Thank you, Tara from The New York Times. She did a great job and was so thoughtful, kind, and respectful.

 

 

 

http://well.blogs.nytimes.com/2012/09/17/a-childs-cancer-story-inspires-taylor-swift/?smid=fb-share

Meet Dr. JoRo

Dear Lovelies,

I am blessed. In many ways even after all of this. It’s hard for me to remember sometimes, because I have a lot of anger, sadness, guilt, and Inferno Fuckwad Bob that seems to consume me. I try to remember all the things I do have, things that so many people don’t like an amazing husband, my beautiful twins, family, friends, a house, food, and love. And I had the privilege of being Ronan’s mama. This does not make up for losing my Ronan, to Cancer. Living this life without him is Hell. Even with all the blessings I mentioned above. I’m not sure why I’m still here. It would have been so easy to take the easy way out and just end my life. I think about it a lot. But that’s the thing; I think about it. I think about what that would do to the lives of all my blessings above. It would also mean that I didn’t do the job that I promised Ronan I would do. I cannot let him down. I won’t let him down, no matter how hard this life is now.

I spent the first few months after losing Ro, in a hole. We went to the beach to get away from things but the funny thing is, you cannot escape death, no matter how hard you try. Especially when it is your child. I was convinced I was going to die. I don’t know if you can overdose on Ambien… but there were many nights that I could have cared less if I did. I would fall asleep and pray that I never woke up. I’m sure that I will have nights like this, here and there, for the rest of my life, but I hope they become less and less.

I came back to Phoenix, worse off than when I left. I remember just being in a fog. One day, I was in bed. The boys were at school. I remember making a plan about how I was going to end my life. I didn’t care about anyone or anything. I sat with my plan. It was a good one. I had a moment of clarity wash over me and I remember thinking that nobody could help me, that nobody could save me and it clicked that I really didn’t want to die. I thought of Woody. Liam. Quinn. And Ronan. I googled something, because I knew I needed help. Serious help because things were not going well. I have never felt so helpless in my life. Surely someone must be out there, who can help me. I googled a bunch of random stuff about losing a child. In one of my searches, the MISS Foundation popped up. I thought to myself, I think I remember a couple of people talking about the MISS Foundation….. let’s see what kind of bullshit this is. I clicked on it. Dr. Jo’s face popped up. She’s pretty, I thought to myself. I didn’t read a thing about her. I found her email and sent her something that I’m sure didn’t even make much sense. I think I said something like, “My name is Maya Thompson. I’m not sure if I have an appointment with you, because everyone else is running around, trying to save me. My 3-year-old son just died of Cancer. I need help.”

Within a couple of hours, Dr. Jo responded back that I did not have an appointment with her, but she would see me. And that she was so sorry about Ronan.

We arranged a time to meet. I drove out to see her about a week later. I didn’t have much hope, that anyone could help me at this point, but I was willing to take a chance. I don’t really remember much about our time together, except that it was really, really long. I think around 3 hours long. I cried a lot. I’m sure a lot of what I said, didn’t make much sense. She wrote down a lot of notes. I got up, after our session ended and she walked me out to the lobby. I pulled out my credit card. I was expecting to pay a hefty chuck of change. Dr. Jo told me that they didn’t accept payments, that they ran solely off of donations. It took me a minute to process this. I told her I felt awful about leaving there without paying her anything. She just smiled and said that they were a Non-Profit 501 (C)3. I left there feeling so guilty about not paying this lady who just spent 3 hours with me.

I went home and talked to Woody about making a donation to her Foundation. Of course we would he said. I saw Dr. Jo that next week. By the second session with her, I started to have a little hope again. Hope that somebody might actually understand kind of what I am going through. Hope that somebody could actually help me, save myself. I settled into a consistent routine of seeing Dr. Joanne. I started to think that maybe, I wasn’t really crazy. I started to think that maybe, I was just a mom who had just lost the most precious thing on earth to her and all the acts of “insanity,” were justifiable. Dr. Jo accepted me and was one of few people in my life who trusted me from the beginning. She was able to explain things to me, that nobody else could. She had the research to back it up. But the thing that I loved the most, is that she took me, broken, shattered me… and slowly started to put me back together. She knows I will never be whole again. But she believes in me and the love that I have for Ronan. She never tells me things like, “Please don’t do anything crazy.” “It’s time to get over this.” “You have other children, you have to live for them.”

She yells with anger for me when I can’t. She tells me that this is the most fucked up thing on earth, losing a child. That there is NO reason for it. She tells me she knows I wish it would have been me that died, therefore she does too. She is real. She is honest. She is unbelievably smart. She is soulful. She is kind. She is tortured. She is deep. She is funny. She is humble. She is saving my life. I’m not exaggerating when I say that. If not for her, that little plan of mine may have happened. She is not Dr. Cacciatore anymore. You know the funny thing is, she never really was. I had the urge to call her Dr. Jo from the beginning. You’ll love this. The JoRo nickname that I gave her…. well she texted me the other day to tell me that her middle name is Rose. Joanne Rose. Jo Ro. Are you fucking kidding me. Talk about a sign. A sign from Ronan. I know it was him that led me to her. I know this from the deepest part of my soul. He knew she was going to be the one to help me. She is the one helping me. She is the one, saving me by helping me save myself. Here is a little more about Dr. Jo, below……
Dr. Joanne Cacciatore is the founder of the MISS Foundation and she is currently a professor at Arizona State University. Her area of expertise is traumatic death, specifically child death, and she is an acclaimed public speaker on this topic.

Dr. Cacciatore also specializes in counseling those affected by traumatic death and she is a Diplomate in the American Psychotherapy Association. Her therapeutic interventions include Mindfulness Cognitive Behavioral Therapy, Narrative Therapy, Dialectical Behavioral Therapy, Logotherapy, and various other therapies, such as Repeated Exposure Therapy, to manage Post-Traumatic Stress Disorder (PTSD).

As an advocate of “green” mental health care after a traumatic experience, she is a member of the American Psychotherapy Association, the Association for Contemplative Mind in Higher Education, the International Society for Traumatic Stress Studies, and the National Center for Crisis Management. She spearheaded and directs the graduate Certificate in Trauma and Bereavement program at ASU.

Her research has been published in peer reviewed journals such as The Lancet, Birth, Death Studies, Omega Journal of Death and Dying, Social Work, Social Work and Healthcare, and Families in Society.

Dr. Cacciatore received her Doctorate from the University of Nebraska-Lincoln and her Masters degree and Bachelor’s degree in psychology from Arizona State University. Her work has been featured in major media sources such as People and Newsweek magazines, the New York Times, Boston Globe, CNN, National Public Radio, and the Los Angeles Times.

She received the prestigious Hon Kachina Award in 2007.

Her greatest accomplishment, however, is that she is a mother to five children, now mostly grown. She notes “four who walk and one who soars”.

On a personal note, she has been a vegetarian since 1976 and enjoys barefoot hiking, reading, surfing, and rock climbing.

Her life changed profoundly in 1994 when her daughter, Cheyenne, died.

Here is where you all come in. The MISS Foundation is growing rapidly. Which is sad because it means kids die. Yup. I know first hand. They do, it can happen to anyone of you(although I pray to RO that it never does), and it’s time that people start to stop hiding it like a dirty little secret. They die. Parents need help to get through this. Nobody should be expected to survive this on their own, the way Dr. Jo was. The MISS Foundation, understands this, like nobody else. Dr. Jo understands this, like nobody else. The MISS Foundation, needs help from a lot of you lovely blog readers, who so desprately want to help me. You can help me, by helping Dr. Jo. Kathy Sandler, the Director of MISS sent me a list of all the ways they need help. See below.

Board and or Task Force Needs:

  • Bankers/Investment Professionals – with contacts in the financial community and know individuals who are looking for a meaningful place to put their donation dollars
    • Also to help design a MISS Foundation Endowment Program
  • Business/Corporate – leaders in the community who are also well connected in the community and wish to link their business in mission driven causes
  • Fundraising/Development – individuals who have experience in fundraising and can help with devising our fundraising plan on either short term basis, or someone for the Board who would be willing to lead the Fund Development Committee and manage this
  • Government or legislative official – for board and task force who can help with all of our legislative initiatives
  • Healthcare & Hospital Executives (Either Administration or Dr/Nurse) – would be able to facilitate formal collaborative care relationships so that MISS would be reimbursed for the referrals received from these institutions
  • Insurance Professionals/Executives – to facilitate relationships with Insurance companies in order to provide grief/bereavement support as a standard
  • Marketing/Public Relations Professionals – individuals for board & task force and also individuals to help on a day to day basis with social marketing, press releases, overall marketing and branding
  • Philanthropists – socially conscious individuals who would again
  • IT – individual connected in the technology community
  • Volunteers – need a Receptionist/Exec Assistant 5 days a week – 8am – 4pm
Kathy Sandler, MSW
Executive Director
MISS Foundation
office: 602-279-MISS (6477)
Thank you, lovelies, for anything you can do. If you are looking to start working on making yourself a better person, because you feel like something is missing…. I can guarantee this is a great start. This is something that I believe in with my heart in soul. I know Ronan does too.
Sweet dreams. Love you all.
xoxo
Dr. JoRo. LOVE.LOVE.LOVE.

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz

It will always be Maya and Woody or Woody and Maya

My feelings have been getting hurt a lot over things lately. Things that normally wouldn’t bother me, but they do now. I’ve been struggling with all of these new feelings and have felt guilty  thinking I was being selfish and mean for having them. I now know that these feelings are normal because of what we are going through. I found a guideline today while reading the online handbook. It made me feel as if maybe I am not losing my mind. If anything, I am more in tune with what is the appropriate way to act when handling our situation. Most people do it with such grace and ease…. some not so much. I wish I was more “guy like” and could just brush certain things off. I’m not that way at all. I sit and think about things too much and it is a waste of time and energy. I’ve got to let some things go and spend time on things that are important to me now. I can’t be dealing with other B.S. That’s all I’m saying about that because as I said before, it’s not worth my time and energy. I know what is true and what is not.

Today, I got a call from one of our nurses, “A.” Yes, that is really what she is called. Her real name is something else, but she has been called just “A,” ever since she was about 4 years old. She called to tell me they have set up Ronan’s scans. His first one will be this Thursday and his second one will be next Thursday. My stomach dropped just hearing that they are set up. I know I have been waiting for this but I feel like the not knowing part is almost easier at this point. It’s like I am in a protective bubble and when those scan results come back, it’s going to pop. We are hoping that the results will show that the shrinkage of his tumor  is about 20-25%. We are praying and praying hard. What we are doing has to be working. Ronan will have to be put under with anesthesia both days. I hate that part but I know Dr. Maze will take good care of my little seal. He won’t let anything happen to him so that makes me worry a little less.

Tonight, Woody and I were able to get out for a few hours. We went to meet our friends, Kenny and Stacy Frakes for dinner. As we were walking to AZ88, holding hands… I closed my eyes for just a second, took a deep breath, and pretended that we were on one of our normal weekly dates that we used to have and that none of this was happening to us. It was just Maya and Woody and nothing else mattered or existed. For those 10 seconds, I felt such bliss and happiness. I felt connected with my husband and it felt really good. We met our friends, who we have not been out with on a double date with in a good 5 years. Which is so sad. Another one of those times in your life where you get too busy and always say you are going to meet up and never do. What a waste of years without good company. Kenny and Stacy are the kind of friends where 5 years can go by without seeing them and then 5 years later you meet up and pick right back up where you left off. Woody and I had the best time with them tonight. We got to act like a couple again and enjoy being out with our friends. We talked about everything from Ronan to Bob Dylan. Tonight was an absolute joy in every way. I also love that Kenny and Stacy are not the kind of friends who run away and disappear after something like this happens. If anything, it made them want to see us more because they truly care and love us. We knew them before were married, and have always held them close to our hearts. I am so glad Ken got in touch with Woody and we set something up. It was so healthy for us to do something like that. I actually saw Woody enjoying himself tonight. I have not seen that side of him in 7 weeks. It was beautiful, refreshing, and made me all warm and fuzzy inside. We need to take time to do things like that more often. I was not ready before… but I feel like I am now. Woody and I are the foundation of our family. We have to love, cherish, and take time for each other. We are going to try harder to work on that. This won’t break us or our family.