The Fun Never Ends because I’m Traumatized for Life.


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Ronan. It’s been so long since I’ve written on here and I feel so much guilt for that. Not only that, but I miss writing on here to you so much. I’m hoping to wrap some things up soon which will free up some free time so I can start writing to you again on a regular basis. So much has been going on and it would take me hours to catch you up on things. I don’t have hours tonight as I have to get back to my other writing soon. For the most part, things are going well. The foundation is still massively busy and we have some great things coming up for the month of September. My hometown just put on our 3rd Annual 5k and it was such a beautiful success. So many beautiful faces came out to run for you and I am still in such awe of the way my little town pulls off such an amazing event. It just gets better and better every year.  Thank you to everyone for all of your hard work organizing this, all the amazing volunteers, everyone who donated items, and all the people who came out in support of my baby boy. I know how much work pulling off something like this is and I am forever grateful for your love and support in this fight. Thank you again so much.  Also, a huge thank you to Ashtown Brewery for an awesome event after the run. Best Brewery in all of Washington. Fo’ shizzle.

So, do you want to hear my VERY dramatic bedtime story tonight? I’ve got a good one as it just happened a few nights ago and I feel like I am still recovering from it. We are out in Washington for the summer like we always are. I am now feeling like every time we are here, I have a major freak out about something, but this one was the worst. That little Poppy sister of yours just turned 2 in April. She is the perfect mixture of a girly girl tomboy. She is my insanely smart, fiery little girl who has decided that TuTu’s are her favorite thing in life as long as she can be playing in the mud in one while being covered in bruises from her rough and tumble ways. She makes me laugh constantly with the way she speaks in full sentences and uses words that are way too big for a 2-year-old to be using. I am amazed by her and the way she lives her life so vibrantly and big, for being so tiny. Needless to say, she is the love of the my life just like the way you and your brothers are. I am so thankful everyday to you for her. She brings us all so much happiness and you know we need that around here. Anyway, back to my story… sorry I got off track, I’m that annoying mom that could blab about my baby girl all day long. I also am borderline obsessed with the age of 2. She is a lot like you at this age and it makes everything so bittersweet.

Let’s back up a bit. Your Poppy sister also has that light skin that bruises very easily. I guess I started worrying about her bruises about 4 months ago. It was like a little bird was sitting on my shoulder just pecking away at me and the voices started slowly creeping inside of my head. Bruises can be an early sign of Leukemia. I now know all the freaking early signs of every pediatric cancer out there and bruising easily is one of them. For the past 4 months I’ve pretty much ignored the voices as your sister has been nothing but healthy much like you which seems like a sick joke. I went on with life and got us all ready to drive us out here for the summer (solo road trip is a story for another time).We arrived safe and sound and ready to be in our favorite place on earth for the summer. My soul aches for the Pacific Northwest so badly as I miss it so much. Everything started out wonderfully, we had a great family vacation in Sunriver, Oregon, but then the, “My stomach hurts!!!!” started up from your Poppy sister. You know this is one of my triggers. My stomach hurts to me really means she probably has cancer as that is one of the first things you said to me a couple of months before we found a huge tumor in your abdomen. Poppy started saying it off and on, usually before bed when she wasn’t quite ready to go to sleep. I told your daddy. He told me it was nothing and kids get stomach aches. Yeah, but kids also get stomach aches and cancer and die, too. I know both worlds very, very well. I kept my eye on her carefully the following weeks where I watched her act like a totally healthy child.

I sing to Poppy a lot. We listen to music non-stop. We were in my old bedroom one day and as I was getting her down for her nap she looked up and me and goes, “I gonnnnnnaa hold yaaaaa, gonnnnnnaaa kiss armsss, Hey, Hey, Hey, Hey, big jet plane.” I started bawling. She just looked at me and started singing louder. “Gonna take you for a ride on big jet plane..Mama! Twinkle Twinkle Star!” It took me a minute and I had goosebumps all over my body. Big Jet Plane was one of your favorite songs and Twinkle Twinkle Little Star was the song I always sang to you, especially right before you died. She continued to beg me to sing to her, while she squeaked along with me, singing most of the words spot on. I fell asleep crying and holding her little body close to mine. She is doing so many of these little things that keep you so close to all of us, especially to her. I woke up from my out-of-body experience feeling a bit jet lagged to say the least, but so thankful that she keeps you so close to her heart even if she doesn’t even fully realize she is doing so. It means everything to me.

That evening, I was getting Poppy ready for her bath when I noticed 5 suspicious bruises going down her spine. They were perfectly round and in the shapes of small circles. I fucking flipped out. I felt my stomach drop. I immediately snapped a few pictures of them and sent them to our favorite lovie. (P.S. Names have been changed to protect the innocent). He told me the pattern of bruises were strange and wanted to know what we had done during the day or if she had fallen or had any kind of trauma. I told him no, that we just had a normal day and she was being her rough and tumble self. He told me not to worry which was completely lost on me. I was ready to throw Poppy in the car and either drive her to the hospital in Portland or all the way home so I could have her checked out there. After bath time, I took her upstairs to brush her teeth. She hates having her teeth brushed and fights me on it every night. Sometimes I just let her do it, but every couple of days I have to basically hold her down and scrub away. On this particular night, I don’t know if I scrubbed too hard or what, but her top gums started bleeding everywhere. Another sign of childhood leukemia. The sight of blood was enough to fly me over the coo coo’s next. I handed her to my mom and went completely mad. I started pacing back and forth. I called your Daddy and was crying hysterically. I listened to all of his rational reasoning but nothing was going to calm me down. I called our other little lovie, Rach, in New York. I seriously think this is how our conversation went:

Me: Rach! sobbing. I think Poppy has Leukemia. more sobbing. I told her all the reasons why.

Rach: O.k. I promise you she doesn’t, but let’s talk this out. Poppy cannot have Leukemia, this sounds more like an anemic  thing. If it will make you feel better, you can take her to get checked out. You can have her blood looked at. Do you want me to call the hospital in Portland right now? I’ll make sure they get you in and treat you like gold.

Me: Sobbing, still. I don’t know. Let me try to calm down, I’m not thinking clearly. I want to have her checked, but I’m not sure I can take her tonight.

The phone call went on for a bit longer. I also talked to your daddy again. Texted with Rach some more. All in all it took 4 different people, 3 of them being doctors, to calm me down. My mom was a wreck from watching me be a wreck and I don’t even want to tell you how upset I was that your brothers had to witness a bit of this as well.

After I was able to calm down, I tucked your brothers and sister into my bed where I watched them all sleep as I tossed and turned all night long. I woke up the next morning feeling like I had been hit by a truck. Poppy woke up, ready to take on the world as always. I usually want to take on the world with her, but I had decided that the world had to stop until I could confirm for sure that she did not have Leukemia. I texted our lovie the pictures again. He showed them to another doctor. He called me. “Sweetheart. What do you want to do? If you want to get her checked out, go and get her checked out, if nothing more for your peace of mind.” I asked him to fax in a doctor’s order to have her blood drawn at a local place in town. I got her ready, dropped your brothers at Nana’s cafe, and took Poppy to get a mother fucking pokie in her arm.

She was such a trooper. Oh, in no way did she corporate. She was straight pissed off once she knew what was happening. I had to hold her as she kicked, screamed and cried while I told her over and over how sorry I was. After the blood draw was over, the nurse tried to put a sparkly band-aid on her. She ripped it off and said, “I DON’T WANT A SPARKLY BAND-AID!” Little badass. I scooped her up in my arms, put her in her car seat, and called our lovie to tell him it was over as I cried and did what I do best which is beat myself up for being a fucking maniac. I know I’m not really a maniac. I’m just a mom who has been through the worst thing possible and because of that, my worry is constant. My worry never goes away. I don’t know how to fix that, but for the most part I manage it as well as I can.

“I feel horrible for putting her through that. This is not my finest moment in life, you know.” I continued to cry.

I got the whole, “Hey, don’t do that. Don’t beat yourself up over this. You did what you had to do. What you did is not an overreaction after all you’ve been through. You have every right to worry about this. Let’s just wait for the results and what ever happens, we will figure it out from there.”

I then put Poppy on the phone where he talked her while she smiled that gorgeous smile of hers at me. The pokie had already been forgotten by her, but not by me. I’ll never forget what I had to put her through to make sure that she was safe and the healthy child she deserves to be. I found out a couple of hours later that all of her blood work came back completely normal. I let out the sigh of relief that I have been holding in for months. I finally feel like I can breathe again and I know that won’t last forever, but for now it is enough.

Ronan, I must continue the rest of this later. It has gotten so late and my head is pounding. It just started to rain here and that seems like a little sign from you to shut things down and go to sleep. I miss you so much. So very much.

G’nite. I miss you. I love you. I hope you are safe.

xx

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13 thoughts on “The Fun Never Ends because I’m Traumatized for Life.

  1. Mary

    Oh Maya… I’m so sorry you always have this shadow of fear following you around. But don’t beat yourself up for being a “maniac” — I’m sure all moms who’d been through the particular hell of losing a child to cancer would’ve reacted the same. I’m so glad Poppy is fine. I love following her antics on Instagram. Did she ever hear the song “Big Jet Plane” or was that just an eerie coincidence? I got chills reading that. I remembered it was one of Ronan’s favorites.

  2. cherlo30

    Maya, so happy to read your post. You have such beautiful children. Little Poppy is adorable. Glad you are enjoying your summer!! Hold those memories near your heart!!

  3. jenny8117

    I cried reading this because I could have written this post myself! I have an almost 4 year old boy and a 2 year old girl. Because of reading Ronan’s blog, a few other blogs about little boys that die of cancer, I continue to be a complete hypo, especially about my little boy. Clearly because I’m so scared of losing him like you all have lost your little boys.
    He has light skin also and gets tons of bruises. But one night when I was particularly worried about him, I looked at his back during his bath and saw little red petachie dots. I knew then that it was all over for me and my boy. I sat there stunned and silent at the edge of the bathtub. I knew that I would have to take him to the ER right away, but until then, during the evening I would have to stop bonding with him. Nobody could have convinced me otherwise that he didn’t have leukemia. My husband was more worried about ME being insane that he was Brady.
    Of course the next morning the ER doctor asks me if he’s been sleeping on the couch for two weeks, had pneumonia, Etc. I said no, but what started this was he came down with thrush that went to his esophagus. For no reason at all……Of course our pedi told us that only kids with severely compromised immune systems get thrush after age 3. Thanks doctor.
    Just to make you feel a little better, the ER doc told us he can tell 99% of the time just by looking at a child if they have leukemia. A child acting normal with bruising or a little bleeding isn’t what he looks for, he says their color has to completely change and they have zero energy. Brady’s blood work came back fine also.
    I feel for you, I really do. Just like you, I know it will be another worry in time….and you have gone through the worst already. So sorry…

  4. Jane Bowlin

    Being a Mom and a worrier (with a vivid imagination), I can understand and and hugely empathize with every word. My children are grown, and now, with an adorable 2 year old granddaughter in the mix, I only worry More. — Many Blessings to you and your Precious family. ♥

  5. Summer

    Mama, I’m so sorry about everything that’s happened to you, and how it’s left this effect on you.

    One tip I have to helping cope with your fear is this:
    Those sort of fears have a tendency to build up inside you, and the second you see something that might give them some rational, they explode into a panic attack. Next time you have this sort of fear that feels like its building up, it might be best to just take Poppy to the doctor for a quick check up as soon as you find yourself continuously dwelling on that scary thought. (No pokies! Just a simple check up so he can assess the basis of your fear and calm you down) That way you can try to stop that fear in its tracks early before it ends up overtaking you later.

    I’m sorry you have to live like this, it’s so messed up and not fair that you have been traumatized to the point that you constantly worry about your beautiful healthy children. What you are feeling is a completely normal response coming from losing a child to illness, but that doesn’t make it any less fair. But I know you guys will be fine because Ronan is looking out for you. He’s the best big brother, he will protect his little sister his own way.

