Wednesday, November 12, 2014

Saint on the Paint

Nativity Fast is coming up, starting on Saturday (for those of us on the New Calendar).  Now that my children are almost grown, or grown, and far too old for things like this, my head is full of ideas of things that would be so much fun for a mama with younger children to do with them at this time of year. 

I also made Jesse Tree ornaments when my kids were way too old, so I missed the Jesse Tree boat as well. 

But, if keeping up with the Nativity Fast and doing Jesse Tree with your kids every day from now until Christmas doesn't add enough holiday cheer (insanity) to your already busy life, let me give you one more idea: 

Saint on the Paint.

It's a rip off of "Elf on the Shelf" which is a rip off of Advent.  Saint on the Paint at least brings things back in line with where they need to be. 

And what kid doesn't like a good hide and seek game? 

They all do.  Heck, I still do, and I'm about to turn 45! 

So, here's my wee idea:  take a small icon of St. Nicholas, and hang him in a different place each day. 

Each location will have something to do with some sort of alms-giving or learning opportunity.
.  It might be an act of service your child can perform to help another person, perhaps, or something they can collect for the poor.  Or even just some hidden coins near where the saint is hiding so that the child can help fill the alms box at Church, or pay to light a candle.  So, to get you started alms-giving with your child this Nativity Fast, here are ten ideas: 

1.  Hide your saint near the coloring supplies, and spend some time making cards for the shut-ins or sick in your parish.

2.  Hide your saint in the pantry.  Donate something to the food pantry together.

3.  Hide your saint where the fancy dishes are kept.  Offer the gift of hospitality to someone and invite them for dinner.

4.  Hide your saint near the coats or shoes, and then go out and rake someone's leaves. 

6.  Hide your saint in the bathroom and learn about water scarcity in developing countries together. 

7.  Hide your saint in the closet, and donate a coat to the homeless shelter.

8.  Hide your saint near school supplies and then put together some IOCC school kits and send them off.

9.  Hide your saint in the bathroom, and then put together personal items kits (toothbrush, soap, washcloth) for Syrian refugees, via IOCC. 

10.  Hide your saint near the television and watch a movie about a saint or Bible story together. 

OK, hope you have fun.  I'd love to hear if anyone decides to do this. 

Sunday, November 09, 2014

10 Things Chronically Sick Families Need

With Wes having cancer and me having The Multiplicity of Chronic Illnesses (fibromyalgia, chronic fatigue and auto-immune low thyroid, along with a bad back) we are really really feeling the crunch of not having enough energy to go around or get it all done. (Not to mention Bethany's autism issues, Eric's leg pain...etc.)  We are all drained.  And it's pretty obvious that we don't have enough energy to do everything.  Some things have been falling by the wayside, such as Maia's driving lessons (soon to be remedied by way of Kentucky Driving School), or putting a new light bulb in the front headlight of our car.  Some things we just have to say "no" to because we don't have the energy to do them, such as parish banquets, or scouting.  And some things we just have to do even when we feel like crap, like cleaning the house.  Sort of.  Yes, it is possible to vacuum while sitting down.  It helps to have a chair with roller wheels.

So, I was thinking about this.  About us.  About what the real truth is that ought to be said when people ask us how we are and I say "fine!  Wes is still working, glory to God!"  While that is true, the other side of the coin is that he's working but he comes home very tired, and that is all he has energy for.  And he was the person who used to make up for MY slack because of MY illness.  Just because Wes has cancer doesn't mean I suddenly DON'T have all my health problems...because I still do.  I am working as hard as I can to be as productive as possible, but there are limits.  We aren't just a family with a sick parent, we are a family with TWO sick parents:  A sick family. (because the kids aren't all that well, either, for all our efforts of making healthy choices notwithstanding.

So here is what sick families need:

1.  Sick families need help sometimes...maybe offer to come on a Saturday to do some chores for them: Yard work, garage clean up, our house cleaning. Things where they can sit and direct traffic and someone with energy can do the things that require energy. Because they are sick.  And tired. 

 2. Visitors. It gets lonely being sick and not having enough energy to go and do fun things. Sometimes sick persons or families don't even have energy to stay for coffee hour or fellowship after Church. If you have a chronically sick person or family in your parish, call them and see if you can come by for a visit. Visiting the sick is a corporeal act of mercy, long encouraged in the Christian Tradition. If you bring a cake, there might just be wonderful tea and fellowship. 

 3. Meals sometimes. Just because they are tired. All the time. Call up and offer this. Don't ask "Do you need anything?" because that is an overwhelming question. Just pick something and offer to do it. Your sick brother or sister in Christ will feel loved. 

 4. Meals during emergency times, like when someone is in the hospital, for sure. This is a ministry many parishes excel in.  Keep doing it, because it is very needed. Even if the family has competent teenagers, consider that they are also feeling the shock, stress, and overwhelmedness of having one parent in the hospital, and the other parent at the hospital for many hours each day.

5. Extra hugs and being understanding if the tears flow. 

6. To be kidnapped for a night at a coffee shop or a wine bar for a "girls night out" or "men's night out" ....especially if you can do the driving if your friend is often sick and very tired in the evening. Just because someone is sick doesn't mean they aren't still wanting contact.

7. The kids might still like to get together with their friends.  But their parents are sick and tired and don't have the energy to make it happen.  Invite the kids over to hang out with your kids (their friends) for game night, movie night or a sleepover or a fun outing like bowling or mini-golf.  Offer to do the driving.  \

8.  A listening ear.  Seek them out. Let them unburden and tell how it is, whether this happens at coffee hour, or you give a call or send a text...  It might be hard to hear, but it's much harder to live it.  God will give you the grace you need to love a person in this way. Be beside them in their grief.  

 9. Understanding: If your friend is not as involved in parish life as you are, please know that it is not due to lack of love for God and God's people or the community, but is truly due to illness preventing attendance and participation.  Pray for them, and know that they pray for you.  

10.  Prayer.  This might be the hardest thing AND the easiest thing all at once.  It helps a great deal traveling through cancer or chronic illness to know that we are being prayed for. 

Who are the sick families or people in YOUR parish? 

Sunday, September 28, 2014

A Year In

In a couple of days, we will officially be one year in to our cancer journey.  September 30th, 2013 was when Wes had his seizure that we thought was a stroke.  We went to the ER and they found a lesion on his brain.  For three days he was in the hospital with a team of doctors trying to figure out why a young healthy man such as Wes would have a stroke.  Only one doctor said "that's a brain tumor"...which of course was confirmed a month later on a follow up MRI...and then in November we got the official diagnosis after the biopsy...but I count September 30 as the beginning of our Cancer Journey.

And Wes is a walking miracle.  He has the most aggressive type of brain cancer there is (Glioblastoma) for which there is no remission and no cure...and so far he is still able to drive, program, work, talk, ...all that normal stuff.  He is himself...with side effects from the chemo.  This is the cancer that has a 14 month median survival rate WITH TREATMENT.

So...all that to say:  Wes is a walking miracle man, and he's doing so well, thank God.  The future is in God's hands, however long He decides to give him.

Me, on the other hand:  I am a wreck.  What if Wes lives for another ten years?  That would be a wondrous and fantastic miracle indeed, but I cannot live with this level of stress for another ten years.  I have been in crisis mode for a year and it is WRECKING ME.  And I don't know how to settle in for a longer journey.  I have gained 30 pounds, I am weak, I am wobbly, I have very little energy, I cry all the time, I am scared and I am grieving.  And from my perspective, this journey SUCKS.   I'm glad Wes is doing OK (he has much less energy than he used to, is tired a lot and struggles in that way, so it means many times nobody in the family has any "get up and go" oomph...dont' get me wrong...things ARE different, even though he is still alive, talking and working.)  But I am a wreck.

I need to figure out how to settle in for the long haul, and not just for a short "oh no he's gonna die in a year" crisis cancer journey.  And quite frankly, I don't know where to start with taking care of myself.   Everything costs money that we don't have in our budget, thanks to that lady that totaled my van last year and the new to our budget car payment that resulted. One big result is that we are now a one car family, and that we gave up our YMCA membership where I was going to the pool.  

I feel like I need to find a balance and I am so off kilter I don't know where to start.

In a perfect world, I could get a professional massage a couple of times a month.
In a perfect world, I would be able to get back into the pool at the YMCA and swim or do movement in the water that would not hurt my hip.
In a perfect world I would be able to find someone to help me figure out how to balance exercise (and what type) to get stronger with fibromyalgia pain so that I don't keep spiraling downward and getting weaker and weaker. (last winter I ended up in the ER from post-exercise fibro pain when I tried to take up lifting weights again starting w/ 1 pound, it's a THING that I just can't push through.)
In a perfect world, I would be getting better pain management help than I do.
In a perfect world, I would tighten down on my eating and give up the sugar again but...SPOONS...dieting takes energy and I have been SOOOOO overwhelmed just the thought of dieting makes me want to cry.  I try for a week here and there...and then fail fail fail.
In a perfect world I would be doing the exercises to help my hip.

In real life, I am drowning.  glurblegrrrblegurble.

Sunday, August 31, 2014

The Other Side of the Tapestry

Today during Divine Liturgy, I was thinking of my oldest daughter visiting Holy Dormitian Monastery this weekend, and how she wants to be a nun, but how she also struggles with mental health issues and autism. I was remembering when she was 13 and was hospitalized catatonic and out of touch with reality. I then thought of my own journey with ill health that I just can't seem to fix. And then I thought of my husband with deadly life shortening never-goes-into-remission brain cancer, and my son with chronic leg pain...and I asked "WHY Lord? the load is too heavy! Why so much on me, on us?" and the answer came with this thought: look how tender-hearted it has made you. Look at how much you lean on me. Look how much this has humbled you. Remember that arrogant young woman you used to be, so full of pride? Remember how jaded you were after you graduated from Seminary? Remember how you told me you wanted to become holy? And now look at you broken, so tender and fervent and the opposite of jaded.....the cross is the way." Today I caught a glimpse of the "other side of the tapestry of life."

Saturday, August 30, 2014

A Slice of Life

I am determined to start blogging again. About the ordinary things, about life, and also about Wes' cancer journey, and my journey with him.

It's hard.  I'll start with the cancer stuff.  He's doing pretty well.  He just had his seventh monthly chemo treatment (usually the protocol stops at six of those) and since then, he seems to have developed a new allergy.  He already developed an allergy to ivory soap, and now there is a food he is reacting to...hives, itching, rash.  It's either apples (his lifelong favorites) or coffee.  Neither will be easy for him to eliminate.  Obviously his system has reached an end, or at least a new level of not-loving-chemo.  He's done so well for so long.  We have much to be grateful for.

It is difficult to know what the tumor is doing with the MRIs only every three months.  Just a couple more weeks, and we'll have another one, and then we will get a snapshot of where we are at currently.  He's more tired than ever, and is sad and depressed, unmotivated.  The grass in front of our house is getting quite tall.  I keep thinking I can get to it, but I have not done it yet, either.

I still struggle with low energy.  I guess I always will.  I get up and go and do and then hit that wall.  I have so many ideas and projects that I want to do and implement, but I run out of energy and am utterly spent.  I'm doing better than I have in the past, but not as well as I want to be doing or need to be doing.  I need to exercise more, but it doesn't ADD to my energy it's hard to be motivated to do it, even thought I am very unfit and it would benefit me least in theory.

My two younger kids are enrolled in High School now.  They are both juniors.  Our Homeschooling days are over.  Dare I say "at last"?  AT LAST!!!!!  I was not loving it the past couple of years.  I could kiss all their teachers for taking that burden off of my shoulders.  My two older daughters both got their GEDs this past summer.  Maia is working and learning to drive.  Feels like another item on my to do list.  She bought herself a car with her own money.  This mama is proud.

B is at Dormitian monastery this weekend.  She rode up with a friend from Church.  I hope their time is blessed.  It is her first visit to a monastery.

So, that's the macro overview.

Today was fairly ordinary.  Got up, coffee, breakfast, know the drill.  Wes and I went to the Farmer's Market to pick up our weekly milk and egg order from our farmer.  While we were there we sat down on a bench together and listened to two guys playing gospel music.  I wish we could have heard more than two songs, but it was almost noon when we got there...time to pack up.

Fortunately for us, our car ran quite well there and back again today.  Last week, the gas pedal stopped working and I coasted, going slower and slower and slower for about TWO MILES, across the Sherman Minton bridge (uphill until the top of the bridge and then we started picking up speed again).  Last week I'd estimated the distance to be half a mile, perhaps three quarters...but no, today we measured it, and it was two miles!!!!  So last week we did the tow truck, walk to farmer's market and rent a car for two days rigamarole, and it turned out to be the car's COMPUTER needing an upgrade, of all things!!!!!  Thank God it was still under warranty!  I'm glad there were no "adventures" going to the farmer THIS week.

And then this afternoon I decided to clean and reorganize my work space in my room.  We moved some furniture (just a little bit) and I cleaned and cleaned and cleaned and cleaned some more.  Several bags to go to the thrift store and at least one very full bag of trash.  It looks great in that corner now, almost (still have a bit more to do maybe tomorrow or Monday) and I hope it will make it easier for me to work on my little sewing projects and etsy shop orders.

I wish I had more energy.  Life with no energy feels lonely sometimes....often I am on the sidelines, peeking in to other people's fun lives via facebook or blogs or whatnot...and I'm just sitting here exhausted, and my husband is sitting there, exhausted, and it seems like we never DO anything...except go to the doctor and pay medical bills.

And so that, dear friends, is a slice of my life.  I sure hope I can make it to Church tomorrow and not be in too much pain or fatigue to hold myself upright on a pew.  (Yes that happens.  Sometimes even sitting is too hard).  Geeez I sound depressed.  Sorry. 

Wednesday, May 21, 2014

Family Update

Wes is doing fine.  He's working, etc.  June 4 he will have another MRI and on June 6 we will find out the results.  I'm nervous.  That's our wedding anniversary.   Setting aside the idea of the possibility that bad news will ruin our anniversary celebration.

Week before last (or was it just last week?  I forget), I saw a neurologist.  We are trying to figure out why my legs get so weak and wobbly and shaking.  So she is sending me for an MRI (tomorrow) and to see and neuromuscular specialist who will do further testing (something about an enzyme biopsy, I think).

Last Friday I also had an appointment with a Physical Therapist to find some exercises I could do to relieve my shoulder pain.  I also mentioned my leg issues to her.  She did a work up on me, and come to find out, my pelvis is twisted!  The left side of it, is tilted forward an in.  So. Not. Good.  This might explain my weird left leg issues and much of my back pain as well.  The exercises she gave me to start correcting this issue feel miraculous in the relief they give.

Today I took Eric to see a Pediatric Rheumatologist.  This appointment has been very hard to get and a very long time coming.  She poked and proded and asked a million questions and is sending him for genetic testing, to a cardiologist and to an ENT for an evaluation and to get his lower back X rayed....because she suspects Marfan's Syndrome, or a genetic abnormality in that cluster of connective tissue disorders.  Too early to know for sure yet, but he does have some of the physical traits...just not in a super duper pronounced way.  Learning this possibility, and adding these appointments to my calendar, and imagining the doctor bills has got me very stressed out.  I feel like I have been punched in the gut. 

Maia got her Learner's Permit on Monday, so she is going to have to go to driving school soon, and buy a car soon.  She has to hold her LP for 180 days before she can go for her road test.  I hope she can meet that goal.  It will be a help to have another driver in the family.

Bethany is still dealing with boatloads of anxiety and depression per usual.  And Ariana is also dealing with some new anxiety and depression issues.  Go figure.

On Tuesday nights our family goes to Gilda's Club, which is a cancer support group.  It is a wonderful community, and there's a group for the kids, a group for me, and a group for Wes.  Just what we need at this time.

I feel very disconnected from my parish.  It is hard to make friends.  I am lonely.  So often I am sick and tired, and I can never do any of the extra things.  Besides, often Bethany needs me to rescue her during Church.  It is a sensory overload for her, and she can only take so much.  This is very difficult.

Next school year Eric and Ariana are going to enroll in High School.  I don't know yet what grade they will be in.  I have a window between June 13 and 25 or so when I can take their records in and get them registered.  I don't know yet what grades they will be in.  Ariana is having loads of anxiety about this change in her life.  Please pray for her.  Eric is too, but he won't talk about it.  He just plays stormy music on the piano.  I am having anxiety and stress about getting their work graded and transcripts made.  Please pray for me. 

Maia plans on getting her GED, and then trying to work more and set aside some more funds, aiming to enroll in community college or UofL in 2015.  

Wes is super busy and content at work, glory to God for that.  He has nightmares about losing his ability to speak.  Please pray for him.

Me?  I am putting one foot in front of the other, but feeling very very much on edge.  This is hard.  This is SO MUCH STRESS on my plate, and there is absolutely nothing in the world I can do about it.  Dear God, please take it.  I don't want it anymore. 

Thursday, May 01, 2014

No more putting off the dreams....

 Wes accepted my invitation to go to the Jane Austen Regency Ball (and festival) in full Regency costume of course. I'm a very experienced seamstress, so I have the mad skills...I think I will need a day dress and an evening gown. He will need a linen shirt, breeches, waistcoat and a coat...I'm going to be one very busy lady unless I can find a place to rent him a decent costume!!!! (I've wanted to go for years but it was always put off as "someday" I realized that we are out of time, and "someday" has to be this year. 

Jane Austen Festival, Louisville