A Barefoot Hike and Little Socks

Ro baby. Everyone is asleep. It is late. We had a late night out tonight. We went over to The Willets’ house, for dinner and to catch up and let the boys play. I so missed you tonight. I was so sad you were not with us. You loved those boys so much and used to always keep up with them, despite your younger age. I sat back and watched as L and Q, ran around with Gay’s three boys all night long. I used to have 3 too. Where are you? It feels so wrong to be the mom of only two boys now. I almost can’t take it. But it was nice to be with all of them tonight. I will say this for the rest of my life….. but we truly do have the best friends. Some are friends we have had for a long time…. like the Willets. Others are new and who came into our lives at the beginning of all of this, like Melissa and her family whom we had over last night. All are beautiful. After Melissa, David and their kids left last night, your Daddy goes, “You have made some really amazing friends through all of this.” I just smiled and told him I knew. I do know. I think about it all the time. It is another one of those gifts you have left behind. Our lovelies are everywhere. We had a nice time tonight as being with the Willets is calming to my soul. We love them so much. I love how laid back they are, funny, kind, and crazy. I love being surrounded by their boys and your brothers. I remember how much you loved being with them. I hope you were with us tonight. I think that you were. I was showing Gay how to put Pandora on her iPhone as she is new at all of that iPhone stuff and I’m an old pro. As I was playing with her phone, mine which was sitting on my lap, started playing music. Katy Perry’s, “Firework,” just started to play. I thought of you. I hope it was you. I think that it was. This life is so strange now. Nothing makes sense. I don’t know how it ever will again.

So, this WordPress Blog is so detailed. I have a whole stat tracker which gives me very specific details on how all of you lovelies are reading this blog. For example, on May 10…. a day after you passed away, Ro… I had 55,923 hits on this blog. On that one day alone. I check it out every few days, just out of curiosity. It tells me what search engine term people are using to find out about you. I get a lot of weird things, such as today… somebody searched this… “me and you baby dolls can drink.” Um o.k. Random and weird, but I guess I tagged Baby Doll before since that is what I used to call you and your website came up. These are the most popular search engine terms used from today.

rockstar ronan 1,438
rockstarronan 352
rock star ronan 93
ronan rockstar 54
ronan thompson 45
rockstarronan.com 43
rockstar ronan blog 43
www.rockstarronan.com 42
maya thompson blog 22
the ronan thompson foundation 21
rockstar ronan dies 16
maya thompson 15
rockstar ronan com 14
ronan thompson foundation

I get some funny things, some disturbing things, but most of all the two things that are searched the most are “Rockstar Ronan,” and “Rockstar Ronan dies.” The last one rips me to pieces every time. I often catch myself thinking, “Wait. What? Ronan died? How can that be true?!” It’s as if I am the blog reader, not the writer. Oh, how I wish that were true. My body than returns to itself, because reading those words truly does feel like an out of body experience. I have to remind myself that you, my beautiful son, did die of Cancer. I sometimes cannot even take reading this, so don’t ask me how I am able to sit here and write this. I still have no clue. One day, I will sit back and read all of this, but not today. I don’t know what I am waiting for, but as of now… it’s the writing that I need to do. The reading, can wait. I know there is no way I am ready to read what I have written in the past. It is going to be so painful and everything is still too fresh and raw.

Ro baby. I started that last night but had to stop due to the Melatonin kicking in. I had dreams about you. They weren’t happy, but they weren’t sad either. I don’t remember what you looked like, but I remember asking you questions. I asked you if you were scared. You told me, No. I’m glad for that. I hope you’re not scared as that is one of the things I worry about most. I still feel like I have just forgotten you somewhere, and that you are all alone in this big, big world. I miss you so much. I am glad I got to dream about you last night. It does not happen often.

