Month: May 2011

I live my life for you

Ronan. Ouch. Ouch doesn’t come in the form of you hurting from your broviac dressing changes we used to do every week. Ouch doesn’t come in the form of the pokey shots we used to have to give you after you finished your round of chemo. Ouch now comes in the form of living this life. This life without you. It comes in seeing all of the little kids who are your age running around the beach. It comes in the form of seeing the beach towel today that had your Paul Frank monkeys all over it. It comes in the form of my obsession with taking pictures and you are now missing in every one of them. You are just gone. I’m waiting for you to appear in a picture of your brothers, right in the middle where you used to always be. It is beyond weird not having you around to take pictures of, Ronan. You were such my little ham and I used to absolutely die over talking pictures of you and your big blue eyes. I miss you so much it hurts. The pain is not getting any better. I still think it is getting worse as the days go on and I watch everyone else in life with their beautiful kids. I sit and wonder to myself, do they know how lucky they are? How lucky they are to be able to just hold the hand of their little ones to cross the street? How lucky they are to deal with a tantrum or go through the terrible twos? Those people I watch from my new set of eyes are so unbelievably lucky. I find myself sitting back a lot now and just absorbing my surroundings and wishing for you. I want to scoop up every little person I see and tell them I love them, because I do. They all remind me of you in different ways. The little boy with the blue eyes, the little girl with the mischievous smile, the laughter and innocence that these little people are so blessed to have and they don’t even know it. And they shouldn’t know it; but their parents should. I hope so much that all these people who are touched by your little life now take the time to be grateful for having something so simple and beautiful. I hope they kiss and love their kids so much more now. That is my wish for you, Ronan. After you passed away, I sat and kissed your little cold lips about a dozen times. I wanted to sit in that room with you and kiss you forever. Instead, I now get to sit and cry about how I will never be able to kiss your little lips again. You had the best lips too. They were so full and soft. Your daddy and I were talking about you the other day and how unbelievably perfect you were. I keep thinking you were too perfect for this world? Your beauty was unlike anything that I have ever seen before. I don’t understand why you had to be taken away from us. I will never understand this which is why something has to be done, Ro. After this summer is over, I’m going to figure out a plan. I have got to help other kids like you who deserve to survive this disease. I will do it for you and in your honor. I know this will not bring you back, but I know it is something that would make you proud and smile. I miss your smile so much.

Yesterday, I laid in bed for a long time and held your blanket and cried. I cry about you all of the time now because I am constantly feeling the emptiness of life without you. No more shock, no more numbness. Your brothers have been taking really good care of me though. Quinn likes to lay with me when I am sad and we talk about you. He falls asleep holding my hand much like you used to always do. You have the most amazing brothers, Ronan. I thank god for them everyday of my life. I don’t know what I would do without them. We are slowly finding our way back together. They have had such a great time being little beach bums with their cousins, Jake and Carter. It is so therapeutic to watch them grow close to their cousins. It gives me a lot of peace of mind. One of the most beautiful things to come out of this has been seeing all the new bonds and relationships that have been formed. I said this the other day to someone….. that one of the things I treasure most is how I’ve watched my beautiful girlfriends all come together and the new friendships that have come from this. The bond that they have all created is such a gift to me. They have all given me such a gift by helping me through this that I hope this gift is something that I have given to them. It’s been like watching a puzzle slowly come together and I know the friendships that have been formed will be friendships for life. We are all like sisters now. I watched the way they all came together for our family and for you. They fought and continue to fight for us. I never knew what a powerful thing love could truly be, baby. It was only when you got sick that my eyes were opened up to a whole new world. It is a beautiful world indeed, but I so wish I was learning this lesson through something else rather than losing you. I don’t know how we are going to heal without you, Ronan. I think our new life is going to have to drastically change. It’s going to have to have a much bigger purpose, a much bigger meaning than living in the little bubble that we lived in before all of this. We are working on the healing part of this a now. Baby steps. The ocean. Family time. New adventures. Simpleness. I can’t tell you how exactly we are doing this, but the fact that we all get up everyday and somehow manage to smile is a good enough start for me. It is all we can do right now, Ronan.

Today, Quinn and I were taking our usual walk to Starbucks. I had on my sunglasses, fedora hat…. my usual, “hello I just woke up look on and I’m going into town.” We were walking on the boardwalk and this girl and her boyfriend passed us. I only noticed her because she had some flannel shirt on and I thought how cozy and cute it looked. A minute later, I heard someone running up behind me and she goes, “Maya!” I turned around and it was the girl in the cute flannel shirt. She then told me how she reads my blog. I was shocked  she recognized me and I asked her name and introduced her to Quinn. She introduced me to her boyfriend and I asked where she was from; she said Arizona. It was so random and so sweet. So to Allie today, thanks for having the guts to run up to me and say Hi. It was really nice to meet you:) Enjoy the rest of your time here, although I think you are leaving to go back to AZ soon. I hope you had a nice trip here.

After we returned back to our place, we met up with Stacy who is here for the week with her kiddos and Kenny. So fun to have them here with us. We split up since I had a surfing date with Katie and Sarah. We took lessons today and I’ll have to say it could become my new obsession. For the first time in 9 months, I had to fully forget about everything in my life and focus on fighting to get up on that board, stay up, and concentrate like I have not had to concentrate on just myself in a very long time. We stayed out in the ocean for about 3 and a half hours today. It was just what I needed and I loved every second of it. I’ve always wanted to surf. So stupid that I’ve waited so long to try something that I’ve always wanted to do. There were always too many excuses before. Well, not anymore. I’m done making excuses, Ronan. I’m going to live a life full of passion and adventure and I’m going to do it not only for myself, but for you too. Life is too short to let things hold us back. All fear is out the window. I’m done being scared. You were never scared of a thing in your life. You have left me this gift and I will keep living this way for you. I owe you so much for teaching me so many lessons. You are my hero, Ronan. You are my everything.

That is all for this evening little man. I love you to the moon and back. I will keep you in my heart forever. Sweet dreams, my love.

xoxo

I need you, I want you, I miss you

 

 

 

Ronan. I made it though another day without you. I’m not sure how. It was an o.k. day. A quiet day. I hate the quiet. It’s eerie, it’s sad, and it’s not how our life is supposed to be. Quinn and I walked to Starbucks this morning and held hands. We talked about you. We stopped and I bought him a boogie board at one of the surf shops. It’s orange, his favorite color. He is so excited about it. He told me thank you about ten times. That made me smile. After we returned from our little morning out, your daddy took Liam and Quinn over to the Rec Center to play basketball. I killed a couple of hours by cleaning and doing laundry. I wrote a letter and talked to Fernanda for a bit. It was a new normal, weird, and boring day. The kind of days that I will never get used to and never embrace. I liked all the non stop chaos that came with you. You made everyday so fun and different. I never knew what to expect, but I was always up for the challenge. Your daddy woke up this morning to Liam crying. He said he was crying because he really misses you. He needs to mourn you and all we can do is be here to help him. To tell him how his feelings are normal and he should be crying over the fact that you are gone. But he also needs to know that we are still here and we will never forget you. You will always be a part of our family, sweet baby boy.

I’m not sure where the rest of the day went. We all hung out together, I made lunch for  everyone. It was a cloudy day here so we pretty much just stayed inside. We went down to have a BBQ with your family and friends who are here. I sat on the beach with Jennifer and Katie for a while. We talked about you and your last days here. I talked without crying and somehow managed to make your story beautiful for as painful as it is. Even in your death, your beauty just shines thorough. You are so amazing. We all sat and had dinner outside by the pool. I couldn’t eat tonight. The no appetite thing seems to come and go. After dinner, we went back to our place. Your brothers had Jake and Carter come over to play a little PS3 NBA game. I snuck out for my nightly run. I ran on the beach and in the middle of my run I tripped on something and flew in the air. I had sand all in my mouth, in my hair, eyes…. everywhere. I just got up and laughed it off. Don’t worry, it’s just the world trying to knock me down again. I brushed it off, thought of you and continued my run. It was a fast run as I only put in about 5 miles but every part of my body hurt. It felt good. After I finished, I stripped down and jumped in the ocean for you again. My nightly swim is becoming a ritual. Those 7 years of swimming lessons sure have paid off. Thanks, Dad. Tonight, as I was swimming in the ocean, I cared about nothing. And I have so much to care about but tonight for the 20 minutes that I was in the water, nothing mattered. You are gone and with that comes a reality that I am not ready to face or accept.

So today, was a hard day for me. Everything reminds me of you. While I was with Quinn, we stopped at a candy store. They had toy pistols hanging on the wall. I started to cry over wanting to buy one for you, because I know how much you loved your toy guns. I almost bought it just to keep it with me in hopes that you will return. But I didn’t. Because I cannot live unrealistically forever, Ronan. I have to accept the fact that I will never be able to buy you a toy gun again. I will never get to watch you run around and shoot the bad guys like we spent so many hours doing together. You always made me be the bad guy. Sometimes, you let me be your partner. I liked that best. Being your partner in crime will always be one of my greatest accomplishments in life.

I’m tired tonight, Ro. Tired of life, tired of missing you so badly, tired of all this sadness. I will try to sleep tonight and wait for you to come and visit me. I need more than anything to see your little face. I love you. I miss you. I hope you are somewhere safe and happy. G’nite my beautiful boy. Sweet dreams.

xoxo

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

Ronan big jet plane

Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo

Thank you, Heidi

Rockstar Ronan

On May 9th my cousin Woody and Maya lost their baby to a horrible cancer.

Neuroblastoma will not ROCK others!!

In an amazing community effort to raise money and awareness we are

Asking for your help.

All purchases you make with Stella & Dot during May 26-May 30th

will go DIRECTLY to the

The Ronan Thompson Foundation

Give yourself a gift(s) and let it be reminder of a family who lost a loved one

May I suggest a Rockin Purple leather bracelet…

Visit my website:

www.stelladot.com/sites/heidiash

Select Ronan Thompson as the hostess

Shop, pay and receive your gift in memory of Rockstar Ronan!

Thank You,

Heidi 602-320-1228