aidan. sawyer. reese. miller. corbin.

Just life.

2018-08-07T10:58:00.000-05:00

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.

i have a best friend.

2017-12-29T21:56:00.002-06:00

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.

That feeling.

2017-11-07T08:59:00.001-06:00

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

Onward, summer.

2017-07-21T10:31:00.000-05:00

I've been doing a lot of my posting on instagram lately because it is easy - but that is lazy because it really has no words... unless you count that a photo is worth 1000 words and then in that case, I am a novel writer.

Reese's last MRI was awesome. I consider awesome meaning that we are continuing her meds bc the MRI saw stability and a little bit of shrinkage (maybe). Awesome has different meanings as you go through a diagnosis, etc. Sometimes just being able to be status quo is definitely awesome.

This summer has flown by and we are already heading our way out of July soon. In June we went to Blue Skies in FL - which was like our lighthouse trips, more or less, but different. It was such a woooonnnderrrffullll time. EJ had to work and couldn't get out of it bc it was a go live week - so I asked samantha (and avery. and AJ. our BFFs from our colorado trip last year) to apply also and we traveled as one big family in the huge van :)

They always ask, when you're at these retreats, "why did you want to come here?" and I usually answer the same way - I spend my entire life really *not* around cancer parents. It isn't on purpose, per say, but I don't go out of my way to make friends that I regularly see that are cancer parents. I have a group of friends that "get it" without having to experience it. Maybe if we were younger or more immature or if my friends were less about wanting to learn things about reese - I would need that, but I don't. My friends are such a blessing because they listen and just want to *know* and don't judge a dang situation or thing.

But.

Once a year, I do enjoy the "ugh right?!" and the "no one understands that!" and the "what protocols and chemo do you do?" and "i know! that is so frustrating!" with cancer parents. Even then, part of the time I feel as if we are the ones with a terrible start - the 6w stay, the surgeries, the DI and the hydro, the closest to "a few more days and she could have died". And that is countered with "only" having to take pills. She *only* has to have her port accessed once a month. She is almost 5 years further away from who she was before.

Also, I have a sort of exhaustion for saying that I am at a point where I feel like our every day is relatively normal. It isn't a jaded exhaustion - it may be more of a blessed sigh of relief sense of it. But I just feel almost guilty for being where we are today to where I just don't see a need in talking about it.

But the beach... the ocean... it is where our hearts want to live every second of the day. They asked if anyone wanted to be baptized in the ocean one of the days - and I knew aidan would say she wanted to. She had asked to at our church, but I knew it just wasn't time. In the ocean - that is where you remember where you said, in front of everyone, what you believe. They played on the sandbar with the big kid friends, they sat at the coastline and made sand castles. They napped on the beach covered in shady towels. I walk away from the beach as if it has renewed us, every time.

So far the rest of the summer has been at the pool, dance, and sleeping in. RMC still go to school on tues/thurs in the summer so I get to take the big kids out for nails or the movies or whatever on those days.

Our next adventure is a road trip west. Exploring with my family and friends is one of my top favorite things to do. Even in the moment when you think "why did I take 5 children to this?" the memories looking back only hold the magical times. I am blessed that is how my mind seems to sift things later. lol.

Well, onward to the rest of the summer. More rosy cheeks and tan lines. More pool hair and tangles. More laughing and crying for snacks. More us.

annie.

2017-06-10T20:35:00.002-05:00

I don't know if I can adequately explain how it feels to be able to see all 5 of your children on stage in one night. Beyond that, one as the LEAD of the show. I am so beyond blessed to have the dance family that I do. I remember years ago, putting Aidan into dance and being like "well, here goes" and saying yes to being on the competitive team. I have made friends of a lifetime and so have my children.

I know it is like mid june and I should write a ton about the end of school, also, but this post is just to show off my dancers ;) This post is to brag on the magic that I felt watching all my little ones do what they love to do.

So congratulations my sweet babies... another year past and another year has already started. I took all of these pics on tech/dress rehearsal night so I could sit back and be the proud mama I was during both of the actual shows. Your boldness and determination makes my heart swell every time I see these photos.

Early May.

2017-05-10T11:42:00.000-05:00

Turns out - while I was trying not to think about what reese would possibly look like when she was older, while she was sitting a hospital bed years ago, she would end up looking just like herself only slightly (slightly) bigger. lol.

Only now, almost 4 years after we had to pull so many of her teeth because of chemo, reese is getting a front tooth in.

I almost cannot handle it. When she talks, that little white nub peeks out and I get all weak in the knees thinking of how long it has been since I have seen a tooth in that vampire smile.

Age 7 is old. Like, it isn't a baby or a toddler. It isn't a preschooler or someone entering school and beginning a journey.. it's a kid. A kid who is going to be in 2nd grade. A kid who is trying to manage learning and social skills, learning math and choosing things to do during recess. A kid who is just happy to get a front tooth.

Reese's favorite things on earth are going to dinner (pizza or mexican) and hanging with her family. We were going to do a party, but she wanted OTB and bowling with the fam and so thats what we shall do.

She sleeps with me any time EJ is out of town. She sneaks you by saying "can we have cuddle time?" and of course you say yes, but she means IN YOUR BED TONIGHT WITH YOU RIGHT ON TOP OF YOU?! and still... the answer is yes ;)

She writes/draws/colors all the time. She wants very badly to be better at sounding out words to write them and so thats what we work on at home. She likes to write people notes or make books for Foxy.

Foxy is still her BFF. That being said, watching her with her girlfriends at school is such a treat. They are all so silly and fun and Reese is just so happy to have little jokes with everyone.

Reese also has a "family" with Foxy. She will say "wanna be in my family? because in Foxy's family, you never have to do dishes or laundry and you can drink wine and take a nap" (sounds amazing, right? lol). She tells us all the fun things her family does (that family also has troublesome "little boys" that don't even deserve names hahaha). Her imagination is just so fantastic. I could listen to the stories she tells for hours.

...and sometimes I do when she wakes up and wants to chat when I am heading to bed haha.

