Your little footprints, are going to leave big marks

Ronan. Hi baby. What are you doing? I hope you are sleeping, peacefully and dreaming the sweetest dreams. I hope you are visiting all of our special friends and family in this world and giving them all the sweetest dreams possible. I hope I get to see you tonight. Today started off lovely. Lovely in every way, without having you here. Tricia asked if I wanted to go to Hot Yoga with her. I’m not ready to go back to that yet, as I am too angry at the world. I asked her to go with me, around noon, on a hot hike instead. I felt the need to take my anger out on the mountain today, as I have done every day this week and I wasn’t going to let the fact that it was noon and 105 degrees out; stop me. We kicked that mountains arse today, and then some. I love my bestie for being crazy enough to do it with me. We ran down the mountain as fast as we could; without falling on our faces. It was hard, but felt good. The sweat dripping from my face stung my eyes so badly that I had to pull over and wipe them for a while, so I could see enough to drive again. I was relieved to feel the sting from the sweat as it gave me a break from my tears. I felt like I was going to pass out as I sat in the car and tried to pull myself back together. I didn’t care.

I came home, hopped in the shower and than went with Danielle and Tricia to get our tattoos touched up. All of ours have faded, so we went to get them fixed. I thought Tricia was going to pass out from the pain. I sat with her as she squeezed my hand and shut her eyes. Her little star looks so much better now. I went after her and enjoyed the pain of having my little purple stars recolored, a darker purple. The pain that is so totally addicting. I love it because once again, it is a change from the pain I feel all the time now. Danielle dropped me off at home. It felt good being with those two today. I miss them so much. I was supposed to go out to dinner with them last night; to celebrate Danielle’s 4th of July Birthday…. but I just couldn’t do it. I was tired with a headache and the thought of getting ready and going to Chelsea’s Kitchen; with tons of people, was just too much for me. I felt awful though because I am never here to celebrate D’s birthday during the summer. And she deserves to be celebrated for being such an amazing soul. Today was important to me, to go and to be with those two girls. The time with them, is always special to me.

After D dropped me off, we got ready to pick up Liam from a Birthday Party, and than headed to the AZ County Club to meet Kenny, Stacy, and their kiddos for some family fun time. I thought I was going to be o.k. I had a little anxiety about going in at first, but I talked myself down from it. The boys’ were so happy to be there and we were so happy to be meeting our dear friends for some swimming, playing, and dinner outside. I had the chance to say hello to a lot of wonderful women. Some of my busy little bees. I loved seeing them and getting a chance to give them hugs and tell them thank you. I hope they could feel all the love in my heart I have for them. I am so thankful and proud for the beautiful people who are so in love with you, that they want to help and make a difference. The fact that these strangers, are taking the time out of their busy lives, to help ours so we can leave your little footprints all over this world, is such a beautiful gift, Ro. I cannot do this without the help of these selfless souls. They all make my heart smile. One of the women I met tonight was named, Sassy. For real. Does it get any better than that? I think not.

We sat and had dinner. I tried to eat. Kenny’s exact words to me were, “Hey sister. You may be able to get away with that not eating crap at home, but not on my watch. Eat. That Coke Slurp Buster crap is not going to fly tonight.” Made me laugh, so I tried my best to force feed myself. And force feed myself I did. But then it happened. The little boy, sitting across from me; Kenny and Stacy’s family…… FUCK. The sweet little boy, who looked so much like you. Even your Daddy knew it; as soon as he saw him. He instantly asked me if I was going to be o.k. I smiled and just quietly said yes. I tried to be o.k. But I ended up crying at the table, to his mom, telling her how much he looked like you. She said she knew, that she had talked about it with Stacy before we got there. She said she was sorry. I told her not to be sorry that he so much reminded me of you. I was the one who was sorry for crying like a psychopath; but there was nothing I could do. I got up, as I was feeling so sick to my stomach. I went to go and find your brothers. I sat and watched them play basketball for a while and tried to ignore the waves of nausea washing over me. I was having such a physical reaction to seeing this little boy, that I ended up in the bathroom, throwing up every thing I had just eaten. Good thing I have learned to carry a toothbrush and toothpaste with me at all times, because I never know when this is going to happen. And it happens so often now, that I am just learning to get used to it. Add it to the list of many things that I am going to have to get used to now in this almost unlivable life without you.

We ended our night with happy kids, hugs, and an ice fight. I sat and watched as all of our kids, threw pebble ice at each other and laughed away. I looked up at the sky and could almost hear your giggles of laughter, as you would have so loved to have been in the middle of all of this. It is so wrong that you are not. I am so sorry. I love you to the moon and back, my spicy monkey. I hope you are safe. I have to say goodnight now. Too many tears tonight to continue on. Love you, Ro.

xoxo

I love my sisters. So very much.

Quinn and your shadow

 

 

Ronan. I really tried to have a good day for you, but everything seemed to hit me so hard today. Your brothers slept in late and so did I. I tried to dream about you, but instead I had mostly dreams of nothing of importance. I woke up sad from not being able to see you in my dreams. It is something I hope for every night. I tried to get the day off to a good start. I kept getting emails about the event that was being held at The Biltmore for your Foundation and each one continued to put a smile on my face. I thought today was going to be another o.k. day without you. It was not. It all started with opening my wallet and there was your little social security card. Ouch. I then looked inside my purse for something and found your little I.D. band from the hospital that you used to refuse to wear, so we would break the rules and I would attach it to your pole or onto my wrist instead. You used to throw such a fit about wearing it. The straw that broke the camels back was I was trying to get your brothers ready for the beach and Liam, as always, was giving me a hard time about letting me put on his sunscreen. I was chasing him around to get it on him and I finally just looked at him and said to him angrily, “You need to think about how you are acting, your brother would give anything to be wearing sunscreen right now.” He looked back at me and said, “Who, Quinn?” I then looked back at him and said, “No, Ronan.” I was filled with such anger and sadness that I just started crying right then and there. Right in front of your brothers, and I am supposed to be the mom who is holding all of us together. At that moment, I just couldn’t do it anymore. I broke down right in front of them and there was no stopping it. I sobbed and they both just sat and watched me. Quinn came over to hug me, and Liam just kind of went off into the other room. I quickly packed up our beach things and threw on my big sunglasses so they could not see that I was still a wreck. I took them down to the pool and to let them be distracted by their cousins whom they spent the next few hours with playing in the pool and at the beach. I went down to the beach with them and sat on my towel and just watched them play while I cried and cried and cried. I called your Nana because I have not spoken to her in weeks. I couldn’t really talk to her so instead I let her listen to me cry. She cried with me and we said as much as we both could, which ended up being not a lot. It was good just to have her be on the other end of the phone with me though. I just needed her to be there so I could cry to her. After I got off of the phone with your Nana, I joined the boys in the ocean. At one point, I was playing with Quinn in the sand. He was standing up and there was a little shadow next to him. He said it looked like it was a little mini version of you. We pretended it was you, and he reached down to hold your hand. I took some pictures of it, because it really did look like a little you. We sat and played with the little shadow for about 10 minutes. It was something so simple and sweet but it made us both smile and laugh. These days, we will take any little sign of you that we can get.

The rest of the day was kind of a blur. We spent the evening with Kenny and Stacy and their kids. We went to dinner and had a good time. They both make me so happy and I love them like family. We are so lucky to have them as friends. I then got a text message from our cousin, Tiffany who said to meet them at the beach as they wanted to do something special for you tonight. We met them down there at 8:30 and all of the kids ended up lighting off sparklers and running around for you. It was so beyond when sweet. Bittersweet. I sat back and watched all of your cousins running around so happy and carefree. I wanted you there so badly. I could have sworn I heard you laughing in the background.

All though the night I kept getting text messages about the event at The Biltmore. Everyone said it turned out so beautifully. I almost have don’t even have words for how many people came together for this in such a short amount of time. The love that surrounds us is almost as beautiful as you, Ronan. These people, most of them whom we don’t even know, have come together because of you. That is what an impact you have had on their lives and I know you will continue to do so. All while holding my hand while I let your little soul guide me. We will make a difference, together. Thank you again, to everyone who worked so hard to support my sweet baby boy tonight. Your love means everything to us. Someday, when I am feeling a little stronger, I will be able to be a bigger part of this and turn it into something huge. As I’ve said before, this is just the beginning. Childhood Cancer has know become my passion in life and I am going to work so hard to raise awareness and make a difference. Ronan deserves this as do all of the other children who are fighting this in the world. They need a voice and I have no doubt this is now my calling in life.

