Tag: Mr. Sparky Eyes

2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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That beautiful day your sister was born

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Ronan. I know I’m supposed to sleep when your Poppy sister sleeps, but even early in these morning hours, I just can’t seem to do so. It doesn’t matter the lack of sleep I’m getting due to breast-feeding her, holding her, or obsessively watching her sleep because I’m scared she’s just going to up and stop breathing. I think at this point I’m just running off adrenalin and that’s o.k. Sleep stopped being my friend a long time ago.

So, do you want to hear the story about the day your sister was born? I know you already know it, but I’ll recap it for those who don’t. The last few weeks of my pregnancy I was miserable. Miserable in a way that I found myself begging day after day for your sister to finally get here. You know I’m not a good pregnant person at all and those last few weeks, I was beyond done both mentally and physically. Dr. Schwartz was well aware of this too which is why I got her to agree to strip my membranes to try to jump start my labor the same way she did with me for you. I went into her office on a Tuesday and she did this for me to try to get things rolling. It didn’t work. I went back to her on Thursday and once again she stripped away and I left her office hoping that your baby sister would make her entrance into the world soon; just like the way you did after I had this done. I ended up going to the hospital due to having some bleeding and pretty bad contractions had started up as well. I thought it was going to be go time, but as the night went on, the contractions stopped. I had to stay the night at the hospital so they could monitor me, but I was released the very next day. As you can imagine, I was out of my mind upset. I may be a patient person about most things in life, but the end of a pregnancy is not one of them. I also had myself convinced that Poppy was for sure going to be born dead or was never going to come out at all because clearly I had made her up in my deranged head. Once home I pretty much stayed in bed the entire weekend, not wanting to talk to or see anyone. If there was ever a time that I was “depressed,” in my life, you could say the last few week of pregnancy were it for me.

On Sunday night around 10 p.m. just as your daddy came to bed to go to sleep, I was huffing and puffing about how miserable I was and how I hated the world so I got up to do my late night laundry that I have become accustomed to. Just as I was cursing the pregnancy gods from above, I noticed a little drip, drip, drip running down my legs. I walked down the hallway and the puddle continued to slowly trickle out of me. I went in to our bedroom and said to your daddy, “I think my water just broke.” He jumped out of bed all panicked and told me to grab my stuff so we could rush to the hospital. I told him, “No way. I have to shower first. This could take forever and I’m not bringing Poppy into this world until I shower and shave my legs.” I calmly got showered, dressed, and off to the hospital we went. We were admitted right away and Dr. Schwartz was called. She ordered the hospital to start pitocin for me to get things to progress and little faster as I was still only about 4 cm dilated. By this time it was about midnight and I geared up for the night while your daddy quietly slept away on the couch. My contractions started to get pretty bad and the epidural could not have come soon enough. I could not get a hold of Dr. JoRo who was back up in Sedona as she had been with me in the hospital all of Thursday night but went home after I was released. My doula, your daddy, was just not cutting it as I screamed at him about the pain/having to feed myself ice chips because he was so tired that he could not stay up. Luckily, I had a really great nurse who helped me through everything while your daddy got his beauty sleep to prepare for the big day. Apparently labor is hard work when you are a dude 😉 I was really proud of the self control I contained as it took everything I had not to throw ice chips at your Daddy’s head while he slept away and I sat there cursing away from the pain of the contractions that were getting stronger and closer together.

It was around 5:15 a.m. that I started to push your sister out. I had your blanket on my chest and did my best to remain calm as I said your name over and over in my head. 3 pushes was all it took and your baby sister was plopped in my arms immediately. I was overcome with so many emotions that is was almost as if I couldn’t feel a thing. I just remember staring at her and whispering, “Thank you, Ronan,” in her little ear. She looked up at me with her big wide eyes that I can tell are already full of so much wisdom. Your sister was born at 5:35 a.m., 6 lbs 11 oz, tons of dark hair and oh so perfect in every way. She had one little cry as she entered this world but that is pretty much the only peep she has made. I’ve never seen a more calm or peaceful baby in my life. I spent the next few hours staring at her and in disbelief of how much she looks like you. Your daddy and I cannot get over it. I think I went 48 hours without any sleep at all. My adrenaline was through the roof all I could seem to do was stare at your little sister as I slowly let myself fall in love with her. I needed some time to process everything and needed some time to bond with this new baby girl as you know how bittersweet this is for all of us.

