Tag: the beach

A little hummingbird told me……

Ronan. You should have been here today with us. I forced myself to have a better day today. Forced myself up out of bed, out into the delicious San Diego sunshine, out on to the beach; armed with my surfboard. I knew the only way I was going to get though this day today, was by getting my ass kicked in the ocean. That’s precisely what I did. I welcomed the angry ocean with open arms as I tried my best to get up on my board; only to miss the curl of the wave over and over again. To be ripped under the water where the salt water stung my eyes and I choked on the bitter taste of the sea. Happiness. Torture. Hurt. Pain. I felt it today out there and I wish I could say it quenched my thirst for what I am missing in life now. But it didn’t. Not even close. But I knew if I didn’t get out, and try to live….. well, that’s not going to be good for anyone. And as I’ve said before, this is not just about me. As much as I selfishly wish it were sometimes. There are other people involved. Other little people whom I have to take care of.

After I surfed for a while, Quinn came out to join me. I put him on my board and pushed him out past the waves. I carried him out as far as I could go and turned him around to wait for the right wave to come. He missed the first one, and toppled under the water. We tried again and this time, he got up easily and rode the wave all the way into the shore. Liam came out as well just to splash around. We played out in the ocean for a while until your daddy pointed out the dead Sting Ray on the shore. We decided to come in after that. I hope I never meet one of those guys in the ocean. They do not look like somebody I would like to be friends with.  After the beach, we went up to the pool and enjoyed the rest of the summer day.

Your daddy had to head back to AZ tonight for the rest of the week. We went out for dinner and dropped him off at the airport. We headed back to Coronado and decided to walk to the Hotel Del for ice cream. Your brothers seem happy. It’s strange to watch just the two of them interact now and how their relationship is changing. It’s as if they have to get to know each other all over again. You were such a big part of them. It’s almost as if you were such a strong force between them, as you had such a different relationships with both of them. Everything you brought into this world was unique and special and that includes the bond you had with your brothers. We all feel lost and awkward. It’s hard to sit back and watch all of this. It was hard for me to take your brothers for ice cream at The Del tonight. I know you know this. I know you can feel me because at my saddest point tonight, as the sun was setting on our way back from ice cream, I looked up and there was a little hummingbird. Flying right in front of us. Quinn and Liam both started laughing and chased it. It kept fluttering away, but only to turn right back to us again. It landed on a tree right in front of The Shores and it stood still on a branch as we came over to look at it. It stood still for a couple of minutes and Quinn kept insisting that I take a picture of it. I took one on my iphone for him. This little hummingbird didn’t move the entire time we watched it. We finally walked away, and I told the little hummingbird, “Bye Ronan.” Your brothers said, “Bye, Ro,” as well. It was a sweet moment that reminds me as lonely, lost, and scared as I feel without you; that I am never truly alone.

I spent the rest of the night playing with your brothers. I caught up on a couple of phone calls that were way overdue. This whole “hiding,” thing of mine that I like to do, is hard on my friendships. Not hard in the way that I worry about losing my friends; because the one’s that have stuck around are in it for the long haul. Forever. It’s hard in the respect that I just truly miss them and the simpleness that our friendships used to consist of. Nothing is simple anymore. I’m complex and any illusions about life being easy or fair, has been ruined for them. It must be hard to be on the other side of this and to kind of be sitting back on the sidelines; watching. Watching and waiting because you don’t want to overstep your boundaries. I am aware of my little angels surrounding me though. I know they are all still there, and giving me time to grieve. I am so thankful for that. When the time is right, I will see my friends again and all of their beautiful smiles that I miss so much. I am forever and eternally grateful and thankful for the love of my friends. I am a very lucky girl in regards to them.

We finished up our night, just the 3 of us by watching a movie together. Your daddy will not be back here all week. I’ve got to find some things to do to keep everyone entertained and happy. I’ve got to be a mom, to your brothers, like I used to be without the help of anyone else. I haven’t really done this since you were diagnosed almost a year ago. It’s going to be a challenge to say the least. The things that used to come so effortlessly to me, are now the most difficult. Being a mom. Being a wife. Just being Maya. Adios to that Maya. She no longer exists. I don’t know who I am without you. I hope to find my way back someday, but as of now, I am completely lost. At the end of the day, I am just happy that I am one day closer to being reunited with you. I miss you so much.

That’s all tonight my baby doll. I’ve given up on this trying to sleep without the help of my Ambien experiment as well. The pain of having to survive the nights of not sleeping, but instead lying in bed and feeling as if every part of me is burning with pain is not something I am capable of handling. Bring on the Ambien.

I love you. To the moon and back forever and ever. Sweet dreams, my love. I hope you are safe.

xoxo

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo