Tag: guilt

Snow Falling in Flagstaff

Ronan. Guilt is what I feel at this time, in this moment. For living this life, without you here. For the smiles that I’ve smiled, for the laugher I’ve done, for the love I’ve given to your brothers. Guilt for going on when you know, all I want to do is be with you. I wonder if the reason you insisted on being with me, almost every second of every day of the almost 4 years that I had you, is because you knew you wouldn’t be able to stay with me forever. I wonder if you miss me as much as I miss you. I wonder if you are as sad as I am because we are apart. I think that you are and it kills me that there is nothing that I can do about it. I can’t wipe your tears, hold you close and tell you that everything is going to be alright. I can’t promise you that I’ll never let anything happen to you, because it did. The worst possible thing that could have happened, did. And I will never stop being sorry for that. It is so unfair that the four of us are left here and you are gone. I constantly feel like I have forgotten you somewhere. I am constantly looking over my shoulder for you to come running around the corner. I don’t think I’ll ever stop looking for you.

I have been struggling with my sleep so much. The devil, Ambien has been in and out of my life since you were diagnosed. I try not to take it, but I’ve had a solid 3 weeks where I have taken it almost every night. Dr. Jo told me to try Valerian Root last week. She told me she takes 2 of those and she is out cold. So, I took 4 a few nights ago and nothing. I ended up taking my Ambien instead. I haven’t taken my Ambien for 3 nights in a row now. It has been horrific. The first night I fell asleep in our bed, with your daddy. I was in and out of sleep the entire night. I felt like my body was on fire. I had the most awful nightmares. I was watching myself scream your name, knowing that you were dead, but nobody could hear me or help me. Sounds like my real life. When I take Ambien, it puts me into such a heavy sleep, that I don’t dream at all. When I don’t take it, I toss and turn all night long, only to dream the most awful things. So what’s worse? I don’t know as they both seem bad. I know that I don’t want to rely on something to sleep so I am going to try to continue to tough this out. And if I need a break every once in a while, for now, it is o.k. Dr. Jo is trying to get me to meditate before bed or to try some yoga. It’s worth a shot, right??

We spent the weekend up in Flagstaff. It was another 3 day weekend and staying home just didn’t seem like an option. We tend to go stir crazy without you around. It’s like everyone is trying to overcompensate for the fact that you are not here. We headed up on Saturday and spent a couple of days enjoying the cooler weather and lazy days. Your daddy was actually able to relax. I tried too but it was hard to be up there for the first time, without you. I had a moment where I was walking into the living room and Liam was sitting down at the table on the floor. The top of his head, looked so much like the color of your hair, that I thought it was you. It was like I had the wind knocked out of me when I realized it was not. Your brothers were so kind to each other this weekend. They are such good boys. They didn’t fight at all, which seems so rare these days. I watched them as they played together, took care of each other, and helped out with a lot of the things we asked of them. We all snuggled on the couch and watched some movies, your daddy took them on an Arctic Cat ride, I took a long nap with Quinn, which I never do anymore. I snuggled up to him and let him remind me of you and the way we loved to take our naps together. Your brothers were extra sweet to me this weekend. I think they could tell I was sad about having to be without you, doing our normal family things that we loved to do. It snowed up in Flagstaff last night. I watched the snowflakes fall with tears in my eyes. You would have gone crazy over it and made me take you out in the middle of the night to play in it. I would have without hesitation.

It’s going to take a lot to heal us all. We all have some good ideas, of some things that can help. We are all being very open about our sadness and we talk about you all the time. But we are a different family now as we are all different people. Even your brothers. I keep wanting to write your little brothers. As if I feel that you were older then they are. I guess due to everything you went through and how strong you were about it all. I guess due to the fact that I now feel like you are older than them and you are the one watching out for them and protecting them. And the wisdom that you always had as you were so much wiser than your almost 4 years old of age. I always knew this about you. You truly were a gift to us all.

I have a busy week as I am leaving for New York soon. My solo trip that is much needed. I need some time to go back to our favorite city where I can just be for a little while. Some plans are falling into place which I am loving. I planned this trip without having anything to do but some very nice things are coming about. I am excited for the little adventure we are going to have together as I know you will be with me, the entire time.

Alright little man. I love you so much. I hope you are safe. I miss you so very much.

xoxo

The signs and The stranger

Ronan. I had a hard day. I was missing you extra much today; if that is even possible. We woke up late as we have been doing during these lazy, beachy days. I had a phone appointment to talk to my therapist, Sarah. I walked down the boardwalk and sat on a bench to have our session. I told her how it was easier in some aspects to be here, away from home, but hard as well because of all the memories I have of you here. As I sat and talked to her, there was a little boy about your age playing in the sand right in front of me. He kept taking the sand and throwing it everywhere. So something you would have done. I sat and watched him and cried and told Sarah how much it hurts me to see things like this. How much that deserved to be you playing in the sand and throwing it everywhere. We had a good talk. We talked about how I worry about you and how much guilt comes with having you gone. Guilt for doing silly, normal things. I told her I wonder if you are watching me and can’t believe that we are all trying to do things that make us happy. I wonder if it hurts your feelings. It hurts my feelings, Ronan. I don’t like doing all the things we are doing without you. I told her as much as I would love to believe in the picture perfect world of heaven, with you dancing with angels on clouds with harps playing in the background; that I don’t. I’m having a hard time with the not knowing part. We ended our conversation much like the way friends do. She worries about me and told me to call for anything. I will talk to her next week unless I need her sooner.

After I returned back from my talk with Sarah, your Daddy took your brothers over to the Rec Center to play basketball. I crawled back into bed and slept for a couple more hours. I cried and slept and cried and slept some more. I did not want to leave my bed today. I wanted to stay in bed with your blanket and think about you. Right when I was trying to talk myself into getting out of bed, Mr. Sparkly Eyes called. I swear it is always you who tells him to call when I need a good kick in the ass. As soon as I answered he asked what was wrong. I told him, nothing, but everything. He asked if I was o.k. and then said he knows I’m not, that I’m hurting like hell. I cried for the few minutes that I talked to him but he then made me laugh by asking me if I was crying because the ocean from surfing kicked my ass yesterday. I then make some remark that it was the other way around and I kicked the ocean’s ass. He then said, “That’s my girl.” It was something so little but it made me feel better. For about 2 minutes anyway but that’s better than nothing.

Your brothers came back from basketball and were begging to go down to the pool with Jake and Carter. I said I would of course take them so we spent the afternoon down there. I absolutely love being with all 4 of those boys, Ronan. I love to watch them play and laugh and Liam and Quinn are so happy with them. I was watching them run down the boardwalk tonight and I pictured you running behind them, trying to keep up like you always did. You were always so much older than your little 3 years as you could hold your own as well as your brothers. At one point, I looked over and Carter had his arm around Quinn as they were walking together. Such a big brother thing and it made me tear up because that is so something Quinn would have done to you. You would love being here with all of your cousins. They are the sweetest kids.

After our day at the pool and brrrrrr it was freezing, we had Kenny, Stacy, Mac and Kennedy over to grill again. We all sat outside and the kids swam and we enjoyed our time together before we were all frozen solid. The 4 boys continued to jump in and out of the pool and hot tub despite the cold air. It was a good night after a hard day. Everyone is asleep now and your Daddy goes back to Phoenix tomorrow. We are going to miss him. I’ve got to figure out how to keep your brothers entertained. They are pretty easy to please so it shouldn’t be too hard:) I am lucky to be able to take such good care of them.

So, after a hard day I can tell you a few things got me though it. One being this silent auction that is going on at The Biltmore this Friday. I cannot believe all the community support and love that has come of all of this. I am in awe, speechless, and so incredibly proud of the way my son has inspired you all. This all came together in such a short amount of time and the donations and people offering to help in any way they can brings me to tears. I want to be there so badly, but I’m not sure if I can. One of the biggest reasons is emotionally I just don’t think I am ready. Ronan passed away such a short time ago and I feel as if the most important thing I need to be doing right now is just trying to mourn him, respectfully, and to take care of my twins. There is also that whole guilt thing I am dealing with. This is a totally new emotion for me, as I’ve never really felt guilty for anything in my entire life…. and I’m having a really hard time learning what to do with it. I’d be lying if I said I wouldn’t feel guilty for being at this event when it feels like such a celebration for Ronan; which it should be and  I am so thankful for that. But, I, as his grieving mama, am just not ready to celebrate him in this way yet. Please know that I would love to meet all of you who are doing so much to support Ronan’s cause and there will come a time when I can mentally be in that place, but it is not now. Everything is too fresh and raw. I will be thinking of all of you though as you all have impacted my life in a huge way. I now hear all the time about how Ronan has made you review your way of life, but please know all the love and support coming from each and every one of you is changing me as well. You make me believe in the power of selfless love and what it means to be a part of something bigger than yourself. You all make me believe that Ronan and I can change the world into a much more beautiful place. So thank you from the bottom of my heart for making this event happen all of you little busy bees out there. I just know the sky is going to be filled with the brightest stars that night.

A couple of other things that helped me though my day came in the form of some emails that I would like to share. One, I got permission to share. Her email was so sweet and I loved what she had to say. Thank you, Alicia for this. I loved hearing how your day ended. Here goes…..

Maya, Sorry to disturb your family time but I HAD to let you know what I experienced today. After a hectic day, I had to rush to pick up my girls (6 & 4 in 2 weeks) from school, rush home to get them dressed & to a reception for the team my husband coaches during his off season. We made it to the Botanical Gardens with minutes to spare. I got the kids out of the car & they took off running. Taylor (6) ran towards the venue, Ashley (3) ran straight to & through a giant mud puddle. There was mud everywhere, all over her white dress, face, hair. I was PISSED. We’re already late. Now I have to go home & change her. All that was running through my mind is how our being late would look & what people were going to say/think. I ran over to Ash & as I reached to grab her, a HUMMINGBIRD flew between us. My hand was inches from her arm & there couldn’t have been a foot of space between our chests & all of a sudden there it was. I jumped back. It hovered there for a few seconds, flew around Ash 3 times & flew off. It honestly took my breath away. I instantly though of you & Ronan & how selfish I was being. You’d do anything to have Ronan dirty some clothes & make you late. When we released the balloons for Ronan, I promised I was going to be a better mom, wife & friend. Now, here I was worrying about stuff that doesn’t matter, about people who don’t matter. I honestly believe that hummingbird was your son reminding me of that promise. With tears streaming down my face, I picked up Ash squeezed her tight & kissed her all the way back to the car. We never made it to the reception, instead we grabbed some ice cream & walked along the bay front, muddy clothes & all. Thank you, to you & Ronan for opening my eyes!

♥
Alicia Joseph
This last email came to me tonight from a stranger but it was such a gift to me. I talked earlier about how I have been wrestling with the perfect heaven world. I swear to god, this is a sign from Ronan as my therapist, Sarah and I had a long talk about this subject today and then this email came in tonight. I cried to Sarah on the phone because I told her I’m having a hard time feeling Ronan around me. All I want is to know he is here and I’m not getting any kind of a vibe. I think right now, Ronan is trying to let me know he is here, but he is doing it through other people. Sarah had a dream about him the other night and he was smiling and waved to her. I know he is here still, I think I just have to get though this deep sadness before my mind and body will be more open to letting him in. Anyway, back to the email from the stranger that I got tonight which by the way, made me cry like a baby. Here goes….
Dear Maya:
I am just another person sucked into your blog. Yes, writing from a ridiculous unrecognizable email address.  I chose to email you privately versus posting this to your blog because I hope this message gets to you and resonates.
I lost 2 friends to cancer, sisters.  1 this past September 2010, as your baby’s fight was beginning, and her younger sister 8 years prior. Every day I ask myself how their parents go on. My friend was 38 when she passed, and her younger sister just 26. The baby and middle daughter of 3 girls.
This email is not going to ramble on about my friends but give you some brief insight on why I want to deliver this message to you. Your writing, your thought process, your profanity and your honesty reminds me so much of my dear friend and I cannot help but feel connected to you because of it.  She fought cancer for 22 years having her first diagnosis as a teenager, and bravely battling recurrence after recurrence. Her younger sister suffered for 4 years, before losing her battle.
The one thing I know my friend loathed more than anything was having others bring up comparisons of their 60 year old aunt bessie’s cancer battle, or their uncle joe’s who was 50 something, and so I do not make any comparison of their cancer, to childhood cancer, whatsoever. It would seem everyone who met her or knew her story felt compelled to discuss a friend or family members cancer fight. Enough already with it. This is your life, your reality, and your pain. There will never be any fitting comparison. Live has handed you the most cruel dreadful burden.
I am not a bible beater. This is also not a religious talk…  I get your whole dismissal of God, and though I was raised Catholic I have had so many doubts about why God would allow things like this to happen in the world.
Now that i’ve told you all of the things this email isn’t – please let me tell you what it is… I am hoping to deliver but one simple message, one which was passed onto me about “heaven” – After my friend passed away, I happened into a church where strangely enough there was a priest talking about death. Something he said, sat with me and I share it with you.
He said… heaven isn’t out there… its not up in the clouds or in some imaginary paradise. Heaven he said is a place filled with love and where you are with God. He went on to say that God is in each of us. When you lose a loved one, they are with you in the truest sense every waking hour and resting hour. I will never think of Ronan as being somewhere out there, but with you. With you Maya.
Everytime I read one of your posts about the girl from the store who said shit and caught your attention, recurring songs on your ipod, your need to run up the mountain alone to find solace, or your trip and fall on your recent run, or a flannel clad girl in the end of May who runs back and stops you in the street, I keep saying to myself… he’s there Maya, he is trying to get your attention to let you know he is right there. No one on earth has more moments of serendipity as you have since Ronan passed away.
He lives inside you, in a place where he can feel every bit of love that you could never express to him through mere words, or even actions on this earth. The place you unknowingly created for him, heaven.  Everything inside you that aches from loving him that is where he is. He is not hurting, not suffering. That priest also said that you can go so deeply into meditation that you can talk to that loved one … in the place where you truly can share your feelings, fears, unspoken words, and you will feel them communicate back with you if you get better at meditating deeply, and finding them. When you take your runs and midnight swims and you’ve beaten your body to a pulp so that your mind is sort of blank, you are getting close to that place where you can find him, at least I think you are. Its a place where you can meditate and be alone with him and ask him to talk to you. Do you think I am crazy? Perhaps.
When you worry that Ronan is out there and you cannot think he is safe or is he wandering around without you.. never never never believe that.  Ronan is trying so hard to get your attention… perhaps even through emails, postings, and blogs from random people.  Every time I read something new from you, I believe it even more. I think I have to point it out to you.
Fuck this life that you cannot kiss his sweet lips and hug him and giggle with him, or cry with him. Fuck life that you never had the chance to fight on for years even when you were prepared to. Life is wretched and miserable and I hate your families pain. FU Cancer. I am not one of these people who thinks Ronan wanted to be “with God”. When you said he wanted to be in AZ with his family. I believe that wholeheartedly. I believe that is why he is still with you. He is not about to leave. He will always be your perfect gorgeous baby boy, and I know you will always mourn and grieve his loss as long as you shall live.
For years my friend had dreams of her sister who passed away before her. The day before she died she told me that she had the most vivid dream that her sister was well, and running and laughing, and asking her to catch her and come with her. She was chasing her sister in the dream, and couldn’t catch her. Her sister told her nothing was hurting anymore.
My friend told me it was the most beautiful dream and the one she couldn’t shake because it was so real. None of her prior dreams she said had felt so real. Even the dreams that for years had her walking up with tear soaked pillows. My friend passed away the very next day. I pray those sisters are together and have no pain, and no suffering.
I am sure you are sick of cliché’s and BS. If you decide this is the biggest load of crap and you want to post it and tell others to keep this shit to themselves then I get that too.  But there is a part of me that hopes and prays you will be able to find my message makes sense to you.
When you told Ronan, to come with you and leave that place, he did it. He went with you and that is where he has stayed and where he will stay. Your soul and his will be locked together for eternity. Keep doing what you are doing. Keep writing to him, keep working towards your goal with his foundation to keep him alive, to bring hope to others, to teach everyone about undying love and devotion. You and Ronan speak to masses of people and can make a difference in this world. He has impacted more people in his short life than I could dream of in my 40 years on this earth.  I wish you so much inner peace and the ability to connect again with Ronan in a much deeper spiritual way. I hope you feel him with you, truly feel his presence. I hope he keeps giving you little signs and that you can recognize them.
-A stranger
Well dear stranger… I wish I knew who you were because your words hit me harder than anything that I have been told so far. I believe everything you just said to me and it makes absolute sense. Ronan’s heaven is with me, with his family, and even with all of you. He has left me little signs everywhere, I just didn’t know how true they were until now. The hardest part of this is not being able to physically see my baby boy anymore, not to be able to touch or hold him. I will never get over that but I have to believe his spirit is still here right next to me and someday, I will meet him on the other side. When it is my time to go. Until then, I will be sad for the rest of my life but I know that I will find a new happy as well. In the kindness of strangers, the love from my family and friends, and pushing forward to keep Ronan’s story alive so we can help other children. I want Ronan to be the voice for children with cancer everywhere. He would never give up this fight so I will do whatever it takes to support him. I couldn’t do this without all of you and I do believe the more people we have on our side, the more we are going to be able to do. So thank you again, for believing in my baby, for loving your beautiful, “perfect,” lives enough to know that Ronan deserved to have that too. And since he was robbed of it, the fact that you are all willing to continue to fight so hard for him with me says so much about the kind of people you are. I am honored to have you with us so we can continue on Ronan’s journey. I love him so much. I miss him so much. And I would give anything to have him back. Somedays, I swear I am going to just die from sadness but then I force myself to think about everything I have that is so beautiful in my life. I have to make a difference for everyone around me; not just Ronan. Liam and Quinn deserve to grow up and watch how if you live a life full of fight, passion, and love…. you can survive and do anything you want. I promise to make them proud of me too, by living our life as if Ronan is still here. By laughing about him, by talking to him, by celebrating him, by loving him forever.
Alright my sweet friends. I’m a snotty mess who needs to calm herself down. I wish tonight what I wish for every night. Blessings for all of you and sweet dreams of Ronan. He is safe… I know this now thanks to the stranger:) Tonight, I will fall asleep knowing that he is not roaming the streets of Vegas. Although, he would have made a very nice newest member of “The Wolfpack.”
G’night my sweet boy, Ronan. Tonight and every night, I’ll fall asleep with you in my heart.
xoxo

And a very special thank you to my Silent Auction Fairy Godmother. Yes, you know who you are. I’m telling you right now, that Ronan is going to watch over you everyday, for the rest of your life. Your generosity and pure love for someone you’ve never even met is unheard of in this day and age. It’s people like you that make this world such an amazing place. Thank you, my dear friend that I hope to meet someday 🙂

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.