Dr. JoRo arrived at the hospital around 10 a.m. and stayed for much of the day. She left once your brothers arrived to let us have some private time together as a family. It hurt to see your brothers walk through that door without you but it was also such a beautiful moment, too. They were so excited and proud to meet their new baby sister. I think they were also both relieved to see that she was finally here, safe and sound. We kept visitors to a minimum just the way I said we would. I needed everything to be calm and quiet not only for me, but for Poppy as well. As the day went on, I sat and watched out our window as an unexpected rain storm took over the entire valley. It was one that was not predicted but rather it came out of nowhere. I know you are always with me, Ro but this storm on the day your Poppy sister was born just proves it to me even more. It was such an amazing thing to witness like it was our own little secret. You are such a little spicy monkey boy and I spent much of the day smiling as I watched the rain pour down out of nowhere.

Our Mr. Sparkly Eyes came by both days that I was at the hospital. The first day he just popped in to take a peek at his new goddaughter and the second day he came for a little longer to sit with me and check in with me to see how I was doing/handling all of this. He told me how I was such a natural at being a mom. I smiled and told him I knew, that this was the easy part for me. I told him how proud you would be to have him as the godfather of your baby sister and how I knew that you would have picked him and only him for this as he is the only one special enough to do so. He will be the best at watching over your baby sister for me just like the way he helped to watch over you whenever he could do so. I know you would be so happy about this. I am so honored to have him play this role in your sister’s life. It makes all of this that much more special.

We were released from the hospital 24 hours later and it took us this long to decide on your sister’s name. We had originally planned on naming her Ireland Ronan, which I am still so in love with but for some reason, it just didn’t feel right anymore. Your daddy and I went back and fourth about her name, forever. I just could not part with Poppy. I didn’t want it to be a nickname or an afterthought. It had come to mean too much to me to just let it go. Your daddy threw in a few curveballs and suggested some names like Sophia and Alexandria, both of which I love, but this baby has been Poppy since she was 5 weeks in the womb. Nothing else felt right. Your daddy and I sealed the deal with Poppy Ronan with a kiss on the lips and a smile in our hearts. I know her name would be Ronan approved. I think you would have loved it so very much. It makes me smile and it makes me happy. Poppy Ronan Thompson sounds like the sweetest thing ever and it just seems to fit her little face.

We have been home now and are all doing just fine. I didn’t spiral into that postpartum depression like everybody was freaking out about and worrying that I would. I have been a little quiet and have not seen too many people but that is not due to depression. It’s just due to the four of us trying to enjoy our quiet time with your sister and soak this all in. I’ve been staying at home with her and just trying to let myself bond with her the way that I need to. I wondered how this was all going to feel… having a new little life around to take care of. I wondered if that hole in my heart would disappear due to your Poppy sister being born. I have come to find out this is not the case and will never be the case. I feel like my heart has grown and gotten bigger, but the hole there will always remain. Nobody can fill it as it’s not meant to be filled. It is there to remind me every single day of how much I love you, how much I will always love you, and how much this will forever hurt as your absence in this world is the most painful thing that I have ever felt. This hole in my heart will remain there for the rest of my life. The birth of your sister has proven this. If she can’t fix this, it was not meant to be fixed no matter how much love I feel in this life without you here. I will live with this hole in my heart for the rest of my life and I can be o.k. with this. I am learning to be o.k. living like this. It makes me stronger and makes me work harder at everything I do. I will let my pain do great things in this life to make you proud.

Alright my little man. I am going to go. Thank you from the bottom of my heart for your beautiful sister. Thank you for getting her here safe and sound. I promise to be the best mama in the world to her and teach her all about you. I can’t wait to learn from her the things I know you have already taught her. You are the best big brother in the world. We all love and miss you so much. I’m so sorry that you are not here with us. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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A Rock and Ro Marathon and The Day Dr. Sholler Almost Died

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Ronan. This was another whirlwind of a weekend. So much so that my body/mind hit a wall today and I almost passed out at the dentist’s office where I had to take Quinn to get his first filling. I have never been through a pregnancy where I have been this busy. I have never felt the level of exhaustion that I am feeling. We made it through Quinn’s dentist appointment and I got us home and went straight to bed for the rest of the day. As much as I didn’t want to do this… I also do not want to go into labor anytime soon so I made myself listen to my body and your Poppy sister. My body is acting like it is pissed off at me and screaming at me to slow down. Ugh. I do not do well with slowing down.

I spent the weekend gearing up for all things marathon. Dr. Sholler was in town so much of the weekend was spent with her which you know I loved. I had the chance to introduce her to Dr. Jo. One of the highlights of my life! Getting to spend time with the two of them, together was really amazing. They both deserve the noble peace prize as they are two woman who are doing extraordinary things in the world. We had a nice dinner at Chelsea’s Kitchen, your favorite restaurant. You had the best taste for a 3-year-old. I miss taking you there, so much. After our dinner we had to run over to California Pizza Kitchen as they hosted our “Carb Load,” night before the race. So awesome of them to do. I had the chance to meet many of the people who came in from out-of-town to run for you. It was so amazing to hear where everyone was from. I met people from all over and could not get over how many out-of-town runners we had. You are inspiring so many people, Ronan and it really is amazing to see.

