A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

I didn’t kill the intern. I only made her black out and throw up.

Ronan. Shitballs. I am beat. I spent yesterday with Quinn, hanging out at Charisma’s. We went for a hike. We lounged around. We played basketball and some other game that involved Charisma kicking my ass. I’m not used to losing, but if I had to lose to anyone, I am glad it was her. She kicks ass and is such a good friend. It was nice to spend time with her and have a break from everything. We were up in her room and I was watching her get ready as I sat on the floor. She came and sat with me, looked at me and said, “How are you so calm? So serene? You’ve been like this since the day I met you. You just have this peacefulness about you.” I told her I didn’t know. That I think to myself if I naturally wasn’t this way, I don’t know how I would survive something like this. I then said to her, “Do you see why my anger has to come out in my writing? Because I don’t get it out, any other way. My writing is how I release my anger.” She said she understood. How she doesn’t know how I do what I do. I looked up at her. “Can you believe this fucking happened to me? To him? To us?” “No,” she said. “It’s unfathomable to me.” Later that morning, I was sitting on her bedroom floor again. She yelled to me, “I have something for you. I just thought of it and I want to give it to you.” She went to her closet and came back with a ring. It’s dark, sparkly, and beautiful. “I want you to have this. To wear it and think of me, every time you do. So you know I’m always with you.” I tried not to tear up. I slipped it on. Rings never fit me. This one fit perfectly. “I love it. Thank you. I will wear it and think of you. You give me strength. I will look at it when I am sad, and try to be strong.” My friend. I am so lucky to have her. She does give me strength. She is a fighter, just like I am. I feel stronger when I am with her. She has this way about her that makes me feel like I am capable, strong, and even though you are gone, you are still always with me. She is good at reminding me of that. I am thankful for her and the lessons she teaches me. “To thine own self be true.” Right, my friend? This is so fitting for you. You are one of the truest people I have ever known. I love you.

Quinn and I arrived home last night, around 11. I feel into a fast, long sleep. I dreamed about all things sweet for once. All things sweet, except you. It is o.k. that you are not visiting me in as your own self. I know it is you, visiting me through your lovie. If that is the best you can do as of now, I will take it. I woke up today, on a mission to get shit done. I did. I ran to Starbucks for my breakfast of coffee and nothing else. I had a mini pow wow with one of my board members to catch her up to speed on some things and vise versa. I unpacked and did laundry. I met up with Rissy Roo to go over her list of intern things to do which mainly just consisted of getting our toes painted all purple and sparkly. She saw through my twitter that I was going inferno hiking later. She told me she wanted to come. YAY! I was excited to have her. We picked a time to meet up and go. She came over later in the day and we left for our little hike of the day. I think it was a little over 100 today, but I didn’t notice on our hike of all things inferno and fucking insane. I didn’t notice until Rissy was about half way to the top of the mountain and I realized I had been blabbing my face off. “Shit, Rissy. Are you o.k.?” She looked like she was about to pass out. “Yeah, I’m fine. I just need some water,” she panted. “O.k. let me know if you need to stop again.” We continued up farther. Me: Blah, blah, blah, blah, blah. Up the mountain I go. Is it hot today? I notice nothing. Is it hard today, this mountain climbing of mine? No. Nothing is hard anymore because I know what hard is like. I live in a world without you. That is hard. Nothing else, that I do, even compares to that. I look back. Shit! Rissy is bent over, trying to breathe. “Rissy! OMG. Are you o.k. Crap! I’m a bad boss! I should not have taken you inferno hiking!” I am scared now. “What if you have heat stroke! Let’s get you down to this part and I will turn around, go back up the mountain, down the other side to my car and come and pick you up!” “O.k.” she said. She got down, safely. I texted Rita who was flipping out. “Our intern is blacking out! You made her puke!” SSSSSHHHHIIITTTT!!! I haul ass down the mountain as fast as I can, to rescue  Rissy. I got to her about 20 minutes later. She looked much better. “I threw up. Want a apple carmel sucker?” she said. “I feel awful! But yes, a apple carmel sucker will make everything better. Are you alright?” I asked. She was. Thank Ro for that. I didn’t kill my little intern. My board would have NEVER forgiven me for that one! Our itty bitty is PRICELESS to us!! She was a good sport about the whole thing, but I don’t think she will be going back into the inferno, anytime soon. I am just truly glad that she is o.k.!

My Rissy is getting ready to go on her mission trip, to Wales in just about a week with her Young Life group. She blows my mind. She is 20 years old and is already making such a difference in this world. I know what I was doing at 20 and it was not going on mission trips and working my butt off for a children’s cancer foundation, for free. Her mission team still needs about 9,000 dollars. I know that I have my issues/anger with many things in this life, but I will ALWAYS support Rissy’s beliefs and what it is she is doing, because it is her heart and soul that I love. Her heart and soul that I don’t judge. Our spiritual beliefs/differences are something I embrace, as I know we are both opened minded enough to listen and learn from each other. I have taken the time to get to know this sweet little soul and I am so proud of her and so thankful that I can support her in whatever way she needs support. I have heard through the grapevine that due to some of my “anger issues,” that some people cannot support me. To each their own. But if you cannot support me, then maybe you can open back up your hearts and your wallets (hee hee) to support Rissy and her Young Life groups mission trip. I know even the smallest donation would be greatly appreciated by your God, so very much. I plan on making my own donation to help Rissy reach her goal. I know this would make my Ro, very happy.

Here’s the info to help Fund Risssy’s, The best intern ever, mission trip: Checks can be mailed to: Scottsdale Bible Church Marissa Rahm 7601 E. Shea Blvd. Scottsdale, AZ 85260 Please specify that you are donating to the Wales College Group The money being raised will go towards the following: Partnering with Young Life to host a camp for students. Provide labor, including cleaning, clearing tress, maintain “man- made” ponds, build picnic tables/chairs; outreach/evangelism. The link for Young Life is also below. http://www.younglife.org/us Love you, Rissy girl. I will always support you in life, whenever you need it. Unless you become a stripper;) Then it’s game over.

Ro baby. This is all for tonight. I’m wiped from the day. I have so much more to say as the thoughts about you and all of this are never-ending tonight. I’ll save them for a later date. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll. xoxo

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