A grandfather's legacy.

We are all leaving a legacy. Is it a good or bad one? My grandfather passed into eternity this morning. He was turning 90 in a month. He was a preacher and he preached with his life not just his words.

When I was probably 13, I went to spend a week with he and grandma.
His sermon is one that to this day I remember.  It was about rose colored glasses. How that God sees his children through rose colored glasses.

He spoke about how when we came to Christ, and were washed in the 
blood that the Father did not see our old sins. Because he saw us through the blood of Christ. I'm not sure why this particular sermon sticks in my
memory. I do know that when the accuser comes to remind me of how often I fail... this is what I fall back on~ that I'm forgiven and my heavenly father looks at me through rose colored glasses.

Thank-you Grandpa. Thank-you for showing us a life well lived in Jesus.

Merry Christmas and Happy New Year!

For the past couple of years it has seemed as if January couldn't come soon enough... I was ready for a new year.  Funny this year has probably been the hardest in at least the past twenty two years.  And although I am not totally sorry to see it go I can't say it was a bad year either. Hard yes~ bad well not really...

You see although it has been tremendously hard year, we have been
blessed beyond measure. Mike's cancer, the financial issues that ensued from that, other various trials like little foxes stealing grapes threatened our faith and sanity at times. And yet by God's grace and mercy we are still standing. Over and over again God has shown himself faithful, even when we were faithless, providing in ways we couldn't even imagined.

I am often like the children of Israel wandering in the desert, I forget too quickly the miracles God just performed. I am learning to trust 
my deliverer. This year has been a long lesson in learning to trust Him.

Tomorrow is another milestone. Cody turns eighteen. Eighteen! Ten years
ago we were discussing heart valve replacements and tomorrow he's eighteen. We still haven't had a miraculous healing ~heck we don't even have a  for certain diagnosis.  But I can say without a doubt after this year especially that God has a plan and He keeps his promises and I know he has something for Cody to do. And Mike and I are blessed to be a part of that plan.

One of those days....

It's been one of those days. We had snow this week. We had almost as much snow as we had all last year in the beginning of this week. Don't get me wrong it's beautiful and I'm sure the water table could use it but ugh!

So this week we found out that neither Hannah or Lucas's snow boots fit, the water proof gloves have disappeared, and only one of them has snow 
pants. Neither one one will come in until everything is soak and frozen
... and arthritic joints don't respond to well to that. I keep having  to say 
'you can go outside but,you can't come in and cry later if you overdo it'.

Mike's mass seems to be a complication of his surgery. Where a lymph node was remove it seems he has accumulated some lymphocytes which have become infected. So he is to have six weeks of antibiotics and if that doesn't clear it up it will have to be drained.

I am pretty exhausted. Lucas has started not sleeping again since all this with Mike. So a couple times a night he is awake... not good for him or me. Makes for a hard school day also.  The one thing that was nice about the 
snow days per say is that I got to do school with the younger ones like normal... nowhere to run just a cozy day at home with school.  Well Monday was a rough day but that is a whole different story.

The older Lucas gets the more his Dysgraphia is an issue. Disgraphia is
a learning disability that affects writing, which requires a complex set of motor and information processing skills.  It can lead to problems with spelling, poor handwriting and putting thoughts on paper. We thought an adaptive technology piece would level the playing field for him, but so far speech to text has been more trouble then helpful. He is so bright we just
need to find a way for him to be able to express himself in writing.


To those of you uplifting us in prayer~ I just want to say thank-you so 
much! We can feel them! And we continuously need them.

I am lighting a candle instead of cursing the darkness.

Second Samuel 22 verse 29 says ' You are my lamp, O LORD; the LORD turns my darkness into light.  I read the other day that gratitude trains the eyes to adjust to the dark.  I believe this means God’s word lights the path, but sometimes only enough to put one foot in front of the other. We can’t see the big picture of what is going on around us. We can only see what God has chosen to reveal to us.

Sometimes clinging to faith is lighting a candle instead of cursing the darkness.  Faith is like light... darkness cannot exist where there is light and doubt cannot exist where there is faith.  In this marathon of life we need the endurance that faith brings.

November for us has been a month of illnesses. Infections both viral and bacterial have hit hard.  We started out celebrating Mike having two psa's of zero ended with them finding another 4cm by 4cm mass.

(We go Tuesday to have that checked out)

I could (and I would be lying if I didn't say I have not been tempted) to give into despair, crawl into my bed pull the covers over my head and stay there. To say it's not fair!  

I took Rachel back to school today. I had the privilege of having Lucas (my 10 year old) as my copilot. He literally talked non stop for 2 hours on the way home... but I was blessed to hear his thoughts on quite a number of topics. :)

One of the many things he shared with me was how life seems harder when your  Christian.  Because the world isn't the way God created it to be and so we just don't fit.  In his 10 year old way he was speaking deep truth.  Bad things happen because this world is a fallen one. Things don't make sense and 'we don't fit'.  But we are not without hope... 

2 Corinthians 4:9 says ' we are persecuted, yet not abandoned; knocked down, yet not destroyed.' And I am lighting that candle and clinging to it's truth.

Hello November ...

Things have been crazy busy here!  It's hard to believe that we have been in school for three months... that come Spring we will have another soon to be college student.

I am loving my job working with autistic kiddos. Our school schedule is
finally adapting to our schedule changes. Mike is doing a wonderful job 
co-teaching!

This is my favorite time of the year... I absolutely love Thanksgiving and Christmas. I love the emphasis on family, gratitude & joy. We have so 
much to be thankful for this year.  It has been a tremendously rough year. 

It's easy to become so focused on the negative things that we lose sight
of the positives.  Just today we took a couple hits.  Mike has a pretty bad infection on his leg from what we think was a spider bite.  And after years 
of dealing with the kids rheumatological issues and wondering if my issues were related...  I received my own tentative diagnosis Still's disease. From
the cancer fight and subsequent issues our finances are a mess. It is easy 
to become downcast.  But I am encouraged because God has proven 
Himself to be faithful!  

I love this quote by H.U.Westermayer~ The Pilgrims made seven times more graves than huts. No Americans have been more impoverished than these, nevertheless, set aside a day of thanksgiving. ~It reminds me that thankfulness is so very important. Because it takes our eyes off 
ourselves and puts them on God.  It reminds us how in the grand scheme
of things our God is big and our problems small, not the other way around.

Psalm 27:13 says ~ I remain confident of this: I will see the goodness of
the LORD in the land of the living.  Thanksgiving isn't one day a year... 
it's a way of living everyday of the year.

What are you thankful for?

I'm so glad I live in a world where there are Octobers

I'm so glad I live in a world where there are Octobers~ Anne of Green Gables

I know I've said it before but I adore fall. I love the changing colors of the leaves and the crispness in the air. I love that we can snuggle under a throw on the couch with a cup of tea and get lost in a good book.

However, in our house fall brings with it some challenges. Chilly mornings are hard on joints. Damp days can be the cause of great discomfort. School work can be a bit more challenging with stiff fingers.  Most mornings it is a struggle to get out of bed.

We have found those electric throws are wonderful! Plug them in and wrap up in them for morning devotions helps with the stiffness. Warm showers help too and sometimes an ice pack does the trick.  Having a positive attitude is a must.

Cody has had a great deal of difficulty in the past month some new symptoms have developed which sent us to Gastroenterology... which resulted in an appointment for an endoscopy and colonoscopy. Also with the government shut down it would appear that any trip to the NIH is on hold. Hannah's steroid shots for her jaw helped a bit but her ankles and knees have been bothering her so much we are switching from Methotrexate to Enbrel. Lucas has a great deal of inflammation in his sacroiliac joint and hip so a stronger NSAID is in the works for him.

 So although fall is beautiful it is an adventure at times. Of course joint pain of arthritis is not limited to fall we do tend to see more flares during the change of seasons. These challenges are exhausting at times... slow mornings and tired afternoons. Fall is the beginning of our Thanksgiving season and believe me it helps when you don't feel good to concentrate on those things you are thankful for. To remember 2 Corinthians 4:17 For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,

Amazing Grace

How beautifully leaves grow old.  How full of light and color are their last days.  ~John Burroughs

The past three weeks have flown by so quickly. This year we decided to
start the day off with family devotions.  At 7:30 three sleepy headed 
kiddos make their way to the living room and we read a passage of 
scripture, have a short devotional and pray as a family. It has been 
fantastic! I love to hear my children pray especially for one another. 
Now just to keep it real those same kiddos will be arguing with each 
other at the breakfast table, about 10 minutes later, so I'll take what
I can get. :)

One thing I'm certain of is the enemy of our souls does not like us having family devotions. It has been amazing the additional challenges our family has faced since we started.  The first couple weeks of school have challenges all their own...but we've had some special ones of late.  Last 
Tuesday after a particularly good morning of school. I walked downstairs
to change the laundry... and wait is that water I see...

No not water.. it was sewage! The float switch on the ejector pump failed
and my lower bathroom/laundry room and hallway to and part of the family room was covered in sewage.  Then a day or so later I go out to the van and it starts sputtering and carrying on.  The wires connected to the wire harness all melted together. Yep all kinds of special challenges.

I would like to tell you through everything I have been calm,cool, and collected. A paragon of how to trust God in difficult times ~ but we're 
keepin it real remember.  I am learning though...

It has been a amazing lesson for us in God's faithfulness. It has been a
way for us as a family to present our needs to Him, to ask to see more 
of His glory and to see that He is still working, and then to see His
provision.

We covet your prayers we still have a lot to do and some needs to be met.

But isn't His grace amazing!

First days....

We've had a busy couple of days.... First day of school Monday for the Cody, Hannah, & Lucas. Dropped Rachel off today and her first day is tomorrow.  Sometimes I'm not sure how we got here. Time seems to go by more quickly than I'd like.  This is our 12th year of cyber homeschooling... there are days I think I have this figured out and others I think why am I doing this?

This year I did have it together enough to take pictures:

                               A senior, 7th grader, & 5th grader.

Dropping Rachel off this year was harder and easier at the same time. Last year was fraught with emotions and anxiety (on her and our parts). This 
year she was confident and excited. Me, I was proud! You see we planted with the harvest in mind and I can't wait to see what the Lord does in her life.

I was not on the ball enough to get a picture of Rachel at school. I did however find this picture from nineteen years ago. Nineteen years ago

I never in my wildest dreams thought about the time when I would drop this sweet babe off at college.

Here's to a fantastic new school year! 

Changes

“Two sounds of autumn are unmistakable...the hurrying rustle of crisp leaves blown along the street...by a gusty wind, and the gabble of a flock of migrating geese.” 
― Hal Borland

This morning when I took the dog out I noticed the leaves on the dogwoods are turning and the geese are overhead. We are entering a new season, as well as a new season of life. School is starting for another year and the children are getting older.

No longer do we have the chaos of little ones. Instead we have the growing pains of independence seeking tweens and teens. Getting ready for the start of school is a whole new ball game... less physical and more mental prep so to speak.

Rachel is getting ready to head back to Eastern to start her sophomore year. Less nerves this year and less list frenzy. Cody is starting his senior year. He is trying to discern what God's plan for his life. Hannah is starting 7th grade and Lucas 5th... when we first started this journey Hannah was a wee lass and Luke not even born.

This has been a busy month. Because of the business of getting Cody into the NIH, the plan was quitting my position and substitute teaching. However, I was blessed with the opportunity of a part time TSS (Therapeutic Support Staff) position and we felt that was a better option. So not only are we getting ready for school but getting ready for the change that this will bring to our school schedule. Blessedly we will have the first two weeks of school to get in the swing of things before any big changes occur.

Mike's parents were able to visit from North Carolina for a couple of days which was a huge blessing!

And Cody had his first Actemra infusion. The difference afterwards was amazing. After weeks/months of constant pain he was like a whole new kid. A week later however was disappointing. On Monday he seemed to be coming down with a cold and Tuesday we spent the day at a nearby zoo and caverns. By Wednesday he was having difficulty moving. Another med issue is for awhile he has been on Cymbalta for pain~ he has been concerned of late that his mood swings and agitation are side effects so we stopped the Cymbalta for now. Hopefully this small flare is from the cold and he will recover quickly.

As we move ahead next week into a new season of our lives I am clinging to these verses:

                                   Psalm 27:13&14 
         I remain confident of this, that I will see the goodness of the Lord!

24 days till school starts?? Where did summer go?

I'm not exactly sure where July has gone.  It seems to have came and went far too quickly.

We have 24 days till school starts. Normally at this time of year I am filled with excitement about a fresh new start to school... this year... well I'm having a difficult time.

This calendar year... so far has been such a tumultuous one. Mike's PSA level was 0 on July 2nd~ Praise God! I don't think I'd really taken a breath since his diagnosis February 12th.

Cody is entering his senior year of high school... although it seems like just yesterday he started kindergarten. He has not had the best summer- pain wise- so the goal is to get his pain/flares under control so going away to college next fall (next fall?? really am I old enough to have 2 college students?) is a viable option for him.

It seems his run with Orencia is coming to an end and a new infusion medicine is in his future. Which also means starting infusions at the hospital again instead of home ~ sigh~.