The next morning, I got up super early to head down to the race. We had a booth set up at the end of the race and I wanted to be there to tell our runners thank you despite how tired I felt. I am so glad I went and spent the day and was able to meet some of your RoLovies who ran for you. I had a family who decided to skip their trip to Disneyland this year so the dad could come and run the full marathon for you, Ronan. Can you believe that?! They had 3 kids, and they skipped Disneyland this year because running for you meant so much to them. I don’t even have words for that, only tears. I had one girl who ran with your pictures on her back. Oh.My.God. I really tried my hardest not to cry about this, but it was no use. I was bawling. She was bawling. Becca was bawling. Stacy was bawling. Melissa, too. Our rad junior board, was also in a hot mess of tears. (Hi! Yes, we have a junior board now. It’s not official or anything yet, but they are LEGIT. Thank you girls for all your help) Dr. Trent from TGen ran for you, Ronan. I adore that man. I was so excited for him to be doing something so wonderful for you. Dr. Sholler had a great time running for you. I know I say this over and over and over, but I cannot even explain how amazing she is. I wish so much that she would have known you. I’m trying not to play that little game in my head that I often do called, “Ronan would still be here if…” If Dr. Sholler had taken care of you. I don’t know if this is true. I hate the fact that I will never know. What I can do is work with her, support her, tell everyone I know about her, so that I can help her do the only thing she wants to do which is save kids lives who are here now. As Dr. Trent put it on the night we all had dinner together, “Many people talk the talk, but do not walk the walk. Giselle walks the walk like I’ve never seen anyone before. And she gets beaten up for it sometimes. She is a pioneer.” She is indeed a badass pioneer who will change the face of this ugly disease. And she will do it in a way where you know she is not just another mad scientist playing God. She truly cares about the patients she is taking care of, as much as her work if not more.

We might be the first foundation to have almost killed our dream doctor, by the way. I was not a part of this, but between my two board members, Stacy, Melissa, and Dr. Sholler, they had quite a story for me. After the race, Dr. Sholler needed to get back to her hotel. I could not take her as I didn’t have a car and was still needing to stay at the event to tell some people thank you. I put the precious life of Dr. Sholler in the hands of my two very responsible friends and board members. The walk back to the car was long and one of those rickshaw bicycle guys was peddling around. The 3 of them decided to hop in so they wouldn’t have to walk so far to the car. Rickshaw bike ride gone bad! From the story I got a traffic light turned red in a major intersection and the bike guy decided not to stop, but to speed up! I know all 3 of them saw their lives flash in front of their eyes and Dr. Sholler was almost thrown from the bike. I about died when I heard this story. I cannot imagine if something would have actually happened. Stacy has decided we need a reality camera to follow us around at all times due to stuff like this always happening. It is so true. Even at our most serious times, funny things seem to always be surrounding us. I tell myself a lot that it is your way of reminding us not to forget to laugh once in a while even though what we are doing is for a very sad reason. You know we need a lot of laughter to help us through this, otherwise it would be a constant stream of tears. I am very thankful that we can look back and laugh at the little Rickshaw bike ride and nobody ended up being roadkill. Geez. Thank you, Ro!

I had a dream about you the other night. You were sick but instead of cancer, you had some gashing wound on your head. I didn’t care. I was just walking about the hospital, talking to your Mr. Sparkly Eyes all calmly like nothing was the matter. I, of course knew you were dying, but I was just thankful to have you in my arms. As soon as I woke up from that one, I fell back asleep and dreamed of your Poppy sister. Your Sparkly was in this one too. It seems to be a pattern whenever my dreams involve you, he is always there. In my Poppy dream, she was about 3 or 4 and looked so much like you. Your Mr. Sparkly Eyes was chasing her about and they were both laughing. Her little face looked so much like you. I woke up from that dream, smiling. I can’t wait to see this in real life. Your Sparkly is just as excited for your baby sister as I am. A lady passed us the other day, carrying a infant carrier and he just looked at me and said, “I can’t wait for that to be you.” I know why. He knows how much I need your sister. He knows I need to smile more and he knows she is going to help so much with this. He is right. As always.

Alright little man. I’m going to end this before your brothers get home. I miss you. I love you. I hope you are safe.

xoxo

P.S. Dear Rock and Ro Marathon Runners, Donators, and Helpers,

Thank you. Truly. What an amazing thing it is to see the way Ronan has impacted your lives. So much so that you are letting him make you the most beautiful, selfless souls that exist. Thank you for believing in him so much that you have allowed your lives to be changed, for the better. It is one of the most beautiful gifts that he has left. I am so thankful and honored for all of you. I can’t wait to see you all next year and run the race with you.

Magic Meg. You forking rock. This was all you. Thank you for taking over and making this marathon such a huge success. This would not have happened without all of your badass hard work. Ronan thanks you, too. I love you.

P.P.S. We are accepting donations until January 31st so feel free to keep them rolling in! Thank you all.

xoxo

http://www.firstgiving.com/fundraiser/rockandro/rockstar-run

It’s a real life Poppy!

Ronan. So, in this life now without you, you know I’m not used to really good things happening. Even when really good things happen to me, they always come with me thinking the worst case scenario for what could ultimately go wrong. It’s a given in this new life without you. The one that I am left here living, where I thought you would never die, because our love and those doctors, would save you. How I absolutely knew that nobody would ever make us be apart because the love between the two of us, was so strong and unlike anything the both of us had ever known. Of course you were going to get better. Of course you were going to survive. Yet, somehow… that was not the outcome. I will never know why and even if there was a reason written out in black and white, it wouldn’t be good enough. Nothing in this world will ever be worth the death of you. But, some really amazing things are happening due to your death. It feels so wrong to write that, but it is the truth. Had you not died, the things that the world is spitting out at me, would not be going on.

I told your Sparkly the other day, “If Ronan had to die, you can make damn sure I am going to make something amazing come from it. He will change the face of childhood cancer.” I hate that it had to be you. But baby, just maybe, someday, another little boy or girl won’t have to die from this disease because of the awareness you are bringing to it. We as a foundation, are preparing the best we can for all the good you are bringing. We’ve had a fire lit under us in the best way possible. I am thanking you, our love, and the most amazing people in the world who are so touched by our love story, that they want to help us change this. I am so amazed at the way you are still inspiring so many… but I was your mama, so it’s not surprising to me at all, Ro. Your beauty and spirit lives on through so many. I am trying to find comfort in that as much as I can. It truly is what keeps me going.

I had my first ultrasound today. The one where I got to see, (insert british accent here)”Poppy!” in a picture for the first time. Your daddy went with me. We were waiting for my OBGYN. The one who delivered all 3 of you. I was nervous. I told your daddy I expected there to be no baby, or for this baby to die. Am I an awful, wretched human being for saying those words? I thought I was for about .3 seconds, but then I decided I was not. I just know the worst now, so those thoughts are a given. Your daddy said, “The baby is not going to die.” I wanted to say, “That’s what you said about Ronan,” but I bit my tongue.” We went back to the ultrasound room. I wondered if Dr. Schwartz would bring you up. I had a panic attack thinking to myself, “What if she doesn’t acknowledge Ronan and what happened?” That would have destroyed me. She came into the room, Yelling about how she needed to make sure there weren’t two babies in my stomach. The mood quickly shifted after that after she told us she knew we had been through the ringer and how sorry she was. She asked a lot of questions about how I was doing, feeling, and if I was still depressed. I told her I don’t think it’s depression after losing a child. I think it’s just a heavy grief that one will always have, but I am learning to manage it. She asked about medications. I told her I wasn’t on any. Your daddy piped in about Ambien but quickly corrected himself saying I hadn’t taken any since before Washington. So glad I threw that shit away. She asked if we were excited. I just answered her as honesty as possible. I said I was more just scared and nervous. She said she understood starting going on and on about how she knows I am going to have anxiety with this baby, times a million. She told me she would do ultrasounds on me every week if that’s what I wanted. I don’t know if that will be necessary, but I appreciated the offer. I cried a lot during my ultrasound due to missing you so freaking much. I heard Poppy’s heartbeat and I wish I could say it filled me with so much happiness and joy, but it didn’t. I am trying not to be too hard on myself. I know this is going to take time. Don’t get me wrong, I am happy. But my happiness comes with just as much sadness, too. I’m not going to pretend like it doesn’t and I’m not going to beat myself up over it. It is what it is, Ronan. This baby will be good. I know this. This baby is going to be so unbelievably loved. This baby is going to be a part of you and what could be better than that, besides yourself? I love this baby already. But it doesn’t lessen this pain or make me miss you any less. If anything, it makes me miss you more.

Poppy is real. Poppy has a heartbeat. As of now, Poppy is safe. I know in my heart, that you will make sure this baby is going to be fine.

I just finished up a board meeting. Long night. Lots of love, excitement and laugher in our house tonight. I am so lucky, even without you here. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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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

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo