Still no news… letting go of the future

On my church’s mom’s group email list, we have a question of the week.  This week’s one really touched me because it hits on a lifelong area of struggle for me… finding contentedness in our present life.  In answering it, it kind of turned into a blog post, so I thought I’d share here.  It’s kinda long, but I hope it speaks to some of you.
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I somehow missed this QOTW in the craziness of yesterday, but was so moved by what you posted that I had to share my answer.  The question was, “As a mother, are there things in life that we are afraid to relinquish control of?”
As most of you know, a little over a year ago my husband Kevin was diagnosed with melanoma (a serious form of skin cancer).  Over the weeks and months that followed, we slowly came to the realization that this was, in fact, a big deal, and that we very well might lose him to this cancer.  Both Kevin and I have had many moments where we sat staring each other in the face wondering how this was all going to play out and how we would make it through.  I constantly said, “If only we KNEW which way it was gonna go.  Then we could make a plan.”  Well, for those of you who have been following, we may be about to be on Plan E.  So you can see how well THAT worked out.
One of the biggest areas of my life that I have struggled with was living in the future.  I spent most of my childhood thinking that once I grew up, then I’d be able to make friends, and dress cool, and be popular.  I remember in my late teens thinking that life would start in college.  I remember when my college days ended up looking differently than I’d imagined, dreaming of a house and a family to raise. Seven years ago, one of my dreams for the future came true, marrying an amazing husband.  And for the most part, I was happy.  But still I struggled as we lived in a cramped apartment, tried to pay down mountains of debt, and I worked on finishing my undergraduate degree.  I still found myself dreaming of “someday” with my focus now fixed on a house, the very thing that was pretty much an impossibility in the days of the housing boom and Los Angeles’ $700K home prices. Still, I struggled and tried to find contentedness in the day.  Then, after we moved to Atlanta to be closer to my family and for those elusive low housing prices, I really felt like life was “about to start”.  We spent a year looking for a house, lived with my parents for 8.5 months, and even made it through a 2.5 month job search for my husband.  I was starting to grow a little, having patience that God was working things out, but still thinking that once we finally had our house, then we’d be settled, a picture perfect little family with our girl and our boy.
Evie was born two weeks early and had a weeklong NICU stay.  Still, I didn’t surrender to God my desires to live in and plan for the future.  I looked to the day she’d be released and come home with us instead of focusing on her in those quiet moments.  Then she was the most colicky baby I’ve ever met and I spent six months waiting for her to grow out of it, praying daily to stop wishing this time away, this babyhood that was so fleeting and yet so miserable in the moment.
I knew, stirring in me, that God wanted me to stop yearning for the future day, that future moment when everything would be “just perfect.”  Then, in September of 2011, we did it.  We closed on our first, and hopefully only house.  As the contractors started to clean it up with fresh paint and flooring, I saw my dream house begin to appear from the dark and dirty bank owned house it had been.  Walls came down and new dreams went up.  I began again to envision our life through the years in this house… Celebrations and daily rhythms of life… homeschooling in the new, sky-light filled office… sliding down the slide in the playroom… hosting guests in the dedicated guest bedroom.  My head and my heart began spending way too much time on pinterest, making plans for the future.
Two weeks after we closed on the house, Kevin got a phone call.  It was just a casual call from the dermatologist saying that the biopsy of his bleeding mole on his face had come back cancerous.  A quick google search told me 90 percent of skin cancers are non malignant and so I put the worry out of my mind until the follow up appointment they’d scheduled for a week later.  Oddly, I didn’t spend any time thinking about the future of THAT.  It seems my struggles had always been my future dreams, not my future fears.
After that appointment came, with the jaw dropping realization that it was, in fact, melanoma, the less than 10% of skin cancers that were the bad kind and that this was, in fact, a very serious and aggressive form of it, my future dreams came to a screeching halt.  I was forced right into the present day, knee deep in contractor delays, moving boxes, scheduled surgeries, a newly purchased mini-van with a dead transmission and a 10 month old with a urinary tract infection.  And so it has been for the last year.  Every day has been filled with just surviving and tending to the most pressing issues in the moment.  It’s not exactly the way that I would have wanted God to teach me to let go of living in the future, but it sure has been effective.
That’s not to say that every day has been a horrible struggle, nothing of the sort.  It’s just that, every day, I wake up and ask God to help me figure out what has to be done TODAY, because I have nothing else that I can plan for.  I ask, no beg, His help to figure it out, because I simply cannot do it myself.  That point was made abundantly clear to me through the past year.
Lot’s of days, we wake up and I realize that what is most important today is to spend special time just focused on the kids, regardless of the disaster zone in the house.  So we run away from the mess… to a park or a coffee shop or even to the playroom at church.  We sit and connect and play and then I come home and feed the kids and put them down for a nap.  Sometimes God helps me find some extra energy to deal with the one or two most important phone calls on medical bills or whatever during nap-time and sometimes He grants me peace and rest to nap myself.
On some days, it’s a day where the bills or phone calls or traffic tickets or rodent problems absolutely must be dealt with, and God urges a friend to send me a text in the morning, just checking in, and offering help with the kids.  I ship them off to that friend or neighbor and focus on the tasks at hand, again realizing that God is carrying me and providing for me, literally one hour at a time.
Some weekends, Kevin is well and we have wonderful family fun days.  Other times, we are exhausted and send the kids to my parents and lie in bed for half of our Saturday.  Then we go out to breakfast with a gift card some kind soul has sent to us.  We sit and connect over coffee and eggs.
In all of those moments, God reminds me that His bread is DAILY.  It cannot be treasured and saved up for the future.  He reminds me that worrying will do nothing about the future and that there is no place for it in HIS plan.  He has literally jerked me out of my future dreaming to be present for today.
It has been no small journey, and still it continues.  There are many, many moments when I wish I could look to the future and see something other than a big out of focus blur.  There is no possible way to dream of the future right now because we have absolutely NO WAY of knowing how this will play out.
But isn’t that really the truth with all of us?  I mean, I keep reminding myself that everyday Kevin or I or the kids could die in a car accident (and that frankly, it’s statistically more likely!).  But normally, we don’t live like that.  We live like we have days and days and years and years ahead of us.
And I don’t know about you, but I have spent SO much of my life thinking of those days and days and years and years of future enjoyment at the sacrifice of today’s present.  Today’s present really IS a present.  It’s the only one we have!  God does NOT promise us future days.  In fact, He makes the point abundantly clear that while He has a plan for our lives, including our futures, that is not our domain to consider.  We are to look to Him, trust Him, and eat of His daily bread.  The manna that the Children of Israel collected for the future literally rotted overnight.  And again He reminded them that His provision was for the day, nothing more.
But also nothing less.
And so back to the question.  As a mother, what am I afraid of relinquishing control of?  My future dreams and plans and desires, absolutely.  But as God pries them out of my tightly clenched fists, I realize that I was never in control to begin with, and that a Father who is so much wiser and more loving and more powerful than I will ever be… Well, He’s already on it.

Scans today. A chapter ends. A chapter begins.

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Okay, so I’ve been in the midst of portrait party editing and tending to my little chicks and it’s all been a wonderful blessing to keep me busy in the days leading up to today, but now here it is upon us.  Kevin Hill has scans today, at 4:15 and 5:30 to determine if the Anti-PD1 treatment he’s been on at UCLA has been working enough for him to continue treatment.  The current chapter of our life comes to an end this afternoon and what awaits is still yet to be known.  As our family verse reminds us, [We] watch in hope for the LORD, [we] wait for God [our] Savior; [Our] God will hear [us]… Micah 7:7.  Now, we watch and we wait.

 

How to prepare for guests

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While we are ticking off the days till Kevin’s next scans and making other pre-emptive treatment plans, I thought I’d digress a little from cancer news and write about fun stuff this week.  I’d always envisioned this blog more as a place for fun little posts like this, and I suppose there’s room for both kinds, right?  More celebrations posts to come this week too!

When we were looking for a house, one of the things we knew we wanted was four bedrooms.  We only had two kids (and knew already that we were a “two and we’re through” kinda family), but we really wanted that fourth bedroom to use as a combined office and guest bedroom.  So when we ended up in a house with four bedrooms AND a separate office, we were overjoyed that we could have a dedicated guest bedroom.  And when I say we, I really mean me.  This was my little room to decorate and make sweet and special.  I like to call it The Hill Family Bed & Breakfast.

Little did I know that we would end up really needing to use it this last year.  Between all of Kevin’s surgeries, radiation, and other various treatments, we have had many, many house-guests come to visit and help out.  It’s been SO wonderful to have a separate space where our guests can retreat and relax, and I’ve really worked to make the space as comfortable and useful as possible.

I’ve definitely had the chance to put this guest room through it’s paces, and while not everyone has a separate, dedicated room for guests, I hope that all of you will find a few tips here that will be helpful as you prepare for your own guests this upcoming holiday season.  Most of these ideas can still be used whether your guest is couch surfing, sleeping on an air mattress, or borrowing the kids’ room.

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  • Have lot’s of clear, horizontal surfaces

When decorating this room, I was just itching to put out lot’s of lovely little knick-knacks and such to make the room as homey as possible.  But I realized that when my guests were here, they needed all that space to put their stuff.  So now I try to leave as many clear surfaces as possible in the guest room.  I also try to keep lot’s of horizontal spaces clear in the common areas of the house as well for guests to set down their bags, keys, phones, etc.

  • Provide bedside lighting

When guests are in an unfamiliar room, it can be difficult to stumble back to the bed after turning off the overhead light.  A simple bedside lamp adds a welcoming glow to the room.  I also added a night-light to the room on the advice of one of our aunts.  It makes it much easier for guests to find their way to the bathroom in the middle of the night and I put it in an outlet along an open wall, so it’s easy enough to unplug if they find it distracting.

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  • Provide water and light refreshments or information about how to find them

I like to set out a carafe of fresh water and a glass in case my guests need to take bedtime medicines, etc.  I also printed out a simple little note with information on where to find coffee and other snacks in the kitchen and how to adjust the thermostat, where to find more blankets, etc.  It was easy and fun to make my little sign and I just popped it into a dollar store frame.  And it totally makes me smile.

  • Provide extra seating

It’s nice to have somewhere else to sit and enjoy some quiet time reading a book or working on the computer without always having to perch on the bed.  If you have space for two or even three seating options, that’s a bonus!

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  • Provide the wifi password and extra outlets to power up

My friend Erica gave me this little chalkboard decal and I knew it would be perfect to put the wifi info on, since my husband is forever updating and changing it.  Visitors love being able to log right on after they’ve settled into their room for the night and not have to disturb us for the password.  I also tacked a little shelf up right behind the desk and placed a power strip on it.  This way my guests can plug in without having to crawl around on the floor, but they don’t have a nasty pile of cords taking up their workspace.  I’d like to eventually replace this strip with one of those new fangled ones that has USB charging ports built right in.  One less thing for my guests to have to remember!

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  • Put a clock in the room, but not if it ticks

It’s very nice to have an extra clock when you’ve been travelling, especially if you are in a different time-zone or you’re on someone else’s schedule. But if the clock ticks, put it in the bathroom instead so it doesn’t keep your guests up all night.

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  • Provide extra toiletries and make sure your guests know where to find them.

I know I am always forgetting something when I travel.  So to make my guests more comfortable, I dumped an assortment of hotel toiletries and other necessaries in the top drawer of the guest bathroom.  I also made sure to include some packages of feminine hygiene products, because trust me, that is not the thing that you want to ask your hosts for in case you forgot to pack them.  Not that it’s ever happened to me before or anything.

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  • Provide a place to put their suitcase and a basket for dirty laundry

I found this luggage rack at a thrift store for ten bucks and I love it!  It makes me feel like I’m running a real little bed and breakfast!  I also stuck a small laundry basket from the dollar store in the room so guests have somewhere for their dirty laundry to collect.  You could even line the basket with a plastic bag in case your guests prefer to bring their dirty laundry back in their suitcase with them instead of washing it before they leave.

Some other things that are nice to consider for guests:

  • If you have a TV in the room, print out clear, simple instructions for how to use it.
  • Put a blank notepad and pens into the desk drawer, along with perhaps a city map, bus or subway schedule, and a subway card.  Pizza or takeout menus could be nice too.  Think of the types of things you’ve appreciated at a nice hotel stay.
  • If your guests will be coming and going separately from you, provide a set of keys and clear, written instructions for how to work the alarm.  Put the alarm info on the back of an old business card so they can slip it into their wallet.
  • Clear out space in the closet and leave some empty hangers for your guests.

Not all of these tips will be relevant to everyone, but I hope that implementing even a few of these ideas can make hosting during the holidays easier and more enjoyable for you and your guests..

I hope you also enjoyed seeing a few pics of our guest bedroom.  It’s my chance to slowly start showing off little parts of our house.  It’s still a work in progress, (as are all of our homes, right?!) but I’m enjoying whenever we have a few moments of peace to fix up our house and make it even more our home.  I want to get some art up on the walls, and I’ve already put some new lamps in (one on each side of the bed.)  I’d also love to place a hanging lamp over the armchair for reading, and do something to tie in the red chair with the rest of the room (hopefully with art).

Well, I hope you all have a wonderful start to your holiday season.

And to all our friends and relatives who are far flung, come visit us, the door is always open, and the coffee is always ready!

Kevin Update and Celebrations – Kevin’s 36th Birthday!

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Okay, so here is the latest on our cancer news. Kevin and I flew to Los Angeles early last week for his fourth and final infusion before scans to check the efficacy of the treatment. In our appointment, the doctor measured the tumors on his neck and confirmed that they have grown some since he started this treatment. We won’t know for sure until scans in one week (so get praying everybody!!!) but it’s looking likely that the treatment has not worked and that we will have to move to plan D or E or whatever it is we are on at this point.  In fact, Dr. Ribas told us to start preparing for alternate treatment plans.  

Not really what were hoping to hear.

But… it is what it is, so we journey on.

Kevin will have scans conducted at Emory next Monday, November 26th at 4:15 PM.  If you think of it, text him throughout the day to remind him NOT to eat, because if we have to delay these scans by even one day, I swear I will lose my mind!

Anyway, If we get bad news from the scans, we will move to a treatment at the National Institutes of Health in Washington D.C. It’s a grueling treatment called TIL therapy that involves harvesting one of his tumors, finding the strongest little cancer fighter cells that are in there (called Tumor Infiltrating Lymphocytes) , growing an army of these fighter cells in a lab, destroying his immune system with chemo and various other instruments of torture, then infusing his body with this army of super fighters, and topping it off with a week of InterLeukin-2 (his favorite treatment from last summer) to kick his new super immune system into overdrive and maybe, just maybe, kill those stupid cancer cells once and for all. Then they send us home for him to recover from all that torture. They are telling us to expect at least3 weeks inpatient and then 2-3 months of him being too sick to work.  That’s in addition to several back and forth trips before and after the main treatment.

Who knows what it will actually be like, and who knows if that is even the path we will be on. There is still definitely a chance that this current treatment IS working and that he WILL be able to continue with it. And so we brace for the worst and pray for the best. I hope you will all join me in praying for AWESOME scan results in one week!

So anyway, after our discouraging appointment with Dr. Ribas on Tuesday, Kevin got his fourth infusion of Anti-PD1.  Then we had a nice birthday lunch with his cousin Claudia and spent the afternoon ogling techno-toys at the Microsoft Store and the Apple Store (Kevin is lusting after some HP Envy X2 thingy, so we can go back to our Apple vs. Microsoft wars.  We are tech nerds to our core).

Then we headed back to the Vornbrocks’ house where Lila had been spending the day getting things ready for a little birthday party for Kevin.  We kept it small with just a few of his childhood friends and their families.  It was a perfect, laidback gathering, and I’m so glad that Lila made it happen.  Like I said earlier, things like celebrations keep tending to fall by the wayside when you are just surviving day in and day out.  And this celebration was especially special because Kevin also celebrated his “cancer-versary” just about a month earlier.  He has made it a year!  He made it to 36!  This is no small feat in the melanoma world, and I am so incredibly grateful to still have that man around.

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Yes, there really are 36 candles on that cake.  He’s earned every last one of them!

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There was so much smoke afterwards, we almost had to call the fire department!

 

And P.S.  the photographer in me just can’t let these pictures go into the interwebs without saying that it was really really dark but I refused to use my flash, so the color’s more than a little off.  Also, I have not edited these pictures one bit.  They’re far from perfect, but I’m working on letting go of perfection.  So this is my way of sharing with ya’ll.  Trust me, it’s a big deal for me  that I’ve started posting pictures un-sharpened and with color all wonky, etc.  I’m making progress, ya’ll!

Celebrations – Jude’s Party

My adorable little son just cracks me up.  He is three years old and discussions with him about everything are fun and often hilarious.  Lately he’d been telling me all about his party that he was going to have.  He’d say, “When we have my party, we are going to blow bubbles and play with water and do BIG LOADER!”  (a favorite car toy of his)  I would ask him about this mysterious party and then he’d get all cagey and shy.  Then an hour later he would say, “We are going to eat yogurt and fruit and bagels at my party!” (what we were having for breakfast at that moment.)  This went on for a good part of this week and I realized that he’d been to a few parties lately, including his cousin’s birthday party and the Halloween party, and he just really wanted to have a party of his own.

 

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So I decided to let him throw a party.  On Friday night a week ago, I emailed my church’s mom’s group, some friends and family, and messaged our neighborhood’s facebook group that Jude was throwing a party on Saturday from 4-7.  I said that it was a three year old-centric party but all were welcome to come.

 

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On Saturday morning when Jude woke up, I told him I had a surprise for him.  He curled up in my lap in the rocker and I told him that today he was throwing a party. And that we had lot’s of work to do that morning to get ready for his party.

 

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Kevin was sick and not able to take care of Evie while Jude and I shopped and prepared for his party.  Of course, right?!  So again I prayed, then gratefully reached out to my neighbor Dawn, who took Evie for the morning so Jude and I could have special time planning his party and Kevin could get some more rest.  I was glad that he ended up feeling well enough to at least enjoy the party.

 

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We had a wonderful morning starting with breakfast at the bagel shop. We planned his menu and decorations then headed to the store to make his purchases.  I asked him to make lot’s of decisions like, “Do you want goldfish crackers or animal crackers?”  And he would invariably answer me, “I don’t know.  I need to think about it.”  Any of you who know my husband should be laughing right now.

 

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So, we got his snacks and decorations purchased, which consisted of goldfish crackers, apples, grapes, carrots, AND animal crackers.  And of course milk and cookies.  Because what party would be complete without milk and cookies?

 

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And balloons.  That was really his only request for decorations.  Balloons, and lot’s of them.  Jude helped me prep his refreshments and do some house cleaning  then he, lucky kid, took a long nap so he would be nice and refreshed for his party.  I of course, finished cleaning during naptime and really right up until his party started.  I have a philosophy though that the best way to get my house clean is to throw a party.  That way I at least have some motivation to get things done.

 

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One of the things that Jude said to me multiple times that morning was, “What if nobody comes to my party?”  It just broke my heart to hear this little voice of insecurity coming from my son.  That’s the kind of thing that I would worry about, but a three year old?  Where does this come from?  Jude and I were both pleasantly surprised that his party turned out to be quite the neighborhood bash.

 

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Where did we go? Darkness, Waiting, and Celebration

Where have we been?
Hello dear friends, as I’m sure you’ve figured out, when I don’t write for a while, our family is struggling.  We’ve had more sickness, but thankfully not from cancer.  When we got back from our last trip to LA, the kids welcomed us with coughs and runny noses.  They never turned into anything more than colds, but they are of course the particularly nasty kind that hangs on for weeks.  And I got sick too and was laid up for several days.  And oh yeah, Kevin managed to catch whatever the kids had, except it turned into full blown flu.
 
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He stayed home from work one day, but pushed himself to make it in the rest of the days (because as you know, if he doesn’t work he doesn’t get paid at this point.)  Also, it’s just better for him emotionally to keep having a regular schedule and being productive whenever he can.  Have I mentioned how proud I am of that man?

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Doctor’s appointment for Evie this time

 
 
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As far as me, I have been struggling with just keeping up.  Combined with the shorter days, I have been fighting to keep depression at bay.  I have so many moments through the day that are filled with joy, and I am just loving having my kids around and being so involved in their lives.  But I also have equally as many moments in my days that are literally and figuratively filled with darkness.  I think this is the first year that I have been able to pinpoint a lot of  it to the changing of the seasons.  When I look back through my life, I can see that almost every winter, I entered seasons of struggling with feelings of overwhelm and exhaustion.  I have no idea why it took me 33 years to figure out where so much of it is coming from, but I’m grateful regardless.  I’m working hard to figure out the things I need to do to help me find an even keel and to cling to joy instead of to drown in darkness.  The biggest and most important thing is to continue recognizing my need for a savior.  I am so grateful that God loves us so much that His mercies come anew EACH morning.  And I also cling to the reminder that JOY comes in the morning.  Because mornings are often the hardest.
 
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In other news, we have two out of three of our test results back, with one out of three answers to our questions about Kevin’s health… ugh!
 
1.  Kevin has a CLEAR BRAIN SCAN!!!!!  Can I tell you how amazing this is?  To put it in perspective, if it had not come back clear, he might have been gone by Christmas.  With melanoma, that is often how fast it goes once it is in the brain.  It doesn’t mean it’s a sure death sentence, but it would have been VERY tough news.
 
2.  Kevin had a clear abdomen x-ray.  This is good, we think, but it doesn’t really provide many answers.  I think the next step is that Dr. Lawson (Emory) and Dr. Ribas (UCLA) are going to order an endoscopy, although they have said that that might not find anything either since it only scopes the upper part of the GI tract.  As long as the presence or not of cancer in Kevin’s gut doesn’t affect his treatment, I’m not sure we are going to worry too much about it either way.  But it would explain a lot of symptoms.
 
3.  We do NOT yet have the results of his biopsy, which would tell us whether or not the Anti-PD1 treatment was having tumor infiltration (i.e. potentially working).  That’s really the one we are on pins and needles about, and it’s been frustrating that we STILL don’t have news.  Kevin has his next appointment tomorrow so we are hoping we will have something to report.
 
We are currently in LA (flew in this morning) and will spend Tuesday morning at UCLA.  Then we’ll be gathering with a few friends to celebrate Kevin’s 36th birthday.  Can I tell you how incredibly grateful I am that he will be 36 on the 15th?  He has truly beaten the odds already and we cherish each and every celebration we have these days.
 
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Jude partying hard with his “street gang”
 
We have been living moment to moment a lot these days, and I am thankful that we have HUGE margins because they usually get used up every day, but huge margins pretty much means you don’t ever have anything planned in advance, your days are just wide open.  This often means that things that need planning just don’t happen.  Things like parties.
 
Pretty much every celebration we have had this year has been planned the day before AND still just barely happened (i.e. someone got sick and I very nearly had to cancel).  Often I’ve planned to have friends over for dinner and we’ve had to cancel because we had to make a trip to the hospital for fluids instead or something else like that.
 
It’s been a hard year of letting go of something that I really value… time in fellowship with family, friends, and neighbors.  I love to host parties, and gather with friends and neighbors on a regular basis.  On Halloween, we almost didn’t make it to my sister’s house for their neighborhood block party and trick or treating because Kevin was sick all day.  And even then, Kevin just wasn’t able to make it with us.  It was a struggle for me, because we’d already cancelled so many things this season, pumpkin patch outings, festivals, etc.  
 
And that is just a teeny tiny snippet of the things that haven’t happened or times when plans have gotten shot to heck and we’ve had to just call the whole day a wash.  It’s easy to get down and start counting my sorrows instead of counting my blessings in seasons like these.
 
But truly, I don’t end up feeling any better complaining and being sad.
 
And counting my blessings is a form of celebration in its own right.  
 
We’ve actually had quite a lot more celebrations than I thought this past year.  Some of them have just looked a little bit different than I thought they would.  I have been going back through my photos for the year and have discovered scads of photos of celebration.
 
And I would like to share them with you.
 
So if you don’t mind, my next post will begin a series on celebrations.  And I make absolutely NO guarantees on the regularity of said series.  Hope you enjoy and find reasons to celebrate as well.
 
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Learning to skip is definitely reason to celebrate