I woke up this morning, knowing that I had to have a productive day, regardless of the day off that your brothers had from school and your Daddy has off from work. I got up and showered. I messaged back and forth a bit with a girl named, Katie, whom I have never met, but I have wanted to meet for some time now. She is just a friend on FB and owns an adorable kids clothing store. She is always reposting this blog on her business FB page and I’ve wanted to stop in for a while to tell her thank you. She told me she wanted to run some ideas past me so I said I would stop by this afternoon. I took Quinn with me. I walked into her store, Garage, and instantly fell in love. It is filled with all the things, your stylish self, would have gone crazy over. You loved to dress so sharp and stylish. I met Katie and felt like I had known her for years. We sat and got to know each other, while Quinn played and explored in her store. We went over an idea she has, which I’ll be talking about a little more once the details are finalized. I left her with a bunch of your bracelets, the Naughty and Nice version. I have to be careful about the people I partner up with, who want to help with your Foundation…. but everything with Katie felt right. And just as I was getting ready to leave, “Landslide,” by Stevie Nicks came on. If that wasn’t a sign right there, I don’t know what is. I started to tear up, and Katie told me I could sit and listen to it if I wanted. I told her that I had to go, because I knew if I did stay and sit, that I would be a uncontrollable mess. I left there with tears in my eyes but a smile on my face. Thanks for being there with me today, Ro.

I ran a few more errands with Quinn. Talked to NY Miss Macy. She has been with Tricia all weekend long as Trish flew to San Francisco for this long weekend to spend some time with her. I love that. I so wanted to go, but it is not the right time for me to be away from your brothers. It made me happy though, to know my beautiful besties, were spending some quality time together. I sometimes cannot believe that had it not been for you, that Macy would have never been introduced into our lives. She is a gift that I will treasure forever. For as big as the hole in my heart is now, I know you are trying to fill it up as much as you can with people like Macy. I know that you are still working away, trying to find ways to make me grateful and happy again. Your gifts come in so many different forms now. For that, I am grateful.

After finishing up my errands with Quinn, we returned home and the rest of the afternoon was spent doing things around the house. Checking things off my shit list, left and right. I picked up my friend, Julie, who lives right down the street and I took her Inferno Hiking with me. She loved it and almost threw up, but did not. She is a trooper:) I am also glad to know that I am not the only one who sometimes throws up after a hard workout. We got to the top and she was saying that it was kind of like Hot Yoga. I told her exactly, except it was much better:) I can’t wrap my head around being peaceful enough within myself to go back to Hot Yoga. I told her how Inferno Hiking to me, is very intense, yet peaceful. She completely agreed. As we were heading down, Mountain Mike, was on his way up. So funny that we always seem to be there at the exact same time, even though the time that I hike, is never consistent. We said our hellos and I introduced him to Julie. He continued up as the two of us then started on our run down the mountain. It was the perfect ending to this day as you know how hard weekends are for me.

Tonight was spent quietly around the house. Your daddy went to the office and Liam and Quinn are snuggled up together on the top bunk of their bed. I have been busy putting all of the laundry away. It’s taken me forever. I have been washing the same pair of your socks for months now. I refuse to put them away. I just wash them over and over. I carry them around with me. I can’t believe I don’t have your little feet here to put them into. I can’t believe how I wander around the house, doing busy things and often just walk into your room, expecting to see you playing. Your room is still the way it always has been. I don’t want to change a thing. Liam often plays in there. I like to write in there and sometimes sit and quietly think. I still cannot wrap my head around the fact that you are not here to play and sleep in your room. This all still seems like a bad dream, except I cannot seem to wake up.

Where are you baby? Are you playing with Esther. Please tell me yes. Tomorrow, it will have been 4 months since that sweet baby girl passed away. Your 4 months will be here soon as well. Please watch over Esther’s mama tomorrow. Well, everyday, really… but tomorrow extra close. I am worried about her. I feel such a need to go and see her. I promise I will get back East to do this soon.

I think this may be all for tonight, Ro. I have some homework to do before I see Dr. Joanne tomorrow. She took you with her when she went barefoot hiking this morning. I’ll send you the pic she sent me. I love you to the moon and back, baby boy. I hope you are safe. Sweet dreams, my love.

Dear lovely readers…….. Many of you have been asking about Ronan’s bracelets and where you can get them. I am almost completely out, but if you live in AZ…. there are some places that you can get them. Here are the locations::::

The Water Connection:::::::Nice Bracelets only::::: 3929 E Camelback Rd. Phoenix, AZ 85018

Green Cleaners::::Halle has Naughty only::::: 3912 East Camelback Road, Phoenix, AZ 85018

Garage::::Katie has both Naughty and Nice:::: 7144 E. Stetson Drive, Scottsdale, AZ

For my out of town peeps. I PROMISE, I’ll let you know when more are available. Should be later this week. Thanks for the LOVE and SUPPORT.

xoxo

You speak in every curling wave

 

 

 

Ronan. Today started off as good as it possibly could, without you here. We woke up and Liam, Quinn, and Layne spent the morning playing together. I put on my good mommy boots and made them all a huge breakfast. Waffles, fruit, eggs, bacon, sausage…… you name it, it was on the table. I thought of you the entire time as I was making the scrambled eggs, just as you would have liked them. You used to insist that I made the best scrambled eggs ever and would only eat them if I made them for you. I loved that so much. Soon, Layne went home to get ready for the day. Your daddy took Quinn and went off to Costco and to run some errands. I stayed here with Liam and we just kind of had a lazy day. I cleaned and did a lot of laundry. I had a few things trigger a lot of tears today and I did a lot of throwing up. Your dad came home to me, a wreck, just sitting on the bed, bawling. Quinn took one look at my face and sat down with me at told me he loved me and started rubbing my back. I forced the tears to stop and got up to help them unpack the things from Costco. Your daddy and Quinn came home with my very own surfboard for me. It almost cheered me up, but I mostly just couldn’t wait to get out into the water so I could get my ass kicked. I was on a mission. Mission accomplished.

I got your brothers all ready for the beach and we headed out to meet your cousins. They had their stuff in the sand, but they were all in the pool. We set our stuff next to theirs, Liam and Quinn headed out to the pool and I grabbed my board and paddled out into the ocean. The ocean seemed as angry today as I was. The waves were ridiculously big. I didn’t care. I paddled out as far as I could, which ended up being really far. Wave after wave threw me from my board and under the water. I continued out there, to try to get past them. I got up a few times, I asked for your help. At one point as I was paddling out, I looked up and a huge wave was getting ready to come crashing down on me. I think I said, “Oh shit,” out loud and ended up flying off my board and the fin ended up hitting the back of my arm really hard. I almost thought it was sliced open, that’s how badly it hurt. Turns out, it was not…. it turned into a big welt and bruise instead. No big deal, yo. As much as it’s hurting tonight, I am choosing to ignore it because all I can do is think about you and all the pain you felt, especially towards the end of your fight. This stupid welt on my arm has nothing on you, Ro. I surfed for a couple of hours and the current ended up pushing me really far away from my starting point. Tiffany was watching from the shore and when I finally got back over to her, she said she was a little concerned that I was going to end up in Mexico. I told her I didn’t realize how far away I had gone and that I was ALMOST a little scared for my life at one point. But not really because fear doesn’t really seem to exist anymore.

