer bracelets out of my purse and gave it to her. I told her to look you up. She was totally worthy of one of your bracelets. If only more people in the world could be so candid and real. I LOVE REAL PEOPLE. So thanks, LuLu Lemon girl. You made a very sad girl, giggle on the inside the entire day today. It felt nice.

I did a really good job of keeping myself busy. I was only home alone for about 30 minutes and it wasn’t bad. My friend, Melissa dropped by and I had her drive me up to Echo Canyon so I could get in a hike. What is this weather, Ronan Baby? I know you are responsible for it because never in all the time that I have lived here, have I experienced a May quite like this. It has been so gorgeous and almost cool. I hiked as fast and hard as I could today. When I got to the last part, I was starting to get tired. The wind literally picked up and I felt like it was pushing me up the rest of the way. I know it was you. I sat at the top for a long time and enjoyed the sun. It was almost the perfect day except you aren’t here. I guess I’d better get used to those almost perfect days as I know I will have them for the rest of my life. I ran back down the hill to our house. I looked for you in our front window and so expected you to be waiting for me right at the front door like you always used to do when I would hike. You were always so anxious for me to get back to you. It was like a slap in the face today when I returned and you were not here. I slap in the face that I will never get used to and I will never accept. Because all of this is fucking unacceptable.

Tonight, we went out to Tarbell’s for Uncle Jay’s birthday dinner. We went with Jay, Charlene, Lindsey and Mark. It felt weird to be out, but all of those people are family so it was comfortable. It was important to us to celebrate your Uncle Jay as he has been such a good friend to us for so many years. It was a quiet dinner and the food was as usual, nothing but amazing. I ate a bit for you and even had some of the amazing deserts that Mark sent out for us. It was a nice night but we kind of had to hurry home due to Quinny waiting for us. We were on the clock and he called me twice to see where we were. My heartstrings tugged for him, so we ate our dinner, went back to Uncle Jay’s for about 15 minutes and sat outside. We then went home and now here we are. All snug as bugs in a rug. Tired. But restless. I am so very restless all day everyday. I’ve got to find something productive to do with all of this energy. I know you will help me figure it out. Mr. Sparkly Eyes told me he thinks I need to just take a couple of months to regroup and not do anything. I told him, I knew he was going to say that, but I don’t know if that is something I can do. I have done nothing for the past 8 months, 24 hours a day, 7 days a week, but fight for you. And now what? All is expected to be peaceful and calm? When I have  gotten so used to is going, going, going, fighting, fighting, fighting. I know he is probably right, but I don’t know if I am capable of this calmness that he wants me to embrace. I explained to him that I feel like a brand new mom, with my first born baby. Stumbling, lost, scared, worried, with a ton of adrenaline. Except now I am a brand new mom, to a dead child. How the fuck do you figure out what to do with that? Not a clue. I’m just doing the best I can which is not hiding in bed all day and taking care of my twins. As of now, that is all I can handle.

That is all for tonight my sweet baby boy and lovely peeps. Ambien induced sleep coming my way as that is the ONLY way I sleep now. Love you all to the moon and back.

xoxo

This is the tattoo I got in New York. I had “This too shall pass,” with one baby star. The other night, I had 2 more baby stars added for Liam and Quinn. So now I have all my boys with me all the time. 🙂 The stars are in purple. Club tattoo did a great job:)

24 crazy hospital nights! Somebody bust us out of here!

 

I feel like I’ve been on a roller coaster of happy and sad today. Happiness came in the form of our dear friend and Tricia’s sister, Sarah, getting a nursing job at Mayo. Soooo proud of you Sar! It also came in the form of my beautiful cousin, Shannon, getting a full ride to USD. She is about to embark on the greatest journey of her young life. Happiness came in my Ronan and his beautiful spirits and smiles. Not even being cooped up in a hospital for over 3 weeks now can keep him down. Sadness came in many forms as well. Hearing about somebody from my home town having his sister murdered last night. I don’t know them well, but my heart still aches for them. Sadness is undeniable in the hospital. I gave my biggest smile to a teenaged girl who was walking the halls with her bald head and her newly amputated leg. She told me how cute Ronan was as she passed us on her crutches. I told her she was beautiful. Sadness also came in seeing my friend, Ellen today and the look on her face after her visit to Sloan this morning. Phoebe is still in a lot of pain and is going to have to have surgery on her leg again this Thursday. I’m sick to my stomach for them. It’s nothing too major, but my heart breaks for Phoebe who just wants to be a normal girl. My heart breaks for Ellen as a mama because I know what it’s like to see your child in pain and to feel so helpless. I am praying that this surgery will help to lessen Phoebe’s pain and she can just get on living her life already. She deserves a break.

