Tuesday, August 7, 2018

Just life.

I don't really know what happened the past 8 months?

Well, I do. And I'll get into all of that in a minute. So much happened actually that it felt overwhelming to keep typing it out, but I have regrets about that. There are many feelings that I should have typed "in the moment" and I didn't, but this school year that starts in 2 weeks is a new sort of year - things are different and I want to make sure that the closing of the first half of 2018 is documented.

Kirk died February 17th.



Most things after that seemed very trite. Posting about silly adventures in parenthood seemed so very ridiculous when now my very best friend was doing it without her husband.

But I need to go back now and fill in some blanks.

At the end of January, we went to Hollywood Vibe dance comp with our *then* studio (hold on, I'll get to it).


It is our *then* studio because promptly 2 days after that competition, both Brittany and I and our children were removed from the team. I want to say that I was surprised, but it was a long time coming. I had spent over a year wanting something from a team that did not have the ability to give it to my children. I thought things would change: I thought dances would begin to catch up with other studios, I thought there'd be some splitting of talent within age groups, I thought I'd see Aidan get better.... But honestly, everything had been at a stand still for so many years that it was just like ::sigh:: for everything we did. Eventually, I voiced it. I was unhappy with the concept for end of year show, unhappy that I had pushback, eye rolls, and disappointment every time we did something outside of the studio to advance further than we were able to there, and I was most unhappy with how my children felt. And I felt guilty for making them power through when, especially Sawyer, wanted to quit every single time she was at the studio. We were planning on leaving after the last competition and when that piece of information took wind, they wanted to be the ones to kick us out. I am un-regretfully not friends with 90% of the people I had spent years with - but thats how it goes when people feel the need to lie. The stories I heard are those of middle schoolers - not adults - and if you know me, I am honest to a fault. But I understand the need for others to have some sort of self preservation, even when they need to make up stories to fit their needs. It's the way people work, sometimes. So there you go. I had mean things said to my kids, about my kids, around my kids and it is done.

The difference in my kids in just a few months at our new studio is actually incredible. This is the growth that I had been looking for. During the spring semester, while at a new dance place, Aidan went to several other competitions on her own as an independent. She won multiple scholarships, was called out for her dancing in many classes, and all of the weight was lifted off. She was happy, she was self motivated, and so that was that. Sawyer is on all-star cheer now at a local gym (youth level 1) and so our fall will be alternating between dance, cheer, back to one or the other, etc. Aidan is on our new studio's team - as well as Miller. Both have solos next year (Aidan 2, Miller 1, but also a duo with Allison).

Aidan's IG follows her dance life more than I can post here, honestly - aidkaid_dancer.













Miller turned 6, I went to Florida again with EJ for his work yearly weekend away, and we trekked through the rest of the month as best as we all could. The same is said for March, I suppose. School was school, same old events that I normally would have overly documented. But as I said, it seemed so very "is this really important to take my camera to?" and I just didn't. I took phone pics sometimes, but *in the moment* became very literal. But as I do, I tried my best to keep up with every day moments.









By April, I began looking for other schools for Sawyer. She was simply unhappy at her school. I want to be clear that it had nothing to do with her amazing teachers and administrators. Every adult that came into contact with her was nothing short of life changing. Yet, Sawyer needed something else. I pulled her in May and she went to a micro school for the rest of the semester and we are homeschooling next year. Yes, you heard that right. I have prepped to homeschool her for years. It has weighed on my heart forever and now it is time. On Tuesday/Thursday, she is going to a performing arts school for a co-op (5 classes a day) that is simply dance/art/acting, etc. and she'll be able to do all the things she loves there. PLUS she has cheer team - so its working out beautifully on letting Sawyer be Sawyer.




Reese has had MRIs. I have posted about them on her Gingerfight FB page, but to reiterate, everything has been fantastic. We are coming up on two years on the dabrafenib (tafinlar) BRAF v600e tumor mutation inhibitor. It is still doing it's job. She is also going to be changing schools for next year - she'll be going with Miller to her school and repeating 2nd grade. I am not doing that for "catching up" necessarily, though another year in 2nd will be good for understanding some basics that she may have missed, but mostly for social. The break between 2nd and 3rd grade girls is astounding - and Reese isn't there yet. Also, having her best friend Miller be only a grade behind her is going to be fantastic for the rest of her life. She is so so very excited to be at her new school, but we are both sad about leaving the previous school. Her previous elementary knew her in and out. They knew how she ticked, how she laughed, what made her happy or sad. I am anxious to deal with that at a new school, but I am fully prepared to do what I need to do to make that happen. I have emails prepared for when we find out our new teacher, plans for prepping everyone, and will figure each hill out as we arrive to them.





End of school came and went. Before school let out, we had a combo Reese/Allison birthday party, hit up the pool and then, summer started. Aidan, Miller, and Corbin (yes C still is dancing!) were in the recital for our new studio and it was beautiful. We started summer classes, but then headed to Florida for our 2 week summer adventure. 









I posted a lot on IG while we were there and took only a few big camera pics. But we headed to Blue Skies for the second year in a row, first. It was, as I knew it would be, magic. I drove the kids from Dallas to Biloxi, first, then from there we headed to "The Forgotten Coast" of Florida - which essentially means "beaches to ourselves, thank heavens". We laughed, we danced, we rollerbladed down the halls of our condo. We worshipped together and made new lifelong friends... and then we had to leave. That meant we cried. I always cry. You can't NOT cry when leaving people who become so involved in your every day moments for a week. 




We left that part of Florida and drove to Orlando for dance nationals for Aidan. She didn't take her solo, but we were just there for convention for her and fun for the rest of us. Again, this was all on IG because I just didn't take my camera everywhere. EJ flew in to us in Orlando and spent the week there and so that was extra special. We went to an amusement park, hit up Disney springs, ate bad mexican food, found shells and kept a pet starfish. All of the driving, all of the meltdowns, all of the tears was worth every second of being together for these 2 weeks of fun.









We got back and spent at least a week trying to get into the groove of life. We had EJ's birthday, Sawyer turned 10, dance intensive and now it is today. Today we have solos and duos practice for dance kids, Sawyer has her cheer private, Corbin is at school (and yes, she still has one more year of preschool). 



Life has changed in many ways, but the world keeps moving. We have less than 2 weeks until school starts and it seems as if we just started summer. Drama from last year feels as if it was years ago - and that is the oddest feeling to me. I start this year with a middle schooler, a homeschooled 5th grader, a repeating 2nd grader, a 1st grader, and my baby who is in her last year of preschool. It is a different part of life that I only imagined I would be at, years ago.

One thing I didn't mention here yet is that we are in the process of being licensed to foster. I have waited years for it to be the "right time" and now seems to be it. The girls are so excited. Just... so excited. They ask all of the time if we are almost done with training and when a little one is going to be staying with us. They have helped sort baby clothes and get rooms organized with joy in their eyes.

Reese cries sometimes about Kirk. He is very much always with her. She cries when she eats ChickFilA and says that she is sad Kirk won't be coming to lunch with her next year. She will be in bed and just come out and say "I just miss Kirk" with tears in her eyes. I say this only to remind you how important you may be to someone else and you don't even know it. Look around you and think about the influence you are making on someone's life. The unintentional impact by just being you.

I am sorry and also not sorry about the break in posting. I can't let it happen again, but my life needed a slight moment of silence to realize the importance of prioritization on the things that matter. I have known it all along, living a life with a kid with a brain tumor, but needed a pausing breath here.




Friday, December 29, 2017

i have a best friend.

I have this best friend. I don't really know what to say except that she's the counterpart to the weirdest parts of my brain. I go into the deepest places of the oddest parts of the internet and there she is laughing with me. Her husband, Kirk, has stage 4 colon cancer.

Let me explain something. A little over a year ago, Brittany was taking care of her grandfather who had colon cancer. He lived with them, she took care of everything - and this wasn't even the first time she has done that. Brittany's job, for years, is to take care of an adult low functioning autistic 23 year old. She knows that family bc she took care of BOTH of that girl's parents who died of different types of cancer. Brittany is a professional in the absolutely worst department - death.

Kirk and Reese have a bond. They are "porties". He goes to lunch with her - brings her favorite. Chick-fil-a nuggets, fries, and a diet coke. They laugh, take pictures, the school office says nothing of this odd couple arrangement of BFFs that shows up on Kirk's off-chemo weeks.



Diagnosed in January of this year, there was so much hope. Surgery, chemo.... but that chemo didn't work. Parts of my heart were broken and dissapated into heartbreak as the protocols trucked on, but Kirk's multiple tumors didn't cooperate. Conversely, Reese's tumors shrunk as Kirk's became uncontrollable.

Jan 8 is the start of a trial. The last scan says what everyone knew - things have grown, metastatic spread to the liver and other body parts has been something that has been looming over everyone's head since he was diagnosed. The trial will be hard, as far as organizationally, and I will be there to help in the ways that I can. I will sit at your house, I will make you dinner, I will do laundry to the best of my ability (to your standards, B haha), and I will take their daughter, Miller's BFF, every night, if needed. It is one of the things I love to do most.


<3 nbsp="" p=""> Dear Kirk,

You. You are the most amazing and brave human that I currently know. That is saying something since I have a daughter with a brain tumor. There is something to be said about pediatric cancers, though - they have a will and way that is untainted by life. Being brave to a child isn't the same as the stressors as being brave for an adult and that makes this journey 100x harder than I ever would have wanted for you.

You. You are the best father and husband that someone could have - because I know that you worry, you care, you stress. But I need you to understand that no matter what happens, I am the people. I am here. With tears in my eyes, streaming down my face, I want to tell you that I am here and I won't ever be anywhere else except here. I am here to rally your family. I am here to get your wife out of bed. I am here to take your children to school and cry in the car if need be. I am here. I am here to drink Mich Ultra on the patio you built and to find hilarious colorectal cancer cards on Etsy to make you laugh. I want you, most of all, to breathe easy that I am here for whatever life throws at your wife. She is my other half. My person. The other person on the planet that understands the oddest things I can think.

I love you stoma "ch",

amanda. 

Tuesday, November 7, 2017

That feeling.

I wanted to write a 5 year post dx blog last week. Then I didn't. Then I wanted to for sure do it this wkend. Then I didn't. And so I am trying to sit down now and finally put words with the way I feel. It is interesting bc I feel both removed and also covered in the same sort of feelings.

5 years ago seems like a lifetime. When I think about the things that we've done since then, where we've been, who I have known, who I have lost, who I have kept, and who I have gotten rid of... the places we've been - the vacations and road trips. The time we have spent at soccer or dance or girl scouts...



...I *almost* forget about the years that we lived in the hospital. The once a month stint of days pumping chemo into my 2, 3, 4 year old. The 2 weeks after that when Reese inevitably got a fever with a zero ANC and had to stay in the hospital for a few more days. The passing around of children between me, EJ, my parents, friends so we could get to where we needed to be without leaving Reese ever alone.




I almost forget about the bad coffee inpatient, the fear of eating the hospital sushi, the runs down to the cafeteria at 10pm while R slept so I could finally eat for the day. I almost forget about how I would watch Everybody Loves Raymond, then Friends, then King of Queens on TV every night that I spent Children's because it was my timeline of how late it was while I watched Reese finally close her eyes after a stressful day.

I almost forget about her encephalitis while I was 38 weeks pregnant with corbin - or her sepsis a few months later.



I almost forget about Reese not walking. At all. The years she didn't walk. The amazing granny walker that she finally used to get everywhere as opposed to scooting that I still have in my garage is some of my favorite times in our journey. Bald Reese, puff head Reese, spike hair Reese, bob hair Reese, and now she needs regular haircuts.



Now we wake up and take meds, get ready for school, and send her off for a day on her own with the most amazing teachers around. She goes to parties with her friends, she does her homework, she takes care of her sisters... but she prefers to still sleep with me. She still fits on my chest in my arm nook the exact same way that it did when I would rub my face on her hairless scalp. She gets bigger, but apparently that space does, too.

I don't know if I really have anything poignant to say except that I haven't blogged first day of school pics, didn't write about our trip for our 10 year anniversary to vegas, haven't put down all of the amazing photos of daily life that I usually do and it makes me feel sort of stressed inside. I have to get better at that again. Kids getting older seems to be the goal when you're in the thick of toddlerhood for so many at one time - but older kids brings so many more time consuming events. I have been really trying to savor the hour (lol) at night that I get alone-ish. I am trying to let go, catch up on tv, drink some wine and chat with friends...

Regardless, I will catch up on those things I have put into a folder to post eventually. Corbin is home from school because she hasn't been feeling well, Miller was home last week for the same germs. Aidan has a broken wrist and thinks she broke the thumb that is already in a cast, but I tried to wrap it last night and apparently made it hurt worse. Sawyer lost her mind this morning because I had the wrong fruit bars for breakfast. Reese was mad bc the rest of the kids wouldn't wake up quickly enough and she had been coloring at the kitchen table since about 5:45am.

5 years ago, I was hoping to see today with Reese. I was praying that I'd have a fight over her hair and whether or not she needed a jacket. My next 5 years will be full of different types of worry, but for now her meds are working well and so, like I usually do, I will relish in that feeling and wait 2 more months for the next scans.

Reese's FB page: www.facebook.com/gingerfight
Instagram: www.instagram.com/theskelteseven