Off to try to sleep now as it’s been a very long day. I can’t wait to hear all about the event tomorrow. Thank you all again. Thank you for allowing Ronan to be your brightest star in the sky. I love you all.

Sweet dreams my little man. I love you to the moon and back. I miss you so much. G’night Ro.

xoxo

 

 

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

“I soooo happy, mama”

Last night, we were able to leave the hospital. Ronan was fast asleep in his hospital bed and about 10:30 p.m. the nurse came into the room and said we could leave. I gathered up our things, managed to carry our bag, Ronan’s blankets, and pick up my baby boy and carry him to the car. He woke up just as we were waiting for the elevator, wrapped his arms around me and said, “I soooo happy, mama. I love you soooo much. I sooooo proud of you.” The tears welled up in my eyes and I felt like my heart was going to explode. It is things like that, that make all the bad parts of what we are going through, disappear.

Today, I am so thankful for so many different things, big and small. I am thankful that I have such a strong mother-in-law. Anyone who knows my mother-in-law, knows what an amazing person she is. But it is her strength as she is standing by our side through all of this that makes me love her, adore her, and look up to her more than I could have possibly imagined. I think she is possibly the strongest women I have ever met in my entire life.

I am thankful for my all of my dear friends. My Niki, who loves to leave me long voicemails, pouring her heart out to me. The fact that after a 5 minute phone conversation she can tell by the sound of my voice if I am having a weak moment or if I am doing o.k. And if she can tell that I am not doing well, she’ll call me back up to leave me a message or listen to me vent, cry, or not even talk at all. My Tricia, who is flying to NYC just to hold my hand through this. Who knows what it means to be a real friend, even in such an awful situation. She fills me with encouragement, hope and love. For the phone conversation I had with my Susie today, who doesn’t live here but because of our friendship and bond, it doesn’t make a difference in the love we have for each other. She is so understanding, supportive and knows just how to make me laugh when I need it most. My dear Kotalik family. They too will be in NYC with us and they have no idea how much that means to me. We are going to need all of the love and support we can get out there.

I am thankful for my strong husband, who refuses to give up this fight. Who questions the doctors every move, decision, and treatment option. For my amazing, strong twin boys. Their smiles and giggles light up my world. The way they treat Ronan, love Ronan, and take care of Ronan. They are so brave and beautiful. I love to see the way Ronan lights up as soon as they walk into a room. The bond the 3 of them have is like nothing I’ve ever seen before. Their souls are connected and it will forever stay that way.

I am thankful for an amazing lady named Dr. Adams. She is the doctor who is in charge of Ronan’s stem cell transplant and when we met with her yesterday, we were prepared for a fight with the things we are requesting for Ronan and how we are questioning everything. She could not have been more compassionate, loving, and open minded. She listened, stated her opinions without being too overbearing, and agreed to listen to what Dr. Kushner from Sloan Kettering had to say regarding Ronan’s stem cell harvest. I know from listening to her and looking into her eyes, that she wants nothing but best for Ronan. She is amazingly brilliant and it is so nice to completely trust someone with the life of your son. I trust her 110%. She has poured her entire life into something she believes in and is passionate about. I will forever have the utmost respect and love for her.

I am thankful for the little things too. The fact that we have a house, food on the table, and the means to get Ronan the best treatment possible. Thank god for insurance. I am thankful that tonight I am going to go out to enjoy my husband and friends to the fullest. After this past week in the hospital, I really need some time with Woody. Everyday, I find myself humbled and thankful for pretty much everything in my life. Some things are new, some are old, but all are important. The thing I am thankful for most though is another day looking into Ronan’s big blue eyes and another night sleeping with him snuggled up beside me. He is such a precious gift to our family. We as a family will never be ungrateful for the petty things in life again. Ronan has put everything in perspective. What a big job for such a little boy.

P.S. Some have you have asked what we are going to NYC for. We are going there to have Dr. La Qualia, from Sloan Kettering, resect the tumor that is in Ronan’s abdomen. He is one of the  very top doctors at doing this and has been given the nickname of “The surgeon of the Angels.” They say he has a gift; a magic touch. We only want the very best operating on Ronan. He is our best shot at saving our baby and getting all of the Neuroblastoma out of his body. He knows what he is doing, knows what to look for, and has been recommended by everyone we have talked to. So NYC, here we come. <3<3<3

Have a beautiful weekend my beautiful friends.

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!