Little seal

 

Ronan. Your birthday. Daddy’s birthday. Liam and Quinn’s Birthday. Next up…. Father’s Day. Tomorrow. It’s hard enough having you gone, but having these “celebrations,” without you is unbearable. Tomorrow, I will somehow manage to get myself out of bed, somehow manage to go on about the day, somehow I will let your daddy know how much you love him. I will love him for you tomorrow. I can’t believe he has to be without you, so soon on fucking Father’s Day. No.No.No.No.No. This still can’t be true. I’ve managed to get through these days without you, but I do not want tomorrow to come. I wish we could all sleep right through it and wake up on Monday. Can’t we just skip over Father’s Day tomorrow?? I’m tired of these celebrations so soon after having you gone. Talk about ripping a band-aid off of an open wound. It’s all happening way too soon. I’m so sorry for your daddy. I’m so sorry that you can’t be with us tomorrow. I would give anything to change this, Ro. I know you know that.

We spent today at the pool and the beach with Laura, Kasey, Cameron, and Baby Chase. It was a gorgeous day out. I went surfing for a couple of hours. The Coronado beach was full of seaweed today. I was literally paddling my board out to get past the waves and my hands were full of seaweed after each stroke that I took. I didn’t mind though; it was so gross and unlike anything I have ever experienced before that it made me laugh. The waves were small today but it was good for me as I am still learning how to get the hang of this whole surfing thing. I stood up a lot which also made me smile. After I had been out for about an hour, I came back in to warm up. As I was laying on my towel, I heard some guys in the group of people next to me talking about how they were out boogie boarding and a little seal was out there with them. I, of course, thought of you. I wished I had seen this little seal today but just hearing them talk about it made me smile and cry all at the same time. You are my little seal. Your name always fit you so perfectly and you always reminded me of one with your playful ways. Even more so after you got cancer with your beautifully bald head and enormous seal eyes. Was that you today, watching over me without me even knowing you were so close by? I think it was. Thanks for keeping me safe. Next time, I’ll look for you.

After our beachy day, Laura and I ran some errands and your daddy and Kasey got the food ready to grill down by the pool. They cooked up a feast and we spent the evening eating and watching the kids run around and play. Liam and Quinn are so good with the little one’s. They were both so meant to be big brothers. I am so sad that they don’t have that anymore. They were always so good to you and loved you so much. My heart breaks for them almost more than it does mine. Watching them these past few days with Cameron and Chase has been beautiful and sad. They were meant to be big brothers in life. They were meant to be your big brothers. I’ll never understand this, Ro. Never. I’ll never understand why you had to be taken away from us. Such a cruel, cruel reality.

How am I going to get through tomorrow? How am I going to be strong enough to get your daddy through it? I’m about ready to start banning all holidays from now on except Halloween, which was your favorite. If I had my way from now on we’d only celebrate Halloween, and Birthdays. Everything else seems stupid and pointless. But so does everything without you. I’m sorry I’m being such a Debbie Downer tonight. My heart hurts and I don’t know what to do or how this is ever going to get better. I just miss you so very much. I’m going to go now, Ro. I’m too sad to write anymore tonight. I love you to the moon and back baby. Sweet dreams.

xoxo

Chase and Quinn. Look how happy Quinn looks. He loved being your big brother so much, Ro.

You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

The hands that refuse to let go

 

 

After a Friday evening meltdown, a sea of tears from both my husband and myself, we somehow managed to pull it together and put on our happy faces for the weekend. Time to pick ourselves back up off the bathroom floor and together; we did. We spent Saturday doing things around the house with boys. Lot of quality time just enjoying being together. Later in the evening Woody ran the boys’ over to his parents house for a sleepover. The twins stayed the night, but Ronan just wanted to come home so of course, he let him. Woody and I had planned on having a date night, but it didn’t quite work out that way. I had plans for an early dinner to celebrate one of my best friends, Marisa’s birthday, but was planning on spending some time with Woody after. I met Trish, Marisa, and Danielle, at True Foods for a dinner out. I tried my best not to be a Debbie Downer, but there is not pretending around those 3. There is no need to pretend either which is why I love them so much. I sat outside alone before the girls arrived waiting for our table. All I could think to myself, was, look at all these shiny happy people…. everywhere. I wanted so badly to be one of them but could barely muster up the energy to come out of the zombie state I was in. Once Marisa arrived, we sat at the bar and both had an amazing Margarita together and caught up on some things. It felt so good to be with my little M. I miss her so much. Trish and Danielle arrived soon after and we sat down for dinner. It ended up being such a wonderful evening. We talked about everything. Somehow, those girls managed to take my sadness and wash it away for a couple of hours. I was so happy to be with them and celebrate another birthday with Marisa. We talked about how we will all be together when we are 60 doing the same thing and how life will have all worked out beautifully. I can’t wait to look back on everything we are going through and have survived it. All with the help of my beautiful friends. Luckiest girl ever.

When I returned home, Ronan was still awake but he was tired and ready for bed. I kissed Woody goodnight and crawled into be with my little bug. Although I was beyond exhausted, I tossed and turned the entire night. It was an awful nights sleep once again. Ronan woke up bright and early, so I got up with him and we let Woody sleep in. Our Sunday was spent spring cleaning. Or, in our case I’ll call it, “You’re moving to New York in 5 days so you’d better get your shit together.” Woody cleaned and organized the garage, I tackled the boys’ closets, drawers, toys, my closet, and everything else that needed to be done around here. I cannot go to New York without a clear head and having everything organized to a tee is the a good start to that. Ronan happily played around the house all day and waited for Liam and Quinn to come home. Woody and I were able to get a ton done which feels really nice even though my anxiety is though the roof. I went for  a fast 4 mile run this evening to try to burn off some of my nervous energy. Oh, and Trish, if you are reading this, totally forget to text you that I made it home safely and did not get eaten by a coyote on my dark run:) My run felt nice but didn’t do much for my nervous energy. I came home to a house of happy boys’ playing sweetly. I finished up all of the laundry and the rest of the little things that were left to do. Ronan is now curled up beside me and sound asleep. Woody and Quinny are playing video games and Liam is asleep in his bed. All is peaceful here. I love nights like this.

Liam and Quinn have Spring Break this week. Normally we would be going somewhere totally fun for vacation. Not this year. Makes me so very sad. We will spend the week at home and I will do my best to entertain and soak up my time with them as much as possible. Ronan has his clinic visit tomorrow and it will be his last one before we leave for New York. He told me tonight he is sad to leave everyone to go to New York and wants to know why Liam and Quinn can’t come. I hate that we have to leave them behind. I don’t know how I am going to do this when Thursday rolls around. It is going to be beyond hard to say goodbye to them for such a long period of time. We will have to set up our nightly Skype chats. Everybody seems to enjoy that.

So much to do this week. I am trying my best to be excited for New York because I know once we get there it is going to be great, just like our last long stay there in December. I didn’t even want to come back here at that time. It’s hard; my heart is torn because it feels like it belongs in both places. UGH. Don’t even get me started on leaving Tricia. That is going to be beyond brutal. I’m still trying to convince her to move to New York with me…. best idea ever:)

Goodnight dear friends. Hope you all had a beautiful weekend.

xoxo

Hellllloooo Phoenix

Home. Safe and sound. Tonight, my life flashed before my eyes as I pictured not having Ronan on a private jet to get him home. I seriously was almost sick to my stomach and I looked over at Trish and said, “Could you imagine if we would have had to fly home on a commercial flight??” She said no way. If that would have been the case, I don’t think I would have taken Ronan back to Phoenix. I think I may have possibly said screw the study. I know I was not going to say thank you anymore but I’m sorry, SB. You have no idea how much stress you saved me. Thank you again, and again, and again. A commercial flight would have been HELL. He is so miserable right now and was so miserable on the flight. Thankfully, he was able to stretch out and actually lay down on a big seat and rest. He was cranky, hurting, and not a happy camper at all. You should have seen the way he lit up as soon as we touched down in Phoenix and he watched as his two brothers ran and got on the plane to hug him. Oh, it was so sweet it brought tears to my eyes. We loaded everybody into the car and headed toward PCH. As soon as we approached, Ronan asked where we were going, and we had to tell him to the hospital. I watched as his little lip quivered and he said he just wanted to go home. Once again, I was almost sick to my stomach. He was so sad but was too tired to put up much of a fight. Right as we pulled up to PCH, our two favorite nurses, Danny and Arica came walking out. I could not have been happier to see them. Arica gave me a big hug and they were so happy to see Ro. They are both working tomorrow so I know that will make Ronan happy. Liam and Quinn cannot even come into the hospital due to it being RSV season. How is he going to survive without seeing his brothers for the next 10 days? We are going to have to get Skype set up pronto. Ronan is now passed out with his antibiotics running. My poor little guy. He has been through so much and is so strong and brave. I am so sad that he has to go through all of this. It breaks my heart on a daily basis; especially when I see him not acting like himself, like he is depressed and sad. I miss his laugh and smile so much. It’s been a few days since I’ve seen it. Maybe it will appear tomorrow on my un-birthday. That is the only thing I want for my day tomorrow, is to see Ronan smile.

So tomorrow is my 1.11.2011 birthday. It’s supposed to be extra special, right? No thanks. I told Woody tonight that tomorrow is officially my un-birthday. I have actually been being a little bratty about it to anyone that brings it up. I was talking to my friend Pam tonight and she goes, “So happy birthday tomorrow…like it fucking matters.” I said, “THANK YOU! Finally, someone who gets it!!!” She told me she absolutely gets it and I have the right to have an un-birthday. My wish for my birthday tomorrow is for all of you just to think about Ronan, and all of the other kids who are suffering. Take my day and pay it forward to someone else… buy the stranger behind you a coffee at Starbucks, make someone smile, and then think of Ronan when you accomplish this. Take my day and hug your kids extra tight and be grateful for everything you have. I have everything I could ever wish for in my life, except for Ronan’s health. The thought of “celebrating” my birthday seems so unimportant and silly. So no birthday for me tomorrow. Just another day, with my beautiful son, is all I could ever want or need.

So, back from New York and I’m still having mixed feelings. I’ve been pretty upset about having to return so quickly when Ronan is so not feeling well, but I know it’s not going to do me any good so I’m trying my best to change my attitude. This is just not the way I pictured coming back here at all. I wanted to come back from such a positive trip and transition Ronan back to Phoenix in a positive way. By taking him straight off of the airplane, fully healed from surgery, and back to his house and to his brothers. Not straight from an airplane right to PCH for another 10 days. But here we are, and we will make the best of it that we can because that’s just how we roll around here;). I will get Ronan through this and soon we will be home for awhile, before transplant and it will be oh so sweet.

G’nite to all of you out there. Sweetest dreams.

xoxo