I spent the entire day playing with Ronan. He has a lot of energy and this leaves me thinking that somebody is messing with us. How can his ANC still possibly be 0?? Ronan ran circles around me the entire day and was so happy. He is not the picture of a little boy who has 0 immunity. It’s beyond frustrating. Every morning at 4 a.m. they draw his CBC’s…. his blood counts. Every morning I wait for them to come in and tell me today is the day, his ANC is rising. No such luck yet. Every time they tell me they are at 0, my heart sinks. I will just keep hoping and praying that they come up this week. I want Ronan to be out of the hospital and to spend some time with Liam and Quinn. I want my baby to be able to go outside and breathe in the fresh air. I want him to have some kind of normal….. you know how I really feel???? I want to take him home. Home seems so far away. So far away that I cannot even picture getting to go back there anytime soon. I know we are in for the long haul here and I am fully capable of handling that. But when you have been stuck in the hospital for over 3 weeks now…. it makes the homesickness kick in extra hard. I don’t tell Ronan this though. I just keep putting on my bravest face for him and telling him we are working extra hard to get him better. He asks a lot of questions, like why we have to be at a hospital in New York. He wants to know why he can’t have his old doctors back and be in Phoenix. I just tell him because this New York is a magical city that is going to get him better. He usually just smiles and says he just wants Liam and Quinn here with him. It takes everything I have keep the smile on my face for him and to keep his mind occupied so we can focus on the happy things. I may be sad and sometimes I can’t hide it from Ro. But I try my hardest to control it if I can.

Ronan fell asleep not too long ago. I don’t think he’ll stay asleep for the entire night. If I know my little guy, he’ll wake up soon and be ready to play. Last night we didn’t fall asleep until 2 a.m. He kept telling me he wasn’t’ going to sleep because it was party time and he was too busy shaking his booty. He cracks me up like no other. Every morning we are bombarded by “The Team,” of doctors. It’s one doctor and about 10 residents. It is a little weird. It makes me feel like we are zoo animals on display. Ronan gets so pissed and overwhelmed by all the people staring at him, that he usually ends up screaming and hiding under his blanket. The doctor usually goes over what the plan is for the day and asks if I have any questions or concerns. Ronan won’t let the floor doctor (the one I wanted to kick in the balls) exam him. Good instincts, kid. He has become very fond of a girl resident though. After ” The Team,” leaves, she stays behind to exam him and talk to him. He actually answers her questions. She is young, pretty, and very gentle with Ronan. Today, when she was listening to his heart I looked at her and I said, “He really likes you.” I saw her eyes tear up and she goes, “I feel the same way.” She is going to be a very good doctor someday. Ronan already knows this too. It’s the reason that he is so receptive to her as she treats him like a normal little boy.

Ronan only slept for about an hour. He woke up and we were off for our next adventure. We spent a lot of time out of our room. We walked the halls for hours, played in the playroom and avoided the hot lava that was underneath our feet. As soon as we returned back to our room, a nurse came in to tell me that they wanted us to switch rooms. Our roommate had left earlier in the day and 2 girl patients were begin admitted and they needed the girls in the same room. I hesitated as we have already moved once and it was a total pain in the ass. I had to move all our stuff by myself while Ronan waited on the floor in the hall for me. I asked if I could see the room we were moving into first. The lady told me the number and I went to check it out. Good thing I did, because there was no way in hell I was moving into that room. It was the size of a shoebox, the boy and his parents had the heat turned up to about 90 degrees. FUCK THAT SHIT. I came back to our room, which is huge by the way, and told our nurse, Alex, that I didn’t mean to be a pain…. but there is no way I could move into that room without going crazy. I pleaded with her and told her we have been here for 24 days now… could she please she what she could do so we didn’t have to switch rooms. Alex came back a few minutes later and just said they would move the boy that was in that room, into our bigger room. Thank the lord. A tiny 90 degree room is something that would have totally thrown me over the edge. So no moving for us. We are staying put where we are.

It is 1 a.m. here and Ro is just now laying down to watch a movie. We are so excited for Woody and the boys’ to arrive tomorrow night. Cannot wait to see them and wrap my arms around them all. Being here alone is fine… it’s just hard because I am stuck in a hospital and cannot leave to go anywhere. Ronan wanted pizza from a place down the street today and thankfully, they delivered. He refuses to eat the hospital food so he has been living off of peanut butter and jelly sandwiches that I make him. The hospital food is actually pretty good… for hospital food. But there is something about the smell of it that ruins the appeal. Hospital food smells makes me gag. Ronan too. No clue where he gets that from 🙂

Time to get some shut eye. Maybe. Depending on if my little man says it’s time to go to sleep. He runs the roost around here for the most part. I’m o.k. with that. The more time I get to spend with him, the better. He is more mature than most grown adults and I’m happy to follow his lead. He’s going to be a great boyfriend to some lucky girl someday. A man that knows exactly what he wants. Kind of like his Daddy:)

I love you all so very much. G’nite to all of you lovely souls out there. Miss all of you back home so much. Kiss your babies and hug them extra tight for me tonight. Thank you for checking in with us. Sweet dreams.

xoxo

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo