december.

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. 

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merry christmas 2014.

there's a cloud. 

it's not a dark cloud really, but it is there. lurking around the corner. i know that the next few weeks wade between "nothing to do" and "things that are really important" and so worry flows through my veins and thoughts ever so often. i think about her chest MRI for port placement, getting her port, but mainly, just praying that the tumor hasn't grown more and that vinblastine is going to kick it to the curb.




yet, none of that matters today. because it is christmas. truth be told, it doesn't matter any days because knowing there's a cloud doesn't heal brain tumors. but some days, i am more aware - and some days i forget its even around.

EJ is upper respiratory sick - to where his chest hurts at almost every movement. miller has the flu and an ear infection. corbin has the flu. reese is on tamiflu as preventative. no one needs to be at our house to catch this - so it was the skelte-seven today, celebrating alone.

...which is funny that i even typed that; with 7 people in a family, no one is ever alone.

last night we went searching for pizza. we ended up at mexican. a win either way. i drank some wine and brought everything out to finally wrap presents. i love doing things at the last minute - and that is not sarcasm. i shop late, plan late, wrap late, but it makes me so excited.

reese was up early, as always. aidan and sawyer were the next to come down - already begging to wake corbin and miller up.

i took a shower. mainly because i remember how awful that was when my parents did that to me (lol). it made me giggle. but they were up cleaning their rooms making space for what santa had given them.

we really had no misses. my parents brought their stuff by yesterday, careful not to catch any germs. and between all of us, the kids loved, literally, everything.

2014 asrmc xmas from amanda skelte on Vimeo.
^ if you want to watch that, i made that for my parents so they could see some present reactions :) otherwise, pics will be below. my camera died by the time we got the trampoline out and such (omg they are so excited!) - but EJ started building that, until he just was in too much pain. poor guy. AMC wore their PJs most of the day, but reese said she needed "daytime clothes!!" on. and sawyer had to change into her tinkerbell dress the second her new heels came ;)

tomorrow is corbin's birthday - and i'll blog a separate one for she and aidan's big days. but it's amazing to me that my kids are now 8yo-1yo. no "____ months old!" just.... a year. no babies. no babies on the way. and then an EIGHT year old makes me feel so old haha

jan 2nd is reese's chest MRI. i'll have to somehow harass surgery scheduling on monday at the latest to get a port date on the books, so we arent pushed out for starting chemo any further.

so, merry christmas. christmas number 3 with this brain tumor, with the new found friends and prayers. christmas number, oh, 7? since i started this blog. seems so surreal to me to have so many years captured in the same place, but each one so incredibly different. they will continue to be so, since our new end date, for chemo, is now going to be in 2016.

this christmas, my kids took reese's new medical kit, that she got from santa, and had port surgery. reese laid on the floor and "got a new port" willingly from surgeon, aidan, and assistant, sawyer. she got up and said she was "all done!"

next christmas, i hope that she almost is... all done. for good.