  6. KT

    Mama, was just thinking of you the other day!!! That Poppy just melts me. 😢 I can believe how big and handsome the boys have gotten too. Love to all of
    you!!!! xoxo 💜

  7. Amy R

    Your gift of writing is extraordinary and unique…I could read anything you write & can’t wait for your book! I love coming across your Facebook & IG posts (hello incredible photos!) but your blog posts are my favorite. I have 3 healthy kids and I’ve had freak out moments about their health for no good reason other than following a mom’s gut feeling. My dear, you have every single right to obsess and lose it whenever you want. I bet the fact that your were in Washington when you noticed Ronan’s eye for the first time has something to do with why you feel like you have a freak out moment every time you visit. Even though he wasn’t diagnosed in Washington, that’s where his cancer journey began for you. Take comfort in the fact that it’s ALWAYS okay for you to feel anything…and what better place to feel like you’re out of control with worry than in the comfort of your mom & your childhood home. You’re an incredible mama. Taking Poppy in was the right thing to do and I’m thankful that she’s a very healthy little girl! Enjoy the rest of your summer having some peace of mind. Just keep following your gut…and your Ronan.

  8. glenda1203

    RoMama,

    I’m so sorry for everything you’ve been through and you continue to go through this journey of FUCANCER has brought you through. Thank goodness Poppy is fine. I enjoy watching her grow on your IG. She’s a beauty! Miss reading your blog, but hope your book is coming along! Hope you are having an almost perfect summer w/ your family (almost perfect, never perfect without Ro) RoLove Always…. Always RoLove xx

  9. Rachel Brusseau

    I don’t have a child with cancer, but I have worked around them almost my entire career. All my kids have been subjected to blood draws because I thought they had cancer when they were fatigued or had bone pain or had belly pain or had excessive bruising.

    I lather up their arm with EMLA cream so they don’t feel the poke, I text their awesome pediatrician who puts in the order, and a couple hours later I feel better.

    Then I feel like SHIT that I put them through it, and put myself through the stress. I’ve seen so many little sweeties with “chronic sore throat” or “chronic fatigue” or “excessive bruising” end up having cancer, and no matter how hard I try I can’t get my brain anywhere else.

    My 17 yr old just made her own appt because she had lumps in her throat that won’t go away & fatigue. She didn’t tell me, because she doesn’t want me to worry. Turned out to be nothing, but see what I created???? A child with anxiety about cancer. Lovely. Parenting award for me please (not).

    I’ve haven’t learned my lesson though. If my 8-yr old has symptoms of cancer next month, I’m taking him in for a CBC. I’m with you on this one.

  10. stacy

    You’re not a maniac, it’s very normal. I worried about just by reading this. Much more you, for having experienced firsthand. I usually worry about my nephews in the same way with just a black eye or a persistent fever because I have some knowledge about pediatric cancer through this blog and others. It is quite normal and I rejoiced the end because I was really beginning to think you were going to have to go through this again and that broke my heart.

  11. boxersaz

    You need to take a deep breath during these times of worry and fear. Calm yourself so that your children will be calm and not carry this into their adulthood. Children are so impressionable and will remember the slightest things. Hold it together for all of you and your well being. I have had these types of irrational fears. It took a long time but it can be made to go away and be in peace.

  12. emmeejay

    My son didn’t even die of cancer, he died of complications from being born 14 weeks early, and even I have all of those same irrational fears! It’s so easy to say keep it together but til you’ve gone though the death of a child you really shouldn’t say that. It’s impossible to know how any little thing can send you into a panic that your remaining or new children are going to die at any given time. It never goes away. It’s heartbreaking and frustrating.

    Maya your kids are so kind and intelligent I’m positive they will someday, if not already now, understand why you are the way you are. I’m so glad Poppy is ok. I love watching her grow.

    Much love..

  13. emmeejay

    My son didn’t even die of cancer, he died of complications form being born 14 weeks too early, and even I have all the irrational fears you have! It’s heartbreaking and frustrating not being able to know how or when any little thing can trigger you to think your remaining or new children are going to die at any minute!
    Unless you’ve experience the loss of a child you really shouldn’t say to get it together or keep it together. It’s impossible.

    Maya, your kids are so kind and intelligent I’m sure they’re going to know someday, if not already, why you are the way you are.
    I’m so glad Poppy is ok. I love getting to watch her grow on Instagram.

    Much love…

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