Her favorite colors are orange and pink. She wants to play soccer again in the fall if possible. She is going to join brownies with her friends. She likes wearing joggers with pockets best. All 3 of her laylees/blankies are different and she can tell which is which by feeling them between her fingers.

When she gets riled up about something she "can't calm down!!" because she's such an emotional soul. Her happiness all of life is paralleled to how she can get her feelings hurt, too. I will gladly take the cuddle after, though.

She doesn't wear her boot much anymore. She seems to have learned to pick her foot up more so when she is running - not that the rubber doesn't get caught and trip her sometimes, but we will see. She is having so much fun wearing different types of shoes and thats a small milestone, too.

I am desperately counting down to the end of the school year for my elementary kiddos. It.Is.Time.

I don't want to make anyone's lunch anymore (even though at this point, it is just Reese's, usually - and then M and C's 2 days a week). I don't want to wake up at 6am anymore. I don't want to sit in a parking lot waiting for kids anymore. I want it to be summer where we wake up, leisurely eat, go to the gym and then swim. I want to come home and eat lunch and take naps and then go to dance. Then I want to stay up late and do it all over again.

The rest of the year, in the next 2-3 weeks, we have field day, school talent show, more dance company try outs, picture day for recital, then all of the recital things - including recital memorial day weekend.

To see Aidan as Annie, and then the rest of the brood throughout the show in like 10 other dances (lol), is going to be damn magic. They have all worked so hard and to see it come to life is just going to be such a proud moment as a mom.

STAAR testing is done, GT classes are done next week, all the things are done except for actual school, though. Which is making me want to crawl into a hole lol

I am going to go think about how this baby here, turned into that big girl. Right before my eyes.

Dear Reese,

I love you. I love you every second of the day. You teach me patience and kindness and how to love in any sort of situation. Thank you for being you, for teaching everyone around you that life is something to treasure and to make every day a happy one. Thank you for saying "today is beautiful out!" or reminding me that the sun feels nice. I will never get sick of seeing your face when I pick you up from school - and you jog over to throw a paper in my face and see my pride in your most even basic work. I will never not want to have cuddle time in my bed. I will never be sick of waking up to your sweet voice asking if I "had a good sleep?" or if you can go wake Foxy up. I would keep you home from school everyday just to hang out, if I could (honestly, I would do that with all your sisters, but alas). Thank you for all the years of that gummy vampire smile - and thank you for the years to come with those goofy front teeth. I love you.

Love, Mommy.

fixed.

2017-04-24T10:50:00.000-05:00

sort of.

So my custom domain is not linking correctly even though I own it all, but my blog is - so while its been literally like 4 months (cry. seriously cry), the only way I can update really quickly is with some photos first. I have been doing 365 since Jan 1 and it really changes the way I look at some days.

At the end of January, I posted on Reese's FB page that her tumor was smaller. The meds were working, the tumor shrunk, and onward we went. Tuesday is another MRI. Reese has said to me 100 times "are you so ready for Tuesday, mommy??" because she is so excited to go. I am hoping she has some sort of premonition that its going to be a great day.

If you have followed at all on IG (www.instagram.com/theskelteseven), then you'd know we've been filled with dance competitions, filled with Annie for recital at the end of May, filled with school projects and productions... We went to galveston with our very best friends, took bluebonnet pics, cried, laughed, had girl fights between sisters, went out to dinners downtown, played on bikes, and everything else in between.

beach pics below... :D

This is the first time in a while that I feel like "I am so busy right now" and then at the same time I don't know if I have done anything except take kids to places they need to go (haha). This weekend Reese and I went to the Texas Children's Cancer Fund gala again - this year, reese was a survivor/alum. She wore the *poof*iest dress (her favorite donut dress from her birthday last year), she got her hair, make up, and nails done with Miss Texas, danced with me for half the night. These are the moments... these are the times that seem like just another fun thing to do, but that she talks about for days later. Then, when she sees another pic, she'll relive it all over again.

I will have more epic posts soon. That aren't all pics and catching up and things. Another school year is coming to a close soon and that is just mind-boggling to me. I don't know how I can have a 5th grader - let alone a 4th, 2nd, and Kindergartener, too.

So for today, prayers for a wonderful MRI would be lovely. The rest of the week is dance, a model call for A and M, more dance, talent show tryouts for A and S, school pics and an easter party for M and C, soccer practice, PT for A's foot that is in a boot, trying to make homemade dinners every night (thats my goal for the week), one last ISD meeting on friday, and editing. Always that, too.

and now it is 2017.

2017-01-17T11:42:00.000-06:00

This is exactly what I didn't want to do - have months of catch up, months fly by with nothing to say, but I guess this is also the exact situation I want to be in... a boring normal life.

I started 2017 with one goal: to say no. I want to do things that I feel is enriching us all as a family. I want to sit at home and read books instead of finding a sitter to hang out with friends. I want to eat at home more, use the time we have leisurely instead of rushing everyone to bed. I like when A and S get home at night and I let them freely spend the rest of their evening just chatting instead of having to do a ton of work. I am saying yes to photography that I really want to do, I am saying yes to sitting on my couch with best friends and wine, I am saying yes to people who I see as actually adding value to my life. But I have spent years and years "knowing everyone" and realized recently that everyone does not know me how I would like friends to actually know me. So far it is working out seamlessly. I actually have date nights with friends and their kids - and get to see my kids light up WITH me. It really is such a joy.

I have always had this "fear of missing out" gene in my body. Or a guilt that people will be like "where's amanda" but it isn't even necessary lol How narcissistic to think that, honestly. No one cares and that is okay. And the ones who DO care, understand. I am still spending time with friends that I adore, but its just on the best terms ever.

Reese started her Dabrafenib and we are almost at 3 months taking it now, morning and night. She has no side effects really - maybe the weird skin on her feet and fingers, but that is it. Her MRI is in 2 weeks and I am honestly excited to see it. She feels good, looks good. I am hoping for miracles.

Holidays came and went, of course. Thanksgiving, Christmas, family and fun. The pictures will tell the stories in itself. EJ was home all break and so we really got to spend a lot of quality time hanging out and just being lazy together. We had the CCBD christmas party, performed at "home for the holidays" in downtown mckinney, and then, all of a sudden, Aidan turned 10 and Corbin turned 3. And all my babies became official preschool age and it was beautiful and heartbreaking at the same time. Our family, as a whole, is growing up. A child in double digits seems insane to me. Just as insane as it is to not have a baby to tote around. How did we get here so quickly.

Aidan and Sawyer had two separate dance conventions and competitions. While dance takes up a lot of time, seeing their eyes light up, the smiles on their faces, everything, when they are on stage, makes it all worth it. They truly love it and that to me makes it easy to drive them around everywhere lol The studio is doing "Annie" this year as the spring recital/production and Aidan gets to be Annie --- and I will likely melt into a pride induced puddle on the floor when I see it the first time. She works so hard and it is going to be an amazing spring.

I also started a 365 for this year and it has been seriously amazing for me. I wanted to pick up my camera more and now with starting a Facebook page about it, everyone is joining me and it seriously is such a huge motivation. Years ago, when I did a 365 for a few years in a row, I realized that there was beauty in the monotonous. I have spent years, now, finding beauty in the busy. But now that we are somewhat boring again (lol), it has been so wonderful to document such normal things. Most people know that lifestyle photography is where my heart lies - but it does so, first, at my own home.

Here are my first 16 days, plus some in december. Which you can follow along with these (and others) on instagram, of course.

another year passes.

2016-11-02T08:42:00.002-06:00

In 2012 we went to scare on the square.

I was excited that all the girls were dressed in their super hero costumes, but reese was still so sick. She had been to the ER, they said she had UTIs, I was not very content in that answer, but I am not a doctor, so I guess I was wrong. She slept all the time. I barely got her awake to put on her costume. Her right arm ("bad arm") had been not working for months. Doctors sort of gave us lame answers - like saying she broke it (even had an x-ray!) and putting it in a cast. Maybe radial nerve? Maybe should get an MRI? but she had been throwing up so much that we could never get her sedated. I find it ridiculous that none of these things added up for any medical professional, but it wasn't in our time - it was in someone else's hands.

Downtown, I know now, that people saw her eyes act strangely, then, but didn't know how to tell me. It doesn't matter, of course, because when EJ saw her eye float later, they went to the ER... again... to finally get a CT scan.

Thus began the worst days of my life.

Everyone stepped up: friends, family, strangers. We were instantly surrounded by doctors and nurses and sanitizer and fear, but also by love and prayers and warmth from all over the world.

When we got there, she was actively dying in a way... as she had been for days. Her heart rate was somewhere in the 30's and 40's. She was barely responsive. The fluid in her brain was so much, but even that day she would have times of totally "okay", so as a parent it seemed insane to think it was so bad inside.

...but now we are 4 years later.

She had to get another haircut the other day bc it was getting so long and needed to be evened out. This year, the girls were "decades" and we went to scare on the square to dance the night away with our very best friends.

We are oddly in a same type of waiting space as we have been before. Only, this time, instead of wondering what we are working with, if she will need more surgery, asking naive questions about chemo, checking to see if her body will handle her own pituitary functions... we are just waiting on a new medicine to be (hopefully!) approved while we go to dance, have dress up days at school, laugh at the dinner table, cuddle at nighttime.

4 years is a lifetime. I look back on what we've done in 4 years and am so grateful to have so many friends be by our side along the way. Here's to many more halloweens filled with dancing and laughter and love.

the end of "ish".

2016-10-26T15:45:00.000-05:00

December 2014, I felt the weight of the world, again, when we were told that Reese needed to be back on chemo. We had been off babyPOG for like 7-8 months, taken her port out, and finally gotten into the groove of being "normal" again. I knew, though, going into the December 2014 MRI that something was wrong. I saw things that I, after finding out we'd get a new port and start vinblastine, never saw again. Signs that gave me grace to just needing to know that I was right, even if it was not the news anyone wants to hear.

After that MRI, though, things never felt as heavy going into each scan. We spent each one watching her tumor change, but not necessarily *bad*, but just different. Small growth here, shrinkage there. It was stable "ish" and I was totally okay with that. She isn't symptomatic day to day so just hanging out in this zone was fine by us. The thing about scans is that you have to compare to previous scans further back than the last one - and they compared to the October 2015 scan yesterday. Basically we are done with vinblastine. I knew already, though, that it was coming. I braced myself for yesterday's change and was almost excited about our new path when I left. I didn't want to hear 15% growth in the past year (which is relative, I guess, until I have actual images to show you), but we worked really hard 2012-2014 to get to where we were when we started vinblastine - and I definitely would not want to lose ground on it now.

Summer 2015, we did the FoundationOne genetic profiling on pieces of Reese's tumor from 2012 surgeries. That's when we found out that her tumor cells have the BRAF v600e mutation. There are specific inhibitors for that mutation and one of them is called Dabrafenib. It is a pill 2x a day. There's no taking Reese out of school for chemo, no labs every week. There really aren't a lot of side effects that I have read while being an internet oncologist (lol) - and the side effects that do exist are totally manageable. As I told the doctors, we've been practicing swallowing pills for months for this change. I just didn't know when we'd actually need the talent.

Having a plan in place stopped me from having tears, forbade me from even feeling sorry for myself. We are 4 years into Reese's journey, but I am decades from the emotions that I used to feel most of the time. There's so much more action in my thoughts than there is sadness or fear. I can't quite explain to you where a mom of a brain tumor child's mind goes when things are quiet or when a scan or treatment plan is up in the air. It's morbid, really. Have you ever thought to yourself "what would she wear if she died?" or "would I sleep with her foxy if she wasn't here anymore?" and those thoughts compound every fear and sadness that exists when you're waiting for what's next. It isn't as if I don't think about those things in the depths of my nighttime heart or that I don't feel sick waiting for results, but it is a different beast when you can conceptualize what your child will do next.

Today I will have excitement for things to come with this drug that is matched to her specific tumor. And with plans come more plans... and just in case plans. and years later plans. and safety net plans. But for me, soon, we will live pill to pill, scan to scan and I pray that the weight that I have shed, on my shoulders for so long, continues to feel lighter and lighter. There are amazing results out there for this drug and I hope to see Reese among those statistics.

IG: www.instagram.com/theskelteseven

another october.

2016-10-24T19:30:00.001-05:00

I received the best compliment the other day. "Your kids are all so different and you let each one of them be who they are..."

I like to think that I do that, but to hear it from someone else just made my heart swell. I have had Reese's ARD and parent teacher conferences these past few days and it really never gets old hearing how awesome your kids are. No matter the accommodations made, test scores that fluctuate, whatever it may be - they make me proud by being good friends, hard workers, and letting their nerdy/sassy/silly freak flags fly.

Tomorrow Reese has another MRI. We have been on vinblastine for something like 95? weeks. I don't know, but this will be like the 7th MRI just on this protocol alone. I always sort of secretly laugh when someone says that they opted out of a CT or MRI for their kid's big fall or what not because of "possible radiation!!!" and here Reese will be, again tomorrow, sitting in that MRI for 2 hours - but don't worry, she has been counting down for a week at least. She still loves "going to bubblegum" so much and honestly just can't believe that its MRI *and* taco tuesday tomorrow. Best day ever, she said. I agree. Or rather, I will agree when we get stable results.

On the house front, I am pretty settled overall. We are slowly hanging things on the wall, getting new prints, still purging things that I thought I may want to keep, but actually don't. I need to get a porch set of some sort so I can sit outside and drink my coffee as the fall rolls in and blows all the leaves off of my trees for EJ to rake... (lol). and more rugs... I always need more rugs. so link me those!

As always, prayers loved and wanted wished for.

IG: www.instagram.com/theskelteseven

time passes.

2016-10-17T20:22:00.001-05:00

I really can't believe that it is October. and also that I haven't blogged here since July. This is the first time (and last time) in years that this has happened and it's almost because there's not much to report.

But then again, here I am sitting in my new house because we moved, after sending my kids to school to a new year that I didn't post about, and coming up on yet another MRI. We went to Colorado on an amazing trip with friends, we had a dance convention in Oklahoma, and the tiny details in between are a laundry list long because, well, a lot can happen in 3 months... I wish I had written it all down here, though.

Live and learn.

Reese is feeling awesome. First grade is amazing and she is learning so much and seemingly catching on a bit quicker than last year. We are in somewhere of 95 or so weeks of vinblastine... no real side effects at all and it seems so surreal that we've been on this journey for almost 4 years. Reese graduated from PT at school today (officially friday when she has her yearly ARD). The therapist remind me what the goals of her first ARD was.... "to get off of a chair on her own". ha. She couldn't even walk... but now, graduating. She still has OT and speech and adaptive PE if needed, but overall, there's nothing more they need to do on their end.

Aidan and Sawyer are both on dance company and in 4th/3rd grade. Aidan's favorite things are her GT classes. Sawyer's would be math, I think. and wherever she can socialize. They both went to Oklahoma for dance and rocked my socks off with their smiles and talent. Aidan was a scholarship finalist for her age group and she was so proud of herself.

Miller and Corbin are both in gymnastics preschool and loving it. 2 days a week I actually have time alone - which, by the way, I hadn't had since Aidan was born. I have had a baby at home with me every single time I sent another off to preschool, but not this time. It was a strange thing at first, but I seem to fill the days with everything that I forget otherwise and by the time it is pick up, I feel as if time has flown.

Aidan, Sawyer, Reese and I drove to Colorado (trail west) for a retreat with our wonderful friends Samantha, Avery, and AJ. The pictures should sum it up nicely, but it was just a great time in the outdoors appreciating all that God had made. We jeeped, we zip lined, we rode horses, we sang songs and played games. We laughed a lot and ate a lot and overall just had a smiley good time.

While I was in Colorado, putzing during nap time on the internet, I sent EJ a link to a house. Long story short: he looked, he liked, we sold to a friend wanting our floor plan, we bought, we moved, we are here. We have only been living here a week and it is seriously a dream come true. I loved my old house, but we bought historic this time and it has so much character and life inside. The kids are just in love as well - which makes it that much better. I am like 85% put together on the inside of this new place and so that keeps me at peace.

I guess this is more of an informational post... I need to post the pics and get out of here and work on things I really want to say for my next post. MRI a week from tomorrow.

IG: theskelteseven

what it wants.

2016-07-26T20:10:00.000-05:00

MRI was supposed to be today. Because of a water leak that somehow spread to the MRI bays, we were moved to tomorrow morning at 7:30am. ::yawn:: I was up early on Monday because we had to go in first thing for the test that decided whether Reese could stay off of daily cortisol.

She has taken cortisol since she entered the hospital in 2012. So, 3x a day, I would give her the dose to avoid a potential adrenal crisis. For MRIs or surgeries, they'd stress dose her, but then slowly things changed. We never upped her dose, no matter her weight/growth, we stopped stress dosing for MRIs, and I went ahead and fought for her to be weaned. It was an emotional process, really. I cried wondering if I was doing the right thing, didn't know if I should go to another endocrine office for a second opinion, I searched the internet for other kids that might have weaned after being on a replacement dose for so long. Finally, her endo agreed to taper. We weaned from January to June... slowly... and then we stopped. I almost tried to go back, at the end of the school year, thinking "maybe she is more tired. maybe I made a mistake." but I pressed on and things totally were fine and, yet again, Reese proved that her body does what it wants to.

This is the second time that endocrine has said "well, that doesn't really happen" and it did. She is fully weaned of cortisol. Reminiscent of when we stopped with the ddavp for the DI, back in the day (over 3 years off of that now), I was amazed at what our bodies, what Reese, can do. So now she only takes her daily synthroid, and really, we will see if she even needs that soon. Surreal, really.

We are heading into month 20 on vinblastine - a protocol that was supposed to be a year, but has held us stable for so long throughout. MRIs are different now. I do not have the same sick feelings that I did before. Instead of fearing that we wouldn't get shrinkage, I simply am curious as to how "stable" we are. Her MRIs read, in more scientific terms, "a little less here, a little more there, overall stable". and it is almost as if a weight was lifted off. I can't really explain it, but only to say that as time goes on, I realize that it will do what it wants and we will adjust the course as needed, with many plans ahead of us. I don't mean to say I have become unemotional to the process, because I certainly have not. I still get sweaty palms the second they walk into the room to tell me about the results, but the pre-MRI vomiting has subsided. Not being able to eat for days before is behind me most of the time. I hope people read this as hopeful, I guess. You don't become jaded, but just simply understand that you are not in control of what is going to happen. You are simply informed of what has happened and then can adjust your course.

This summer has been really amazing and has flown by. I can't believe that next week will be August and soon I will have a 4th, 3rd, and 1st grader. This time last year, I would cry at the thought of Reese in school all day, but now she is counting down to her new class, to see her friends... the other day she carried around a picture from her christmas party last year and showed anyone who would listen "these are my friends" and would name them all. We have been to the pool countless times, we play out in the sprinklers and slip n slide, we go to dance, we get ice cream just because it's hot... It's perfect. Each girl has their place in the day, their chores, the things they help each other with regularly, the sister pairs that play certain games with each other while other sisters run off to do something else.

Each day seems to crawl by, but quickly, a new week begins and I am left with the memories that we've made. Summer 2016 is a win.

www.instagram.com/theskelteseven
www.facebook.com/gingerfight

june.

2016-06-22T14:10:00.001-05:00

It's hot. Most of the month has been spent in water. The girls are happiest in water - lake, pool, ocean, whatever. They want to be with the sun and the splash.

This is just a pic post :) All photos taken with my p&s (not my big dslr).

before school ends.

2016-06-01T19:29:00.001-05:00

Last August, I pleaded in prayer, with anticipation, with excitement, and with fear... I wrote an open letter to Reese's potential teachers and classmates to simply get out my emotions.

This year has superseded any expectations I may have had.

I asked you to be patient. And you were, you so were. You waited on Reese to answer questions, you gave her time to think. You helped her recall that piece of information that was back there somewhere - and if she couldn't you guided her toward the answer as seamlessly as you could. You watched her squeal with excitement when she understood something and immediately conjured up a plan to aide her with what she didn't. She never felt rushed or as if anyone was frustrated with her. She took her time to learn and you gave her that time without hesitation. You are so patient.

I asked you to be safe. No one outside of our family is seen as a safer place than her teachers and friends at school. They are who she lists that she loves, they are who she trusts when I make decisions that may change that day's schedule. No one was ever threatening to Reese and she learned each rule and regulation of the classroom with nothing but smiles and hugs. You let her cuddle you each time that she asked - and I do know that sometimes she knew right when you might have needed it. You gave her jobs when she felt aimless, you gave her strength when she looked defeated. The trust she has does not falter - and along with that comes so much love.

I asked you to be kind. I could not have written a better end to a kindergarten story than the friends that Reese has made. No one saw her "bad arm" as a problem. No one cared about her teeth being gone - except that they wish that they had lost theirs, too. When Reese was gone for chemo at first, they worried - truly worried. Her friends get emotional when Reese is hurt. The kindness shown by 5 and 6 year olds outshines most adults that I know. They defended, they hugged, they cheered every.single small victory. They pushed her hair out of her face when it brushed over her eyes. They wrote her notes of love. Her friends think her AFO boots are cool and that her having a resource teacher for some pull-outs is jealousy worthy, for sure. She was never left out, lest another friend set them straight. She is wanted and needed and loved and she feels every bit of that.

I asked you to be diligent. I slightly chuckled at myself when I re-read this one as within the first weeks of school, I asked them to be LESS diligent since I was getting numerous calls because everyone wanted to keep me in the loop. She figured out the bathroom in no time and her playground aide was gone quickly. They even built a ramp for Reese to walk onto the playground with because the step was very large. Every detail was taken care of. If she was falling behind, we re-organized her services. If goals were passed, I got calls about adjusting those. The care taken for this year was so supremely planned that I was able to sit at home with my coffee and laptop and feel nothing but overwhelming peace.

I asked you to be you. And wow, did I get some amazing people in our lives. YOU were what made Reese succeed. YOU were what made her love school. YOU were who knew what to do in all situations because you are so wonderful at your job. Every day was a blessing to Reese and I hope that you learned just as much from her. She doesn't fully understand that next year means such big changes, but some of her friends will hopefully follow her to the next classroom adventure. Every new person she will meet will be trusted because YOU are handing her to them. I apologize if that seems overwhelming, but I don't think it will be a problem as I have seen the people she has met at this school. I have walked the halls with Reese Skelte and it is nothing short of a small celeb with high fives and hugs and waves. How did she get so lucky...

My 3 elementary aged kids know that they are so special to one another. Seeing each other at lunch, in the halls, wherever always brought a story home. "I saw Aidan today!!!" was worth hearing a thousand times. "Sawyer was in the library!!" was information I may have known, but still loved having repeated by an excited 5 year old.

Kindergarten was something I could not even picture happening 3 years ago. I couldn't imagine how this would even look like. I didn't want to even go there out of fear of "what if..." But now, every morning, we jam out to dance music, unload the huge van, and shake our booties while we give kisses before they cross to the school. Tomorrow is the last day of the year and I will likely cry for the opposite reasons that I did last August. How amazingly bittersweet.

eta: last day of school pics!!

and now to compare beginning of the year on the left - and end of year on the right!!

Reese is 6.

2016-05-13T07:58:00.000-05:00

I officially cried when the entire car started singing "Call Me Maybe". This is all I wish for my children - laughter and love and silliness and wonder.

I blew up balloons until my chest hurt. I found the tape and unwrapped the streamers and decorated the ceiling of the van. I could picture what her face would look like when she saw it - and I was 100% spot on.

This donut dress was the best surprise of the celebration - so perfect, so her. She looked fancy and free and her friends swooned which made Reese beam with pride.

We rode around town picking up friends, singing, dancing, tossing balloons. We went to the donut shop and had a total "yes day" for Reese and her friends. Chocolate milk, kolaches, extra donuts... anything you ask for is a YES.

I watched her friends help Reese with her dress, I smiled as they gave us to her as they walked by, I melted at their gentle touch when just playing with her hair.

I blasted music and rolled down the windows as we sang Katy Perry's birthday song and rolled up to the school. They stepped out and walked into the school on a giggly sugar high. I collected my tears and memories and went home so full of happiness.

...and so did Reese.

Happy Birthday, Reesey. My quiet newborn. My sleeper and cuddler from day one. Your sneaky faces from the beginning of life and big eyes of wonder. You teach us how to love and live and make every day the best. You remind us to slow down and stop for a hug because, sometimes, that's all we need. You bring a smile to anyone's bad day, but you also have a temper that relates to that red hair. You're silly. You're demanding. You're smart and you work hard. You are thoughtful. You are the other half of "the troublemakers!!!!" with Miller and also Corbin's best friend. You are Aidan's sweet angel and Sawyer's fun cohort. My middle baby... I love you.

happy mother's day.

2016-05-08T16:49:00.001-05:00

Happy Mother's Day.

To the mom who got showered with breakfast in bed and gifts from all of her lovelies. Enjoy your spread, I know how much you deserve it. I hope you love everything you received.

To the mom who got hugs and kisses from her child with no father to take them to the store to pick something out. I bet that hug was exactly what you needed to feel appreciated. You are doing everything right. Look in their eyes and see their love.

To the mom who cried all night because she isn't able to hear the words from her own child. I am sorry and nothing I can say can take away that pain. You show us all grace when we don't know what we can do, but you are so loved. We are all here to support you.

To the mom who loves and takes care of other people's children because, right now, they cannot do it themselves. I see your broken heart when they leave, I see your posts about how much you love these children that are not your own. You are making such a difference in every life you pass.

To the mom whose child isn't born, but will come soon - even with no concrete date. I am sure it is exhausting to wait for something you want so badly, but I hope it will happen at the perfect time for you.

To the mom who wishes she could call her own mom, but hasn't been able to for years. I can't imagine how that must hurt and I am sorry. She helped you be the mother you are today and would be so proud of who you have become.

To the mom that is a cheerleader at all games and events. Thanks for caring about what your children are up to. Your child hears your voice and that goal was for you.

To the mom who works at all hours just to survive and make a life for their child they never had, missing so many things their child is involved in. What a wonderful role model you are for your children - they are lucky to have you working so hard for them. They will teach their children the same.

To the mom who is at the hospital with their child today, crying in a chair because they had to hold their sweet one down for another medical procedure. Do not feel guilty - you show that child strength. They are not mad at you. You are doing everything right.

To the mom who is a nurse working to make sure other people are able to see their own loved ones. Thank you for everything you do. Your selflessness is appreciated, even when it seems like no one sees your heroic efforts.

To the mom who cries in the kitchen because she lost her temper again. Every minute is a chance to start the day over. If tonight you're in the same place, tomorrow is a new day. No one will remember the little things you are worried about, they remember the love and the laughter.

To the mom who never loses her temper and seems to have it all together. Well done with your organization and I admire everything you do. Thank you for showing me that some things are just not worth the fight. Your laid-back parenting helps others to remember to relax.

To the mom who has no time because she is working and volunteering every day. You caring about the people around you makes the school, the team, the office, and everyone around you better for it. It is not in vain. You are changing things.

To the mom who stays at home and catches up on her shows. Relax, girl. If you need this time, take it and don't feel guilty for how much more someone else is doing. Grab some wine and take a bath, while you're at it - you still have time before pick up.

To whatever mom you are. Whatever combination, whatever you can add...

I see you. I see you all at the store and at the school. I see you at dance and soccer. I see you acting interested in a story gone too long, I see you forgetting why you were in that aisle. I see you snapping because you said "please be quiet" a hundred too many times before realizing no one was listening. I see your hair, your makeup, your excitement when you are out on a date night.

I want to hug you when your kid is losing his mind, I want to high 5 you when you step over him to finish your shopping. Thank you for showing me what parts of parenting I want to add to my own life.

The coffee that you microwaved again, the dinner you burned, the dryer that you have now run for the fourth time...

Forgetting the milk at the store again, running errands during nap time and having immediate regret, opening up wine at 5pm just to get through cooking...

Whether you count the hours until school is back in session or wake up with a lesson plan for your own, every day...

When it feels as if no one notices your efforts or that you're failing at everything you do- remember that you are so loved, so appreciated, and are doing everything right.

Happy Mother's Day.
Luke 1:37. Nothing is impossible.

Follow our daily antics on IG.

another stable day.

2016-04-29T08:23:00.000-05:00

It took longer to say hi to me this time at clinic after the MRI. This, likely has nothing to do with me and more to do with being busy with, ya know, other people. But it sort of made our hearts palpitate a bit more.

I called EJ and he felt like he needed to leave the office for a bit - which is weird bc he never gets anxious about MRIs. Or, rather, he doesn't tell me that he is. So, this sort of sent me in a nervous spiral until finally they came in and said the sweetest word of STABLE.

Now, our stable is sort of different than other stables, maybe?

Reese's tumor moves all of the time. Sometimes smaller one way, and bigger another. And then the next month will be opposite. Sometimes it will shrink and then fill back in. Sometimes it won't. We look at similar slices every month so we can get see what actually is moving and decide if we want to stay on vinblastine or not. But again, we do. (don't judge size by my terrible outlining down below).

But you can see that generally its not a huge difference - and that we can push time on vinblastine even longer - which is essentially the point for now.

If you remember what her tumor looked like when we first came to the hospital halloween 2012 and also december 2014 when we started this regimen - this is still good.

I get a lot of questions about "well what will you do next?"and that answer is the inhibitor(s) that are used for her BRAF mutation (v600e for my fellow momcologists). That is a daily pill for something like 2 years, assuming that it continues to do it's job for that long.

Next MRI is in 3 months - which is forever away, of course, but when July hits, I will feel as if we were just here.

Follow daily on instagram. and always comment or email w any questions.

massive recap.

2016-04-25T08:06:00.000-05:00

Last night, every move reese made in bed, I watched and wondered. I would flip over to face her when she sighed in her sleep. I sat awake listening and enjoying her breaths. I have no reason that I did any of this except that she has an MRI tomorrow and worry overcomes me at times.

Today I sent her off for her first field trip. She has on her spirit shirt, a sassy skirt, and a set of pigtail floppy buns. I made her a sack lunch and heard her squeal each time we mentioned the big school bus she'll ride on.

I have so many things I need to write out. I did talk about the amazing photography retreat wkend here in town, I haven't talked about the hilarious soccer games that reese has played in, I never blogged bluebonnet pics, Sawyer had a field trip and I got to go and it was so fun just a day with her, she also cut off a ton of her hair and now has a shoulder length bob, we had 2 E.R. trips with fever for Reese, EJs family came into town, aidan had at least 1 dance competition since I last posted - maybe 2. we were sent to great wolf lodge for an amazing night, and, of course, the amazing children's cancer fund gala was this wkend.

So many of these photos are on instagram where they will have to stay because of time. I have spent the past month or more studying for the social studies 7-12th content test (took last week) that I am waiting for a score on. It was hard - and I studied morning and afternoon for so many weeks. I wanted, so many times, to just push it all away and sit and write, but then that would make me stressed out --- but here I am, after, tense because I didn't do it.

The gala ^ oh the gala. In the weeks leading up we have had interviews and videos and been in the paper. Reese's sweet face and story was on the invitation and so many people got to know her. The night of the gala, I dropped her off to a room of fun and set off on a night with EJ. We laughed with friends and ate delicious food and drank copious amounts of wine and then finally it was fashion show time. Reese walked down the runway like a nervous and sweet pro, but then posed her cute little self at the end. She ran down and I got to shower her with kisses... her curled hair, her make up, her dress... it was all so much. What a wonderful evening that I cannot wait to do again next year as alumni.

I don't know if just the entire weekend sort of shook me? or what. But I am just ready to get the MRI over with. Reese, of course, is so excited for "bubblegum" (what she calls the MRI) and I am going to take her lead of confidence.

And I am taking a vow for as close to weekly posts as I can - for myself, I need these times to write and places to put pics and to stop for a minute and just breathe.

soccer.

2016-03-03T10:13:00.001-06:00

The first practice was cold. I ran back to the car to find some earmuffs, but by the time I got back to the field, Reese had already boycotted the rest of the training for a cozy chair with a blanket and a friend.

In days prior to her first soccer practice, I had to find shin guards and shoes that fit w her boot shoved inside. She argued about which pair she liked and then argued about wearing her boot at all.

Soccer.

A right of passage for all kids in north texas, it seems, and one that I didn't know Reese would be able to experience.

She hugged her friends, made new ones, and told me how she really only wants to play in games, not practice (lol).

When Saturday at 1pm came around and her first game was in session, my heart felt like it was going to burst. She had her bright green jersey, matching unicorn soccer socks, hair in a legit ponytail.

I watched as her friends would cheer her on, sometimes pausing to get the hair out of Reese's face with a gentle touch. I see how unconditionally caring children are - and how much they care about their friend, Reesey. I hope one day I can show her through stories and photos how absolutely loved she is.

Hollywood Vibe 2016.

2016-02-04T12:40:00.001-06:00

First competition of the year. First solo for aidan. My proud heart could not get bigger. She may have stumbled a bit on her solo, but she was so strong and learned so much and I can't wait for her next competition in a week.

035 - Lean on-2 from amanda skelte on Vimeo.

things I always say.

2016-01-21T11:29:00.000-06:00

She is so small at night time.

During the day, Reese is a solid 44lbs. The scale at the hospital says 20kg and that is exactly what she feels like. Being only about 39" tall (that's 1%ile, finally), means she often feels as if you're picking up a bowling ball or what I would assume slinging a sack of potatoes would be like.

But at night, her entire face fits in my hand. She can lay on top of me and fall asleep and it feels like nothing. If she sneaks down into our bed, she curls into a tiny ball that seems to match the exact space between my shoulders and hips as I wrap my arms around her.

My face doesn't fit in her tiny hand, though. She cups my face when I talk to her when we're cuddling and the proportions of child and mother are so skewed.

Her MRI is next Tuesday. I have mixed feelings, as being home with the kids all holiday break gave me time to worry about things that aren't necessarily there. More time spent at home means more opportunities to watch her run or open and close bad arm.

She tells me everything from school, now, so "oh, I tripped on a chair holding a bucket" doesn't make me think she's a silly girl who couldn't see because of the bucket, but drives me into a sort of spiral of nervousness.

But, either way, I have a plan. By I, I mean we, by we I mean her doctors. So, tuesday will either make us stay the course or veer towards something else.

I have spent days simply writing this post and I don't know why. I don't know if it's because I am beating the same drum that I always do - and can't think of another way to write it? Or if I just don't want to deal with my own emotions right now? Sigh.

Aidan has her first dance competition of the season this wkend - and her first solo ever. She makes me so proud - even when she wades between hating everything I do and crying that she needs her mommy. Sawyer is rockin' school so much and my heart swells for how much she has grown this year. Miller spends all day doing what she does - being herself and not caring what that means to the rest of the world. She dances in public, wears what she wants... which reminds me of a tiny sawyer and that makes me excited and nervous for the future years. Corbin talks all of the time with adds "me too!!" to anything the other kids are doing. She copies what they say, makes them laugh, and is my daily bff.

There are other things I just want to write down, I guess - like how reese asks me "did you has a good sleep?" when she wakes up in the morning, or that her favorite breakfast food is sugar free popsicles. Or how when we go to chemo, she doesn't even need me around and tells the nurse "you tell my mommy to stop talking?" when I tried to update her on what we're doing.

I am having to remind myself to live in the moment, recently, instead of for bed time. After bed time, I have immediate daily regret and vow to slow down the next day. Some days I succeed. Some days I go up after they are sleeping and curl into someone's bed in hopes they thought the day was better than I did... and that they maybe wake up and see that I am always there.

the one with pictures.

2016-01-18T18:52:00.001-06:00

I need to wrap up so many photos that it is unreal.

So here is the rest of christmas break, aidan's bday party, corbin's turning 2, and new year's eve shenanigans.

december.

2015-12-26T20:49:00.000-06:00

December is such an interesting paradox. We run around finishing buying gifts for people we love, all while filling our cart with things we are also supposed to buy out of commitment. We make plans with family and friends and then stress out when those days come and we are expected to be somewhere at a specific time. We cannot wait until its christmas break and school is out and we can be on no schedule, but then we have no schedule and whole days are spent watching TV or, conversely, running around town finishing errands all day and coming home and having no time left for the fun you thought you were going to have.

This was the first christmas since 2011 that we weren't medically stressed. 2012 we had just gotten home from Reese's second resection and knew that the next chemo we'd start in Jan 2013 *had* to work. We had heard Dec 2012 that if Reese didn't have that surgery "she'd maybe have 2 months..."

December 2013 hit us with some sort of brain infection. Infectious disease called it meningitis, even though R never tested positive. I think it is written down as encephalitis, as well. We got home on the 23rd, gave birth to Corbin on the 26th, and each day for 2 weeks was filled with 24 hour port antibiotics.

2014 was strange. Reese had been off treatment since the April prior, and we had an MRI on Dec 15. That MRI told us that her tumor had grown and we'd be starting chemo again in Jan. There was just a cloud that hung over everything.

Having a medically sensitive child - a child whose life seems to hang in the balance of the next scan or test or anything.... holidays are stressful. There is a huge weight on my shoulders of doing everything perfectly because "what if...". Inevitably that is not how things go. Perfect plans do not pan out the way you think they will - and that is because that's how life is. Every day is full of surprises that kick plans to the curb, but still, most moves that I make require me to decide if this is what I would want to do if something terrible was to happen.

Depressing, right?

But it is not, it is just slightly meticulous. At this point, all of this planning and failing and breathing and reacting and hoping and letting go is a cycle of normalcy for me. I have a tiny badge of appreciation for the holidays and everything that comes with it - because I am honored to have even the stressful moments with this crew of crazy.

The messes in the living room, the make up stained lips and raccoon eye shadowed lids, the crying about being bored, and the begging to not come inside off of the trampoline, it all balances out when Miller says to me "lets have mom and Miller cuddle time" or when Reese says "can I ask you my question?" and it isn't a question, but she is telling me again, for the 37th time that day, that she loves me. It is worth it when Corbin tries to hang on me all of the daylight hours because, when she goes to bed, I am grateful that she still wants to hang on me. I feel like I can breathe when Sawyer still asks for a hug and a kiss before she goes to sleep - no matter how angry or what kind of fit she had minutes earlier. And, of course, when my freshly turned 9 year old still wants me to crawl into her bed to talk about the day - it can be a whole story of 3rd grade drama or telling me jokes that she read.

December reminds me that it is okay.

I tried, desperately, to remind myself that all is okay when Miller woke me up at 4:30am with a princess sofia dress that was previously wrapped and under the tree. She was thrilled to have it, of course, even though it was 4 hours earlier than I had hoped she would receive it. Sawyer had gone down to open a third of her gifts at 4am and then rounded up Miller and Reese to come down and do some of the same. Is it funny, now? yes. Was it funny, then? no. I was heartbroken, honestly. I went out at 9:30pm on Christmas eve to get a few final items and I didn't even get to see some of the overjoyed faces that I had hoped for. But it was done and to them, it was sneaky and magical. So I had to breathe, grit my teeth, and remember that every well thought out plan can capsize at any time. But, hey, it didn't ruin Christmas morning in the least.

It has been in the 70's lately and so we have spent a lot of time outside. Christmas was no different. The kids opened presents with just us, then played outside and with their toys all morning, until the rest of the family arrived for the second round of the day. We ate delicious snacks and didn't stress about a big lunch/dinner that no one would have room for. We went to the park in the late afternoon and play with friends and went to bed as early as our tired bodies would let us.

I want to spend the next week with EJ here doing things around the house - organizing, purging, getting ready for 2016. Of course these are the same resolutions that everyone seems to have right now, but I am okay with jumping on the bandwagon.

Take the good with the bad, the love with the heartbreak, and the hope with the failures. Make 2016 a year of hearts filled with joy. Real, pure joy.

Instagram: www.instagram.com/theskelteseven

Facebook: www.facebook.com/gingerfight

half way.

2015-12-18T11:55:00.002-06:00

We are halfway through the school year.

In a few hours, I will pick up my 3 oldest from elementary school and we will start christmas break.
I thought I would worry every day that Reese was at school - but I didn't. I thought she would need so many accommodations to be with her friends, but she doesn't. I thought my days would be filled with emails explaining things to teachers, but they aren't.

Everything is so wonderful. I went to parties this morning, but per the usual, only R really wanted to take as many pics as I wanted to ;)

I love their poses and their giggles. I love watching the kids in the class interact w my girls. I love seeing Reese's friends come over and hug her or rub her back when she got sad that I was leaving. I love it all.

We are about one more month away from our next MRI, in January. I think I mentioned before that we aren't going to stop chemo after a year, but ride it out for a little bit longer - since her side effects are nil. So we will hit a year on this chemo in the next few weeks and I can't believe how time has flown.

One day last week, the school called me because Reese was acting tired and apparently she said her head hurt. I ran up to the school, wanting to throw up the entire drive. I get there, she hops into the car and shrugs her shoulders when I ask about "what hurts?" I ask her about her head? nope. She just sort of smiles as if she just wanted to spend the day with me. No nap, no complaining, nothing all afternoon - except "I have some boogers". While she did get to come home early and hang out with me, it made me remember that we are not, in fact, normal. Other kids go home because they don't feel good and their moms don't cry and want to throw up on the drive there. Just me. Other moms take their kids home and put them into bed and hope they don't have to run to the doc, but I do neuro checks and make her squeeze my hand w bad arm.

When everything is going great, the rug that can be pulled is so very large. It is easy to forget it is there, but just a smidgen of movement and I feel like falling.

We are filling the break with the zoo, aidan's 9th (!!!) birthday, playing outside in potential 70 degree weather. We are going to bake and do crafts and wait for santa to come. So much more going on than worrying. Hundreds more smiles than tears.