Week 27 February 7-13

Or should I say WEAK 27? Seriously! How much can one person take?! I can usually remember a chemo week (bc everything is in "cancer calendar memories" these days) by one specific moment-what Grayson's super craving was that week, his mood at clinic, a new found goofy behavior, introduction or waiting for reactions of a new drug-SOMETHING! One thing usually triggers a memory of a specific week of the past 27 but this week did me in.

The list is unbelievable and extremely negative...but please, read on if you are in the mood for doom and gloom bc that is all this is. It is all I can feel right now. This is what week 27 brought to me. I don't even have a title for this post other than Week 27 bc that is all that comes to mind when I think of the past 6 days. Simply Week 27.



I am not sure if these ramblings will make any sense...I am just typing away.

• Remember "Pukey Monday"? Well, that ended on Wednesday for me! And NO I am not pregnant! A yucky stomach virus put me at home for 3 days. All the while worrying (and moping like a zombie with a headache so bad slime was about to erupt from my ears) who else may get it (praying it would be anyone else but G). How nice of me to wish that on my children and husband right? And you know how it is...Moms still have to be moms. I snuck a few naps in but things still needed to be done. Meals, laundry, Triston's homework, fill in the blanks.


• My motherinlaw's surgery went well but left us with a diagnosis we were not expecting. We are still trying to accept it and deal with it. Things have been pretty quiet around here. The surprise and pain are just not necessary for anyone and yet we have to manage through it somehow. More unknowns, more fears. When is enough, enough? Honestly!


• With our emotions feeling uprooted and unprotected we still had to go on with our everyday. But I don't know what our everyday is anymore. Just when I think we have a grasp on a "normal" week, routine, anything-it is shredded to pieces by something more upsetting.


• On Thursday, I was told my uncle passed away. I hadnt thought of him in years. Memories, questions and guilt set in. My feelings are none compared to what my parents have to face in the upcoming weeks. He had been my father's bff since age 5. But I was flooded with memories of many good times. He was the one who ventured out to open a restaurant with and only with the approval and assistance of my parents. Before long the place became a family business without it ever intending to. That little Italian place brought out skills every one of my family members we did not know we had. My mother became a restaurant manager-a fantastic one at that! My father a brotherly sidekick and manager of the bar and anything else that needed mending. My brothers were bus boys and handymen. I got my first waitress gig. Had it not been "family owned" I never would have attempted it. I didn't think I would be good enough. I loved it! I really was a great waitress!! It came so natural to me. Sometimes I miss it. It really was a good time. We rocked that place. And the people that became part of our lives then (even the oddballs) are memorable, right Robin?! Vita Bella will always have a tiny place in my memory file box.


• I am tired of being told that this Leukemia path will turn us for the better someday. Because you know what-until then I am miserable. Yes, you have read how I see the positive in each of my days here. And I always will. Each morning I question what the day brings but promise myself to hold onto a happy thought to take to bed with me. I will not stop doing that. But leading up to that moment is alot of fear and disgust for my life. I absolutely hate what this and all of the added crapola has done to me and my family. I really don't know who I am anymore.


• Here is what I do know, as recently discovered this past week. I am old. No, really, I am. I went from feeling like this energetic mother of 3 for ONLY 5 days, to weak, numb woman. I feel aged across every square inch of my body. Drained of life. I wouldn't even know where purchase the right sized battery for this limp being. Do the kids keep me going? OF COURSE they do. I have to keep going for them. But when people tell me I have to do for myself-ha, I don't even know where to begin. The only thing I have done for myself is indulge in my chocolate and junk food cravings and the weight shows. Why else do I feel old? Bc lately the people I have had the easiest time connecting with are those in their 50s, 60s and even older. Woman who have experience similar struggles in thier lifetime. Lifetime! I NOW can relate my past 6 mos to what other women learned in many years. Okay, you could say-well now you are ahead of the game. A peek into the future. But why in hell do the men in my life have to pay the price for some early life lesson?! Or is it simply my maturity that allows me to relate to these women? They too are suffering the cursed cancer lifestyle. I am grateful I have these women to go to. Here we are crying over loss. Loss of self. Loss of independence. Loss of control. All due to medical curses. Talking of the unfortunate reality that loss of anything precious to you (be it a person or a piece of yourself) changes you. You never see life the same way. A wicked lesson. The truth that you life changes in a split second with one phone call or words muttered off a doctor's lips. Nothing is ever the same. But for god sakes I am 32 years old. What did I do to deserve this? We share those fears but it still baffles me about the age range. I find it harder and harder to return to my old conversations. Of kiddos, and dinner plans, the latest restaurants, family outings. I don't do those things anymore. And before you say BUT YOU COULD, it just isnt that easy. Not just anyone will care for a 2 yr old with a needle and tube hanging from his chest. His list of precautions and dos and donts would scare off many people. It is not Grayson that is scary, it is his condition. And I understand that and respect it. But knowing that makes our lives too limited in so many ways.


• And then because of the connections I have made with these woman and their burdens, I ache for them too. I want to help them. I know I have enough on my plate but I choose to "pay it forward" whenever possible. And so this week I made a point to and it made me feel good inside. It meant squeezing out that last bit of energy I have before bedtime to put it together but I did it. I had to. I have cried too much this week for their pain as well.


• Wednesday night Triston and I tried Awanas. My friend Najette had suggested it to us and we decided to give it a try. She truly understands how we struggle to give Triston normalcy and a sense of control in this crazy life of ours. Picture a religious version of boy scouts. I felt he needed something of his own and the night time period worked well for our schedule. It happened to be Mom night so I was able to stick around. I was very impressed by the push for values, character ed and religion. A mini version of CCD. I was sold. T was placed in the 5-7 yr old group with friend Aidan. Now it did not click with me how much earlier this program had started until I saw how many songs the group knew. They turn no one away so it was no big deal for T to join this late in the school year. It ends in April. T tried his best to imitate the motions. I could tell he was uncomfortable but he pushed on. I gave him a thumbs up. Then we played some team building games in the gym. Boy! Just that opportunity for him to run and be a boy lit up my heart. He was really having fun! He was given a book with religious verses and stories to recall for the following week. If he recalled the materials and shared the comprehension questions with his "teacher" he would earn points toward his vest and other trinkets. That made him feel pretty cool. But then the clatter hit. The group was instructed to get their gifts they made the week prior for their moms. I told T to stay back with me bc we did not know about "the club" when they made those projects. He tried to hold back the tears and could no longer. It hit him! All the things he caught onto missing out on up until this date became too much. He was able to dismiss them in the moments but not now. He wanted to see what they made and cried to me, "I want to make something for you, mom". Then it just poured out-"I don't know the songs. I don't know that boys name" and on and on. He sat in my lap and cried into my shoulder. He wanted to go home. I lost it. I that moment I didn't care that I didn't know anyone either. I just held my boy and cried with him. I told him I was sorry and that I just wanted him to have fun and try something new. I realized I was crying so hard I wasn't just crying for him ,but everything else that blew at me up until that day AND it was ONLY Wednesday! We agreed to go and see what the group had made. We walked across the hall. It was ornaments they painted. He wanted one to give me so bad. He kept repeating he just wanted to give me something. I told him he was. That he does everyday. With his hugs, smiles,etc. But it wasnt enough. He knew he had missed pieces to this new puzzle place and it hurt. I hurt him by bringing us there. I really had a hard time breathing at this point. I knew people were staring at us. I did not care. Here I was trying to give to him and it blew up in both our faces. We agreed to go home. As we walked through one room to get our coats he noticed lemonade and cupcakes. He asked for one. I told him of course he could. Then my sweet boy was sure to grab one for me. We ate them with dry tears, sitting in the group room. We pulled ourselves together and enjoyed our snack. After we made it back to the car I asked him if he had fun. He said a little. I asked if he wanted to go back. He told me he didnt think so. In that short drive home I convinced myself we were NOT going back. I wanted to protect him from those feelings again. I felt so miserable. But, as I talked with Charito about it later and shared the moments he did have fun and attempt to meet new kids I realized I needed to change my decision. As much as I don't want him to feel that way again, it was also important to us for him to see that it is OK not to know everything. That perfectionistic, answers come easy quality in him needed to be chiseled away at a bit. Charito and I knew that from our own experiences. That evening he and I discovered how often we had avoided events, places, people bc of those insecurities and we did not want that for T. Just bc we were afraid to fail and NOT be good at something did not mean we wanted the same outcomes for him. T needed to try it one more time. It was only fair, to both of us. Believe me, it wasn't easy for me to see that or ultimately agree to it even though it was blatantly obvious what needed to be done. I struggle with that. Great timing huh? On top of everything else, this is the age in which T is entering big boyhood and somehow we are teaching each other of insecurities and trial and errro. T and I ended that evening reading that verses and one of the stories. He loved it! I told him how proud I was of him trying a new place that night. We talked about how it made us sad, too. But I also told him we were going back next week. That everytime we try something again and again it does get easier. We shall see how it goes. Just another example of how emotionally painful motherhood is at times. You wanna protect all you can and other things get in your way.


• By Friday night Triston was throwing up and diarrhea. His pukey bug lasted the same as mine. How nice of me to pass that lovely gift onto him! He was well enough to attend the Monster Truck Jam with daddy and my bro n sis n Ayden today. I prayed he would at least be well enough to enjoy something!

I really was slammed with some type of yuck each day this week. The kind of yuck that pulls you like quick sand and you wonder when someone is coming to yank you out. Heavy. That is how I felt. A heavy weight making me weaker by the day.

But like I said, I find the happies in the days, too. Some days it is easier than others. Some days it is simply if I made it home safe and sound and without any Grayson injuries to fret about! Here were the happies I came across this week. Week 27 def had the doom and gloom but I will NOT forget these moments:

• I now call those happy, frozen moments in time (described above)- "fairies". It is those moments when you mentally freeze for a split second to remember it just the way it is before it disappears. Grayson and I had one Thursday night. He was cuddling in bed with me and he pointed over to my bedside lamp. He said, "Look, mommy! See them! See them everywhere!" I looked over my shoulder and I saw that he was referring to the dust particles seen in the light. I told him I saw it and asked him what it was. He replied, "Tinkerbell and fairies." It was such a magical, yet innocent response. His fairy moment created my fairy moment. Moments of magic I NEED to remember.


• Triston hasn't had much time to play in the snow, so I let him be free during the walk from the car to the house afterschool. Those are his daily moments to fashion that snow angel he's been eager to make. It has become part of our daily routine now. But on Tuesday, he was too adorable. He stays on the lawn while I unload his backpack and watch him from the porch. As I looked up he was stomping around in what seemed to be circles. Whatever. But then he exclaims ," I made you a heart, mommmy. Just for you!" , and there it was. He fancied a heart in the snow with his footprints. What a way to melt his mam's heart!


• Friday night G and I were cuddling again. We had just finished reading books with T. G started chatting away about the book and everything else on his mind. Then he got serious. He looked up at me and put his hand on my cheek. Then he said in the most adorable whisper, "Mommy, you a princess." I immediately hugged and kissed him! I asked him if I was a princess then what are you. He looks at me with a duh kinda look and says, "Sushi!". Well, of course! How could I forget! He then proceeded to remind me that Triston is my eggroll and Caden my rice. I thought that was the end of the conversation. But he added one more-daddy. He was really thinking about it. "And daddy, uh, uh...noodles!" I bust out laughing. Go where you want with that you perverted minds you, but I was just impressed it was still in the Asian realm of things. Hilarious. Now G tells T this little speech each day like he's tutoring him!


• And let's not forget Caden. His accomplishments for the week include getting a cold, eating like a pig, been holding his bottle for a few wks now and now SO CLOSE to sitting independently. He is lasting longer and longer as each day passes. His adoration for T continues but it is just as comical to watch G play big bro. He talks baby-ese to him and dictates to me what he needs. But I think it is funny that as involved as G is, he will NOT pick up anything Caden drops/throws on the floor. He won't touch it at all. He tells someone else to pick it up. And if Caden needs it back NOW, G demands you get it fast, "Hurry, hurry Caden need now!".

The boys continue to bring the good out in me. I dont know how else to see it. And as for work and the ridiculous report cards and paperwork, it is just a place I show up to in order to get paid.Insurance is crucial. I literally put in the barest amount of energy and nothing more. I only have so much to give daily. If you get more out of me it is bc I was feeling a bit perky. Kudos to you on that day! Take what you can get.