A Little Therapy and A Chinese Fire Drill


 

 

Ro baby. 10:30 p.m. and we are home. Safe. Tired?? Yes. Tired, but not really. You know how it goes here. Busy day, to say the least. Busy and full of distractions. I think I am going to crash and burn soon. Hopefully, not until after this little Fashion Show that has been so crazy busy. And I am more of the behind the scenes person. I have no idea how Katie has been running a business, organizing all of this, getting ready for her upcoming trip to China, etc…… She is a freaking tornado! We make a good team though. And those busy little bees of mine! Thank you for all of them as well! They are really getting things done. It’s amazing to see the passion and love that flows out of them. Plus they are ALL so SPICY! I love that so much. It makes me laugh. I have the best group of spicy girls surrounding me and “getting shit done!” Productive is an understatement. They are powerhouses!

Today. What in the world happened, today? Woke up. So tired from not sleeping the night before. Ran the boys to school, 10 minutes late. Whoops. Told Super Nate’s mom I would come to PCH to check in on them. They have been there for way too long and I have meant to get over to see them. They finally got to go home today. They were so happy about that. I poked my head in Nate’s room to find him playing on the couch with his mama. I brought him some little toys and a couple of Star Wars things. I tried not to get too teary eyed when I rubbed his bald head. It made me miss yours, so much. I talked with Beth for a while. We went over some things as I am trying to figure out the best way to help them out. I wish I could do everything but I mostly wish I could wave my magic purple wand and make this all go away for them. Since I cannot, I will do whatever else I can. Even if it is just something as little as helping them out to their car with their luggage and helping Nate buckle into his car seat. He is so sweet, Ro. And he loves Star Wars, just like you. It felt good being there today and helping out in any way I can. I know I don’t know his mama very well, but I feel like I do. Because I’ve walked in her shoes and I know how lonely it is. I know you are watching over them though. I know they are going to be fine in NYC when Nate goes in November for his surgery. But I still told her to just say the word and I would help with NYC any way I can. I mean that too. No questions asked. I am more than happy to be able to help them<3 You would be proud. You would love them. You would have been buddies with Nate. He gave me knuckles today, just like you loved to do. It made me smile.

While I was at PCH, I met up with a couple of our lovies. I spent some time with my new friend, Kathy. The Emily Center was named after her daughter, who passed away from Leukemia, many years ago. As you can imagine, we have become fast friends. She is another one of those Spicy women. They seem to be surrounding me now, Ro. I know you have something to do with that. Kathy has been volunteering at PCH for a very long time. She is starting to test out the new idea I am trying to put in place at PCH for a volunteer position. Kathy tried it out on Tuesday and seemed to be thrilled with the way it went. I loved watching the way her eyes lit up and sparkled as she talked about what she did and the way the families reacted. She said it was hard, painful, happy, sad, and exhilarating. She said she experienced about every emotion doing what she did and it was so amazingly beautiful. I sat back, listened, smiled, laughed and cried. She is such a little firework. I am honored to call her my friend.

After I left Kathy, I ran over to the clinic to see Sandra and Mia. I saw our Sharon. Love our Sharon. Mia was there to have her blood levels checked. Mia was having an off day. She was upset, sad, mad, and hurting. Once again, where is my fucking magic wand when I need it? For both her and Sandra. They so deserve a break. I just happened to have a tiny doll in my purse that stopped Mia’s tears for a few minutes. Poor baby. Poor Mama. Stupid Cancer. I wanted to whisk them both away. Off to some tropical island, where Cancer does not exist and where you would be waiting for us. I wanted to give my friend, Sandra a break today and tell her to take the day off, and I would take care of Mia while she went and did something for herself, which I know she NEVER does. But she so deserves to. She is going to Sedona this weekend, which made me so happy to hear. I hope it is peaceful for her and she is able to breathe just a bit.

I stayed with them for a little over an hour. I put “Strawberry Shortcake,” on my computer for Mia. I asked if “A,” was around. She was. I have not seen her since your service. She came and found me and just hugged me for a really long time. We talked for a few minutes and got caught up. I miss her so much. I know you do too. She misses us too. It’s so funny how many sparkly eyed people seem to be in my life now, Ro. It’s as if once you got sick, somebody just started placing all of these people in our lives. These extra special people, whose eyes twinkle just like yours. “A,” is one of our sparkles, for sure. Same with Dr. Adams. I have not seen her, since before you passed away and I didn’t ask if she was in the clinic today. I don’t know if I could have handled seeing her and “A,” both in one day. That would have been too much, I think. But I think of her often. She is a special lady, too. Very much so.

I got out of PCH around 1. I ran to meet your Daddy for lunch. After that I ran to my eye doctor for a quick appointment and then to meet your Daddy to see Dr. Rachel. I have not been to her, in a while with him. It was good. Good and painful, but I always leave there feeling better than worse; which is a very good thing. That’s all I can ask for, at this point. She is really, really, good at making sure both of what your Daddy and I are feeling, is validated. She is really, really, good at helping me explain how I am feeling and why, when I sometimes seem to be at a loss for words. I sometimes need a little help explaining things to your Daddy. She is really good at helping me do that. Turns out, I cannot do everything on my own. Sometimes I need a little help in trying to figure out this “new normal.”  It is fucking hard and a lot of work that leaves me exhausted, empty, sad and scared. Don’t worry. Not only am I trying to figure out who I am now, but I’ve got to figure out this mom/wife thing again. I still feel so utterly disconnected from them both. The self hate that comes from this, is a nightmare. I hate myself for so many things now and so much of that is the guilt that surrounds me because I have the 3 sweetest men here on earth, who just want to love me. But I am too sad to fully let them all back in. It makes me feel selfish and guilty. Clearly, I am just a bad person, right? Or so, Inferno Fuckwad Bob tells me over and over all day long. I am really starting to hate that asshole.

So, Ro. After Dr. Rachel, off to Katie’s to meet up with Liz and do a little work. After there, pick up your brothers, Luke and Lily. Take all 4 kids to Dr. Jo’s office to the KISS programs. A program for Kids who have lost a sibling. We stayed there for a couple of hours. I chose to stay in the kids room and not go to the parent support group that was going on. N0t such a good idea. It was so painfully hard for me to sit there tonight and talk about you in front of others…. and to listen to the way Luke, Lily, Liam and Quinn talked about you and what happened. Beautifully raw, innocent and painful. I couldn’t hide my tears and it ended up being way more intense that I thought it was going to be. It was good for all of them though. We did some really fun Art projects and I was surprised how easily they all opened up about you. It was pretty amazing to watch, but it really, really hurt as well. Next time, I don’t think I’ll be hanging in the kids group. It is going to be good for your brothers though. It’s a very non-forced environment. It’s more about being a kid. A kid who had something awful happen to them, but it is not going to define them. They are still allowed to be kids, while acknowledging the fact that this horrific thing happened.. but they are young and life will go on. Innocence can still belong to them. It just comes in a wiser form now.

After we left the KISS program, we drove home. I told your brothers and cousins about Chinese Fire Drills. I don’t know where that came from, but I was thinking of you and the memory just popped into my head of me being young and carefree. Your Papa Jim used to let me do them all the time with my friends. Before I knew it, all 5 of us were at a stop sign…. in our neighborhood……. safe of course. No other cars around. I threw the car in park and we all got out, started screaming our heads off and ran around the car.  They all were laughing their heads off and thought it was the best thing ever. I imagined you watching us and giggling away. I miss your giggle so much, Ro.

Luke and Lily are staying the night. We are home. Safe. Tired. I wish you were too. I hope you are. I hate this life without you. But I’ve got to find a way, to make it manageable. The Chinese Fire Drill tonight helped for about 10 seconds. 10 seconds of being without pain, is better than nothing. Miss you baby. Love you baby. I hope you are safe. Sweet dreams, Ro.

xoxo

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8 thoughts on “A Little Therapy and A Chinese Fire Drill

  1. Kristina

    Maya, I’m sorry to keep bombarding your blog, but the parent’s of those children you meet at PCH need to contact Dr. Burzynski. He has been treating incurable cases of cancer successfully. He is an MD and a scientist has an FDA approved drug that has been working miracles without the side effects of chemo and radiation. I know it sounds too good to be true, but they have nothing to lose – they still have their children and the options for them to get better are so limited. I am begging for you to spread the word – I know this will save lives. http://www.burzynskiclinic.com/personalized-treatments.html This is his website. There are many real patient stories there, living 10, 15, and 20 years after their given time. This treatment is only available in Texas, but my god, if it were to save somebody’s child, wouldn’t they go to there?

  2. Linda O'Connell

    OMG!! Chinese fire drills – haven’t done that in years!! Will do at least one this weekend!! Thanks for the reminder that simple things can be great fun!!

  3. Laura

    Wha an eventful day. Lots of good positive progress. So happy you meet up with Kathy Anderson she is one of my favorite people. The minute you met her you feel like you have always known her, such great positive energy. You are really doing such an amazing job, so very proud of you. All my love to your entire family.

  4. Maureen

    oh my! chinese fire drill!! i am so doing that with the family this weekend!
    i still wish i had a magic wand too… i would use it on you.
    peace,
    mo

  5. Glenda

    Maya,

    Looks like a very busy day…
    Thinking of you and Rockstar Ro!
    peace & strength to you, Woody, Liam and Quinn
    hope you have fun at the Taylor Swift concert…and enjoy your weekend
    xo

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