Monday, August 29, 2016

You Must Be Excited


For the past two weeks, wherever I've gone with children, people have commented to me, "You must be so excited for back to school!"

Yes. Yes I am.

When I mention we homeschool, I often get a look of pity. I think this look especially comes from people whose point is that I'll get to get rid of  a break from my children for a good portion of the day once school begins. I usually comment that I love spending time with my children. One man just could not believe that I was sincere...or that I could possibly enjoy spending all day with my children. A woman's response was, "really...even the teenagers?" Yes. Really. My teenagers rock.

Am I excited for back to school?
Absolutely!

But perhaps not why you'd think.

As a homeschooling family, back to school means something a bit different. Back to school means kicking off the school year with a Beach Party! Why not? There are considerably less people at the beach at 10AM on a Friday while school's in session. We also look forward to less crowded museums, science centers, libraries, aquariums, movie theaters, and other places that we love to frequent during school hours. Homeschool co-op will soon be back in full swing, which is fun for our entire family. This session is looking amazing, with class offerings such as Painless Algebra, Robotics, Introduction to Improv, Project Management,  Knowing Your World, and Music & Mayhem.


The school year also brings opportunities to participate in lots of things that happen during the school year such as Tuesday Night Sunday School, Epoch Arts Haunted House, Epoch Arts Mini-Production, homeschool days at museums and science centers, St. Paul Puppet Academy, and so much more.


And it means my children will be missing their friends who attend school because they often don't get home until late afternoon or early evening...and then have homework.This is sometimes difficult for my always-homeschooled children to grasp, as they eagerly await their friends' arrivals home each day to either play with them in our neighborhood, or online for those who live to far away for after school get-togethers. 

Homeschooling has opened the world up to me and my children. I have learned more as a homeschool mom than I retained from all my years in school. I love learning along with my children, and nurturing their love of exploring the world around them, following their passions, and discovering things about themselves.


Tuesday, August 16, 2016

Not That Kind of Date



All I wanted was to surprise my husband with a quick movie date on a Sunday evening. 

What I wasn't expecting was to feel like I'd been run over by a house, and therefore find myself calling him to come home from work early as I figured out whether or not I needed to go to the Emergency Department.

Now, one would think that feeling like you've been run over by a house would automatically and immediately qualify you for a trip to the ER, but apparently my brain doesn't work that way. My brain decided that if I just laid down and rested for a while things would improve. Then laying down became excruciating. Sitting was worse. Standing was near impossible, and by the time my amazing husband was whisking me away to the hospital, I could barely walk.


Nurses and doctors ask a lot of questions. After going through my thought process ... most likely a UTI, but may also be kidney stones, and please check my liver as well, and a psoriatic arthritis flare to top it all off and make the pain a 5,436,723,027 on a scale of 1-10...they did a ton of bloodwork and other tests (no, I'm not pregnant) and hooked me up to IV fluids. Then they asked me if I'd ever had morphine. After the morphine and anti nausea drugs (did I mention I hadn't kept anything down all day?) were on board, I was still not feeling better. Morphine barely took the razor sharp edge off of the pain. They diagnosed me with a complex UTI, gave me three prescriptions, and sent me on my way.

I learned soon after arriving home that I don't get along well with oxycodone. It makes me super paranoid about ridiculous things and keeps me up most of the night obsessing and having near panic attacks over said things. Making things worse, not even the morphine oxycodone combo made the pain bearable enough to sleep. Finally exhaustion took over and I slept a bit.

The next day, I learned the the anti-nausea drug had the exact opposite effect than it was supposed to.

A little over a week later, the UTI is under control, my psoriatic arthritis is most definitely not. But that will come in time.

I've realized that this sort of thing happens around once a year. Somehow, some way, my pain gets out of control and I land in the ER. I'm thankful it's not more often than that. The thing is, with autoimmune liver disease, taking pain meds can be dangerous. My doctors cannot prescribe enough pain meds to adequately treat my pain, because if they did, it would put my liver at risk. Finding a balance is difficult, but essential. 

So, after a week spent mostly in bed, I'm getting back on my feet again, slowly, but surely. 

Eventually I may even get to go on that movie date with my husband...


Wednesday, August 3, 2016

True Life


Pain threatens to swallow me whole.

I'm so excited - so many things to look forward to!

It's a struggle to open my eyes each morning, sleep pulling me back into it's pain-dulling clutches. Gone are mornings of waking refreshed for the day ahead. Instead torturous sleep gives way to a fuzzy eyed shroud of pain that clings to me throughout the day.

Upon waking each morning, my mind is filled with the exciting things we have coming up! Epoch Arts Homeschool Co-op class proposals are pouring in for Autumn Semester. In a little over a month, I'll be heading to Camp Calumet for my first School of Lay Ministry retreat and after that, a homeschooler's beach day. I'm looking forward to Finn's baptism, a day at Old Sturbridge Village, and a quietish month before homeschool and other activities are back in full swing.

There is so much I want and need to do, but my energy is lacking and my pain levels are almost unbearable. Some days I can barely leave the relative comfort of my bed. I can see how people quickly become addicted to narcotics, as the one pill I'm able to take just takes the edge off, and it's so tempting to take two or three to get some real relief. I base what I do each day by the amount of pain I think I can cope with each night and still get some sort of sleep.

Our Autumn is looking amazing. Three children will be participating in Epoch Arts Haunted House "Creatures of the Night" and two in their Mini Production "Collide." I look forward to seeing what Beth has in store for the teens - and for me! - this time. Tuesday Night Sunday School and St. Paul Puppet Academy are both looking like they're going to provide wonderful faith-filled fun. And all activities that feed my soul and don't require vast amounts of energy on my part. 

Living with chronic illnesses and chronic pain consumes every moment of every day.

Thriving with chronic illness and chronic pain consumes every moment of my day.

Truly living life while coping with chronic pain and illness has more to do with perspective and balance than it has to do with how well I feel at any particular moment. I'm in pain every moment of every day, but, for the most part, it's my choice what impact that has on my life. For me, I'd rather be in pain and doing something I love than be in pain and wallowing in self pity. I do have my moments, and an occasional day spent in my pjs in bed, but that's not my life. 


My life is looking forward to doing amazing things,no matter how small. It is taking on things that feed my spirit and energize me. It is praying that this treatment, or the next, will rid me of some of this pain and exhaustion so that I can have a reprieve from the intense work of living in this body. It is living in hope, in service to others, and in gratitude for the wonderful things life has to offer. 


Thursday, July 21, 2016

What Have I Gotten Myself Into?


My body isn't reliable. For that matter, neither is my brain at times. And yet I've found myself saying yes to huge commitments twice in the matter of a couple months. My logical brain reprimands me for taking on such things, causing doubt to reign supreme. What have I gotten myself into?

First, I said yes to taking on the position of Team Leader for Social Security/DSS for New Start Ministry, which is sponsoring a refugee family and helping them resettle locally. Well, we are as soon as our paperwork is approved by Integrated Refugee and Immigrant Services (IRIS) and we're assigned a family. 

I felt called to do this - to do something new...something amazing, life-changing and extraordinary for someone else. It is good to research and discuss things other than medical issues, homeschool stuff, and parenting or breastfeeding issues.

And then today I filled out an application for the School of Lay Ministry - a two year commitment to learn and grow spiritually. I've been wanting to do this for a few years, but have doubted my ability to find the resources within myself to complete the work required. With greatly-appreciated financial help (thanks Mom!) and a lot of prayer, I am brushing doubt aside and taking a leap of faith. 

I feel called to grow in my faith; to learn more about the Word and Lutheran Theology; and to discover new ways to use my spiritual gifts in my church and my community. 

Due to a bit of anxiety surrounding taking on these projects, I need to remind myself often that both of these commitments work within the reality of my life - much of what I need to do for both, I can do in my own time. The meetings will be good-for-me outings where I get to work with others to improve my life through faith conversations and the lives of others through the work of refugee resettlement.

Doubt may continue to creep into my thoughts as I move forward with both of these wonderful experiences, but I know that God will get me through. And deep breaths. And prayer. And coffee. 

Throughout the next few months and years, I might again question what I have gotten myself into, but I have a feeling my answer will be one of joy and excitement and peace. 

(The photo at the top? That's me on the left, before a gymnastics recital thingy. Nothing to do with the post...just a photo that came to mind in relation to the post title.)

Monday, July 18, 2016

A Moondragon at Camp



For months, this child had been in tears almost daily with anxiety over going to Resident Camp at Camp Calumet. Even though he knows Camp Calumet well, knows much of the staff, and is comfortable there. He wanted to be dropped off last and picked up first. 

There are things at Camp that aren't compatible with this high functioning autistic child's sensory issues... like sand and showers. And then there's the fact that a week away from Mama and Daddy seems incredibly daunting.

And then drop off time arrived. He chose to be dropped off first. After a brief chat with and a "shoe five" from his counselor, Ben, who happened to have the exact same footwear, he let me know it was time for me to go. No tears. No hanging on.

Mama, of course, spent the first few days of camp trying not to worry about this child. Not that I didn't have full confidence in him or in the Camp Calumet staff ... it's just that it's difficult for this Mama to not be completely sure that her adorable child is having the time of his life. Then the first letter arrived.



So all was going relatively well... whether or not this child was hit in the face several times. Apparently even that is all good at Camp Calumet.

As the week wore on, I figured no news was good news. And then on Thursday...



Having received the note on Thursday, I realized he'd written it during rest hour on Wednesday - the day of Camp when time seems to stand still for the even-sightly homesick. Somehow, though, I knew that he was going to do fine for the rest of the week.

And he did. 

Having the opportunity to give us a hug and chat for a couple minutes after his performance in Androcles and the Lion, he opted for quick hugs, a "Camp is good" update, and then ran off to Snack Bar. No tears. No hanging on. 

He was excited to see us when we picked him up, and did do a bit of hanging on to his Mama for a while. I didn't mind at all. 

Over the next few days, stories from his Camp Calumet experience were shared. Four square balls don't hurt too much when they hit you in the face. Showering had been avoided until the "Car Wash" which was the only reason his hair was clean. Drama Camp was awesome. Camp Food was great (thanks, Adrien!!!). He sat next to Lily every day when doing gimp. And after that Wednesday rest hour weariness, he found himself too busy and having too much fun and it was time to go home before he knew it. 



The biggest news of all - he's looking forward to returning to Resident Camp next year!

Thank you, Camp Calumet Counselors, CITs, L&S, and Staff for providing such a wonderful environment for a child who navigates the world a bit differently. 


Sunday, July 17, 2016

Z to the 16th Power


It's happened again. 




Another child has reached sixteen-hood.  Sixteen. Old enough to get a tattoo (with parental consent), which is what we're doing today. I'm taking my cute curly headed little boy second oldest son to get his first tattoo on his 16th birthday.

Sixteen.

Zachary is such a joy to be with ... at least most of the time. If he's gotten enough sleep. And if his siblings aren't driving him up the wall. Especially after a conversation with Laila. *insert hearts and smoochy faces here* I love the conversations we have, especially when it's just the two of us driving somewhere and we can not only speak uninterrupted, but about everything and anything. We always end up laughing ... and wondering how we landed on the topics we're discussing. 



I love that Zachary has confidence in who he is and that it shines through when hanging around with friends. He owns his uniqueness and isn't afraid to think or to do things that are "out of the box," Like help Laila with Nail Art class at Epoch Arts Homeschool Co-op ... and keep the polish on afterwards ... or bring his unicorns and rainbows blanket to Camp Calumet. 



In the past year, Zachary has been a zombie, a blacklight reactive wolf, done tech for Dinner Theater and Beautiful Things, agreed to go onstage at nearly the last minute for the Arts Response on Addiction performance, and so much more. I am in awe at the level of responsibility he is willing to take on and the great help he is in all that he decides to do. 

I love his church bulletin doodles, too. 



Happy 16th Birthday, Zachary Thomas Jack Bucka Steyer! 


I was soooooooo tempted to put the bear picture here, but it's your birthday, so I'll be nice.


Thursday, July 7, 2016

Breathtaking


Some days something happens that just takes your breath away.

It was a normal day. I got up, did stuff around the house, caught up on email, went to my rheumatologist's office for my Cimzia injections, met a friend to deliver heart necklaces made by my husband and chat for a few minutes, and stopped at the dollar store on the way home to pick up last minute items for Camp. Along the way I fielded calls from my husband about financial matters and my children about things we needed from the store. Not a stressful morning per say, but a busy one.

With my seemingly endless to-do list on my mind, I pulled into our driveway. I noticed something at the top of the stairs in our back yard. Pulling out my phone, I hoped to get a picture before it flew away. Instead, I got treated to ten minutes of awestruck admiration of this majestic creature. 


I was blessed to be able to share some of this astounding event with Alia. Here's a bit of what we saw.


I am so grateful for these moments of God's beauty amidst the chaos that is my life...the reminders to stop, breathe, and take in nature's artistry.

Wednesday, July 6, 2016

Not the Circus Type


As I absorbed all that was going on in a recent play, something jumped out at me. One of the characters, Ash, entered a once-destroyed but now cleaned up garden. The "misfit body of believers" from the Kingdom Circus was there, asking her if she'd come for the show ... the show for change. Ash responded that she loved to be entertained and asked where she could sit. The response she received was an unexpected one, at least for her...
"No, more like...join. Where do you join?"
Ash's response was pure gold...

"I don't want to join a circus. I'm not the circus type. Have no skills, nothing to offer. Why don't you just show me what you got. Go ahead, entertain me."
This scene popped into mind the following Sunday during the prelude as worship began. You see, it's usually during the prelude that I first read through the bulletin to see if we're singing any of my favorite hymns and if perchance there's an amusing sermon title before centering myself in prayer. I wondered what others do during the prelude. Are they praying? Or are they wondering how interesting or humorous ... and how long... the sermon will be; why the hymns have so many verses; what addition to worship there might be that will delay their departure; or what food awaits them during Coffee Hour... all things I find myself doing from time to time? Perhaps they're mulling over the latest gossip they plan to share after worship. I wonder how likely it is that most are essentially wondering how much they'll be entertained - what the church is going to provide for them today. 
I don't want to join a church. I'm not the church type. I have nothing to offer the church. Why don't you just show me what the church can give me. Go ahead, entertain me
That's what I heard, recalling Ash's lines. Do we (the church...not a building, but a people) gather for worship to be entertained or to praise God? Do we attend worship only to do what we're supposed to or get something out of it... or should we offer something more than money in the offering plate - help build community inside and outside of the church? Are we just going through the motions? Are we creating a superficial church that, should a storm hit, will wither and fall, or are we taking the opportunity to each plant a seed and do the work it takes to help it grow? As Claudia, the elephant in the garden, says...
"It is the planting, replanting, the time taken, the getting your hands dirty again and again that seems to be forgotten. It's the work, the greater mission. The faith that says to keep on planting, keep on working. And maybe someday it will grow healthy and will flourish and maybe produce new seeds themselves."
Perhaps instead of worrying about how much we'll be entertained or what we'll get out of being part of the church... we can consider what seeds we can plant, how we can get our hands dirty, how we can fulfill the greater mission of the church. 

Where do we start? 

Perhaps with prayer.

Perhaps with Beautiful Things (a song by Gungor, look it up!)...

All around
Hope is springing up from this old ground
Out of chaos life is being found in You.

You make beautiful things.
You make beautiful things out of the dust.
You make beautiful things.
You make beautiful things out of us. 

What beautiful thing is the Spirit leading you toward?

Are you ready to join?

Monday, July 4, 2016

Independence Day


Today many will celebrate Independence Day. There will be cookouts, parades, fireworks, and lots of American flags. Today we celebrate freedom.

 
Today is a different kind of independence day for me and my husband. We celebrate our independence in Freedom, New Hampshire at Camp Calumet. We celebrate not just our country's freedom but also our personal freedom. Today is our first full day at Camp Calumet without children. Yesterday we successfully dropped off all five children after Resident Camp, where they will remain until Saturday morning.



We're not quite sure what we're going to do with ourselves, but I'm fairly certain it will involve lots of peace and quiet...the type of peace where you know your children are being well cared for and are having fun and the type of quiet where no matter the amount of noise around you, you know your children aren't making it and don't need your attention.

Happy Independence Day!

Friday, July 1, 2016

Whining




I find it interesting, sometimes a bit annoying, and somewhat amusing that people think I'm whining when I comment on social media that I have a migraine or am having mobility issues or that when I post something like When You Look At Me. It seems like no matter how much I explain, people just don't understand.

When I post these things, I'm mostly trying to point out the humor or the fun I find in living with chronic illness ... or warning family and friends that I may be incommunicado for a while dealing with a migraine or other issue. Or commenting on what a beautiful day it is...and that I got to have a medical procedure that improves my quality of life - a blessing, not a tragedy. 



I find it fun to decorate my crutches. I find it simply a fact of my life that my health has its ups and downs and I'm on a downswing at the moment while I await my change in medication to take effect. I don't see a post of my newest DIY project (decorating my crutches with duct tape) as sad or whining. Just having fun preparing for life happenings. My life happenings just happen to involve mobility devices and getting through life as I anticipate a new medication taking effect. 



When I write blog posts about living with chronic illness and pain ... or about parenting, for that matter... I write them not to whine about my life, but to let others in similar life situations know that they are not alone. To help them see things in a different, and hopefully more positive light.  And to perhaps give some perspective to people who are blessed to live their lives in healthy bodies. 



Trust me, if I was whining, I'd have a lot more to whine about. For example, I, at this very moment, could whine about the fact that I got 2 hours of broken sleep last night between 1:30 and 7AM.; that just sitting here typing this, I have ice on my swollen throbbing knee, heat on my seized up hip, and it feels like a knife is wedged between my shoulder blades; that in addition, my neck hurts, my head is throbbing, my right hand hurts, and my feet are sore; and that although I'm looking forward to attempting a hike tomorrow, I'm scared I'm going to have to turn back after just a few minutes due to the pain.

And I could post similar things every single day  ... and much worse things on bad days. Yes, today is a relatively good day for me, all things considered. 




I'm not whining. I promise. At least not usually. Not until I get to week three of a migraine... or am craving chocolate or cheesecake and don't have any. Then I might just be whining.