I have been feeling emotionally fragile these days... it seems as if the slightest thing can bring me to tears. But one thing I have been learning this bitter and yet sweet year is that God is gracious, merciful, and patient as He teaches me. I am learning that I don't have to have it all figured out because He can and will redeem my mistakes. And most importantly- a little grace can go a long way. 

What does it mean to persevere ?

1. persevere(Verb)

 To persist steadfastly in pursuit of an undertaking, task, journey or mission in spite of distraction, difficulty, obstacles or discouragement

Tonight for the second time this weekend, I have left the house in tears. I work nights ...Thursday, Friday & Saturday nights... I have done this coming up on a year now. I left the house in tears because Lucas was in tears. The last 4 months have been miserable. Since Mike's cancer diagnosis in March, Lucas has been struggling with a great deal of anxiety.

Realistically we have reasons to be anxious... financial, physical, etc. However, Lucas starts being anxious that he's going to be anxious and ends up making himself physically ill. It is very hard to walk out the door for 10 hours while the house is in chaos. Lucas said to me earlier tonight, "Saying you trust God is easier than actually trusting Him Mom", don't we all know it!

I am the first one to admit this job is most likely my Ishmael attempt.  What do I mean?  God promised Abraham that he & Sarah would have a son, but Abraham didn't wait for God's provision and had Ishmael with Hagar (Sarah's servant) ...which we all know has caused great grief in the middle east. And this job while until recently has helped keep our house... it has caused great grief.

So tonight I have been playing Lucas's words over and over in my mind. How do we actually trust God and not just say we do? I believe the answer lies in perseverance.  I believe God can and will show up.  My experience has been He is never late and always on time.  But waiting has never been my strong suit...

You can't make this stuff up...

Life is amazingly crazy at times.  Yesterday was one of those crazy days. Yesterday morning as I sat doing my devotions, Mike calls me into the downstairs bathroom and I was met by the lovely scene of sewage backing up all over the floor.  Thankfully we were able to contain it to the bathroom until the plumber came (ejector pump was clogged by part of the float).  A short while later I was across the street talking to my neighbor... we noticed a huge snake under my car... that proceeded to climb up into the engine of the car.  I was telling people it was 3 foot long, Mike corrected me later it was actually 4 foot long...ugh! 

I have been struggling with all the craziness in my life at late. Yesterday was a big struggle to not descend into the trap of discouragement.  I am fighting discouragement because life doesn't seem to have any down times lately.  Life has been stressful constantly since well I can't remember when.  And the financial stress is a bit overwhelming at times. The last thing we need financially at this point is big plumbing bill.  Trusting God to provide financially is difficult.

Today Mike goes for his first PSA test post surgery and I would be lying if I didn't admit I am on pins and needles.  He has two weeks back to work under his belt and is doing well. He is tired at the end of the day... getting use to being on his feet for 8 hours again.  Overall though I have been pleasantly surprised at how well he is handling things, even sharing things with others that I would have never thought he'd share.

Thankfully we have hit a more consistent weather temperature of late.  So episode of joint pain have been fewer. Unfortunately Hannah's disease process is worsening and we had to make the decision to add sub- q injections of methotrexate to her therapy.  Also her TMJ issues are worsening so she is scheduled to have more steroid injections in her jaw on July 5th.

Many have asked how you can pray... just knowing your praying is a huge encouragement.  If you could pray against discouragement & fear would be fantastic and that God would show His provision we would greatly appreciate it.

Ups and downs.....

The weather here has been a bit fickle as of late... last Tuesday it barely reached 73 degrees and then we had 4 days of temps in the 90's, next week its suppose to be back in the mid 70's.  The ups and downs of spring heading into summer I guess. 

Ups and downs seem to be a big part of our lives right now.  The weather has caused a bit of joint pain issues, Lucas has been complaining of jaw pain and Rachel has been running a temp for about a week.  Mike is recovering well
although some days it doesn't move fast enough for him. So yeah lots of ups and downs. 

May ended up being a brutal month. I had really anticipated the surgery being
the end of the scary craziness.... actually it only continued and added extra dimensions with recovery, sorting out short term disability and the loads of medical expense. So here's to hoping June will be better!

Along with the craziness of life right now~ Lucas is losing his best buddy on our circle.  So in a temporary lapse of sanity we/I gave into his request for a kitten.
Yes just what we need right now a 3rd cat :).

                                                         
                                                                   Little Man & Harley
"The greater the difficulty, the more glory in surmounting it. Skillful pilots gain their reputation from storms and tempests." ~ Epictetus