After my little surfing fiasco, I went to join your brothers and cousins at the pool. They are such little fish and didn’t stop swimming in the pool and the ocean until 9 tonight. We were down at the beach for 7 hours today. We met up with your Mimi and Papa, and Uncle Larry and Aunt Joan. Tiffany and her kids too, and we grilled up a big dinner by the pool while all the kids continued to swim. It was such a sweet summer night. Of course, the only thing missing was you. Quinn ended up cutting his little thumb on something in the hot tub so we had to doctor him up. I took him into the bathroom as he was very upset about his thumb. I changed him into his warm clothes, looked at his thumb that thanks to Tiffany and her first aid kit, we had it bandaged up pretty good. He was really upset about it and I just quietly explained to him that I was sorry he was hurt but he is going to get hurt in life; it’s just part of being a kid. I talked all about you and how after all the things that you went through, that were so painful, that you hardly ever cried. I don’t know if it is a good or a bad thing to make comparisons to you and how tough you were to Quinn. But tonight, it needed to be done and it felt right so I did it. I think more than anything, he was just tired and needed some mommy love. We packed up our stuff and Liam helped me carry everything to the condo while Quinn went on and on about his thumb. As soon as we got upstairs, I put him in my bed and 15 minutes later, he was out like a light. Worn out from his day at the beach and I know sad from missing you. Liam told me last night as he was crying that he was homesick. I asked what he exactly was homesick for. He told me his bed and you. I held him and told him we were all homesick for you, but now you lived in our hearts so you will always be with us. As much as I could tell you this seemed to bring him comfort, it didn’t. It didn’t help me either. I don’t want you in my heart; I want you back here with us, where your freaking belong.

After a long day, I ended it with talking to Stacy. What a perfect way to end my night then with a phone call from her. She had a lot to tell me about meeting with the busy little bees today in regards to the event that they put on at The Biltmore for you on Friday night. I sat, cried, and listened as she told me about meeting with the girls and how amazing they are and how much love they have in their hearts for you. I am still in awe of how quickly they put on this event and how many people came out to support it. We talked about how after the summer, I would like to sit down and pour all of my energy into making this an event something we do every year for you. For others, because as I’ve said before, we have to raise awareness. I cannot believe the army of people that we already have lined up to help us with this. I don’t even know how this happened. Actually, I do. It is all you, Ronan. You are changing lives everywhere. I cannot wait to personally meet all the people who helped with this event and give them all the biggest hug from you. The passion that you have created is astounding and once again, I am so proud to be your mama and your best friend. I miss you, Ronan. I know you are here though. Thanks for the little sign tonight that comes from my Pandora. Right now, as I’m writing this, your song came on. The song that we played for you every time you were left alone in the room for your radiation. The Killers, “Human.” You are such a special little soul. G’nite best friend. Thank you for visiting your daddy so much in his dreams lately. I know you will come to be when the time is right and I can get off of this damn Ambian. Love you to the moon and back, baby.

xoxo

 

Everything’s not lost, but really it is

Ronan. You were everywhere today. I had to stop and catch my breath a few times just so I wouldn’t throw up. I am reminded of you in everything and everywhere. In the whole avocado that Quinn had for lunch. In the Mickey Mouse beach bag that Stacy carried her kids’ beach stuff in. In the Star Wars swim trunks that Mac had on today. Even as I watched your cousin, Jake, eat some Mandarin Oranges at dinner. I had to fight back the tears over all of those things today. You loved all of them so much. It’s so strange to see these things that have such little meaning to everyone else, but they mean everything to me. I don’t know how to deal with all of those little things because every time I see things like this, I just want to curl up and die.

I am not living. I am surviving. And it sucks. I still don’t understand why you were taken away from us so quickly. I think about this all the time. It kills me that everything changed so suddenly and how rapidly your disease progressed. I swear it happened over night. Your daddy and I fought so hard for you. We talked to the best doctors, researched everything we possibly could and it still was not enough. It all happened way too quickly and I’m still trying to make sense of something, even though I know I will probably never get an answer. I deserve one though and I am angry at the way the doctors just seem to want to sweep you under the rug, like you never existed. I want to hear from them that they are sorry. I want to them to look me in the eyes and see their pain because  they couldn’t save you. I want some sort of acknowledgement that you were here and they are sorry that they couldn’t save you. I know this won’t make you come back, but I want them to hurt the way I am hurting so that maybe they will work harder to save the life of the next child who is going through something like this. I know that these doctors work hard, but not fucking hard enough because you are gone. I want someone to blame, even though I know nobody deserves to carry the burden of this. This is the cause and effect of our insanely mad world. It is the only way to explain how such a thing can happen to a child or a teenager. Complete unfairness and insanity. There is no other answer.

