Thursday, January 29, 2015

About Fear

Today I woke up and my emotions and thoughts were back in that fearful and negative place where I am panicked about the future, about the increased cost of living, the cost of illness (I stare at my med bottles wondering which one I could do without to save money) and of course underlying and overshadowing everything, Wes' cancer. 

I felt stressed.  And rather helpless.

Due to increased insurance costs, our budget is not quite what it once was.  Lets just leave it at that, shall we?

And it is grocery day and I knew exactly how much was (or wasn't) on the bank account. 

I felt stressed.  And rather helpless. 

At some point in my morning of putting one foot in front of the other (oh how I wanted to be working in my etsy shop to try and earn some money) in which the demands and needs of my kids took precedence over my desires I had a very very clear-as-a-bell thought: 

Manna in the Wilderness. 

I thought of how God gave just enough manna for that day, and double on Fridays so that His people could rest on Sabbath. 

I thought of the fact that I DO have what I need to buy groceries today, because I have a gift card in my wallet that someone gave us.  (and so buy groceries I did). 

What will I do when our budget still doesn't work, and the gift card is gone?  Manna in the Wilderness:  Stay in the TODAY. 

That's been the biggest lesson I have learned so far on this cancer journey, is the importance of staying in the present, and deliberately practicing gratitude.  It is the only way to stay in that place of trust in God...in this moment I have all that I need.  In this moment, God is with me.  In this moment, I can feel love. 

Of  COURSE I can't sense God's presence or receive that Manna in the future because the future is not yet the "now".

Psalm 117: 5ff. (118) says:

Out of my distress I called on the Lord;
    the Lord answered me and set me free.
The Lord is on my side; I will not fear.
    What can man do to me?
The Lord is on my side as my helper;
    I shall look in triumph on those who hate me.
It is better to take refuge in the Lord
    than to trust in man.
It is better to take refuge in the Lord
    than to trust in princes.

Monday, January 26, 2015

Disney Lied to Me!

Disney lied to me!

 I was taught by Snow White that cleaning first a castle and then the dwarves' house would get me surrounded by friends, a jam session and a long nap afterwards...still waiting on the musical friends and the nap. But they got the part about naps being disturbed by unwelcome kisses right....

Cinderella...again with the cleaning! I was taught by Cinderella that if I did all the household chores, someone else would do my sewing for me and I would have energy to dance until midnight. It just isn't so! (pardon the pun). They lie!

Pocahontas...I can't EVEN. She didn't seem to HAVE chores.

Beauty and the Beast: that being a bookworm gets you unwanted suitors...Ha. Not unless by "unwanted suitors" you mean a few extra pounds.

Little Mermaid: That there's room for collecting lots of stuff. Not EVEN.

Princess Jasmine: HOW is her outfit and palace NOT covered in Tiger fur????? because I have a couple of cats whose total size and weight do not equal THAT cat and I am NECK DEEP in cat fur. Just sayin'. [and speaking of cats: see note above about unwanted kisses].

Sleeping Beauty: That I would get a NAP for my birthday present. SO did not happen. I'm still waiting.

Rapunzel: That there's no such thing as vitamin D deficiency.

And I will NEVER be convinced that Elsa wasn't just going through Menopause.

Thursday, January 01, 2015

2014 Family Newsletter Post

2014 has been a year of God's mercy and grace.  Of course we have been reeling from Wes' cancer diagnosis which we got the day before Thanksgiving of 2013.  We have kept on walking though, and started going to Gilda's Club, which is a wonderful cancer support organization.  By late September, early October (the anniversary of his seizure that we thought was a stroke) I started getting my feet back under me.  That first year felt like I was falling. 

Bethany and Maia got their GEDs, and Eric and Ariana got enrolled at Jeffersontown High School as Juniors.  Maia is on the cusp of getting her drivers license and she bought a car with money she has earned from her Library job. 

2014 saw ZERO growth in Wes' tumor, which is wonderful.  Wes said something rather profound the other day:  "I know I'm TAKING chemo, but I'm not TRUSTING the chemo to keep me alive.  I am trusting God to keep me alive."  And glory to God, Wes is still functional, normal, working and everything. 

My own health has been improving, as I found out at the beginning of December that I have asthma!  This is due to lung damage from when I had pneumonia spring of 2013.  I had been describing my health as "I feel like I am at the bottom of a pit (fitness-wise) and I can't climb out."  Well, now that asthma is being treated, I can exercise again and I feel so much better, thanks be to God.  As far as it goes, my fibromyalgia and thyroid issues are as well managed as they can be.  I have my ups and downs, but God seems to give me as much energy as I need, and as much rest as I need (and on some days as much HELP as I need) to get through the work of each day.  U have the most wonderful helpful young adult (and almost adult) kids.  I am grateful for each of them. 

Eric is amazing with his piano playing.  Ariana is growing in her art skills, learning water color and inking and cartooning in her advanced art class in school.  Maia is working faithfullly and hopes to start college Fall of 2015.  Bethany struggles with her neuro issues and has her ups and downs, but her fiber art skills continue to improve (she is amazing) and she is a joy to be around.  Please pray for my kids as they are stressed and depressed about Wes' cancer. 

Did we go on any fun vacations in 2014?  Of course not.  Sick people don't get vacations.  They get medical bills instead.  God provides. Oh how abundantly God provides. 

And so we continue to live by or motto:  God be Glorified. 

Wishing you and yours a blessed 2015. 

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 dumbells...so, 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."