I ran on the beach tonight and was so not feeling it. I pushed through for you though. I sat and watched a daddy pulling his little girl on a boogie board and then I watched as the mom came and swooped her up and off they went holding hands, running down the beach. I wonder if that mommy knows how lucky she is. I would have given anything to have been that mommy today, running down the beach and holding your hand. Instead, I get to watch somebody else doing it. It was another one of those outer body experiences that I seem to have all the time now. After I watched the mommy and little girl, I laid down and the sand and looked up at the sky and just cried. I didn’t want to finish my run, but you forced me to get back up and pound out the last 2 miles. The waves chased me a lot today and at one point I couldn’t run fast enough away from them. My sneakers ended up getting soaking wet. I thought of you and pretended that the waves were your little feet trying to run after me. I have to hold on to things like this; this imaginary life I have made up in my head just to get through the days without you.

I heard from, “The Stranger,” again tonight. Except now, I know her name. I liked hearing from her and a bit of her story. It took a lot for her to write her first email to me but I am so glad she had the courage to do so. Her words helped me last night when I was really needing it. She talked about how she struggled for nights to write that email and then to actually send it. After my day yesterday, her email could not have come at a more perfect time. I know that was you, Ro. Your little way of getting to me. Thank you for that.

Quinn and Liam have their cousins, Jake and Carter over for a sleepover tonight. All is quiet except for your big brother, Quinn is in bed with me watching Sports Center. I knew he would end up in here with me and not out in the living room with all the other boys. It has been so nice having your brothers spend time with their cousins. They have formed such a bond over such a short period of time and all the laughter and just watching them all be boys has made my heart a little happy. It is helping me to see your brothers laugh and smile despite the sadness that I know weighs heavy in their hearts. I’m watching them heal a little more one day at a time and I know a big part of this is the family that surrounds us. I am so thankful for that.

I’m so sad tonight, Ro. Your daddy is not here and when I talked to him on the phone I could hear how sad he was being at home all alone. Without us and without you. I don’t know what to do or to say except for to tell him I love him. I’m having a hard time talking to him about you yet because everything is too painful. When we do sit and talk about you we both just end up crying. I don’t think the crying is ever going to stop. I don’t think there are two parents who ever loved a little boy so much. I like to think that it is because of the love that your daddy and I have for each other which is why you were given to us. We love each other so much and you were such a gift. I just don’t know why you had to be taken away. And I don’t know how we are just supposed to go on because it does not seem possible to live our life without you. I’m clinging on to anything I possibly can, but it will never be enough and I honestly don’t know how I am going to survive this. This life hurts and this life is cruel.

But I am going to continue to fight through this because I know it is what you want. It is what your brothers deserve and your daddy too. But there is not a day that goes by that I wish the world would just swallow me whole. Every inch of my body hurts and misses you. That will stay with me for the rest of my life. I’ve somehow got to find a way to learn to live this new life without you. I promise I will try as long as you keep guiding me and giving me strength.

That is all for tonight my love. I hurt too much to write anymore. I love you to the moon and back my most beautiful boy. Sweet dreams.

P.S. Every song on Pandora tonight has reminded me of you. Are you the one making this little playlist for me, my sweet boy? Your gifts are all around. Everyday with you was the best day of my life. I love you, Ro baby.

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

Bone scans results…. kind of.

We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.

After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro 🙂

As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.

Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that  I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do.  Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.

After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.

We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.

G’nite and sweetest dreams to all of you.

xoxo

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo