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When reality smacks you in the face…

The other day was World Cancer Day.  Cancer is a dreaded word, but a known one (unfortunately).  I’ve had family members battle various forms of cancer.  It runs rampant in my family.  I know it.  I know what it does.   I know what the treatment options are.  Dementia/Alzheimer, I know about those too.  I know what those do, what their treatments (or lack thereof) are.  But Fibrodysplasia Ossificans Progressive (FOP) is so rare that no one really knows what I’m talking about.  However, as one person just mentioned to me… it is used in horror shows.  Well, that’s comforting.  The only knowledge of this is through horror or the label “stone-man”.  But this is my daily life with my husband because just a few months before our wedding, this was the label placed upon him by the VA.  What followed were constant phone calls from doctors wanting to study him, to run tests on him, to poke and prod.  He on the other hand, said not just “no”, but “h— no!”.  He didn’t want to be a case study.

We went through our wedding and the next two months in that newlywed bliss and denial of this disease.  We’ve made our house a home for not just us, but the three kiddos as well.  We are a family.  And then reality hit this weekend.  We could no longer be in denial, we had to face the cold-hard truth of this disease.  And it’s ugly.

To give you a better understanding, here are some facts pulled from the glorious internet:

  • Fribrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.”
  • Any trauma to the muscles of an individual with fibrodysplasia ossificans progressiva, such as a fall or invasive medical procedures, may trigger episodes of muscle swelling and inflammation (myositis) followed by more rapid ossification in the injured area. Flare-ups may also be caused by viral illnesses such as influenza.
  • Specifically, this disorder causes the body’s skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible.
  • In the affected areas, bone slowly replaces connective tissue; in addition to skeletal muscle, bony growths also occur in various tendons, ligaments, and bands of fibrous tissue that support muscles (fascia). The neck, back, chest, arms, and legs are usually the first areas affected. The disease may eventually affect the hips, ankles, wrists, elbows, shoulders, and/or jaw as well as the abdominal wall. In some affected individuals, the progression of bone development may be rapid; in others, the process may be gradual.
  • FOP may eventually result in complete immobilization. Affected individuals may experience progressive pain and stiffness in affected areas, complete fusion of the spine, and/or pain in certain areas of the body caused by abnormal bony growths that compress the nerves in these areas (entrapment neuropathies). As mobility begins to deteriorate, affected individuals may exhibit an increased susceptibility to respiratory infection or right sided congestive heart failure.
  • There are no known effective treatments for FOP. Certain types of drugs have been used to relieve pain and swelling associated with FOP during acute flare-ups (most notably corticosteroids) and non-steroidal anti-inflammatory medication between flare-ups.
  • No treatment exists, but a clinical trial is currently underway

Comforting, no?  So now do you see what we are up against?  An extremely rare disease that is usually genetically present when you are first born.  No, Daniel does not have the genetic signs of FOP.  I do not believe he was born with this, and have my theories of how this has occurred.  But I’ll save that for another day.

Here’s what we do know right now:  it has already begun in his neck.  The x-rays show it, the doctors have confirmed it.  His neck is ossifying and it is painful.  The new growth is pressing upon his nerves and I have to watch as he goes through full-body muscle spasms and see the pain in his eyes.  I’ve had to endure the “I want you to be happy after all of this” talk from him.  I’ve had to talk wills, life insurance, wheelchairs, and such.  I’m not even three months into my marriage and have had to hear this.

We’ve had our glorious few months but with the sudden increase in the pain and nerve damage we have to face a new reality.  He is ready to call the VA and start getting more answers.  Daniel is looking ahead and trying to plan for the kids and for me.  He’s hurting not just physically but emotionally as well.  To have to face your own mortality, there are no words.   And here I sit, trying to process it all, trying to stay strong.  But I am not.  I’m hurting.  My faith is digging deep to try to find understanding.  But I’m not ready.  I’m barely holding on.  Daniel says I’m strong.  But I am weak.  I can no longer be in denial as this has slapped me in the face.

And since neither of us really know what the future holds, what we are asking from you is prayer.  Prayer for us as we navigate the unknown, the doctor appointments, planning for the future…for the kids.  And please pray for our faith….that has taken the hardest hit of them all.  The tough questions we’ve been asking of God, the trudging through to the deep recesses of what we believe and to find hope at the end of ourselves….be praying for us.

And if you would like more information, you can check out The International Fibrodysplasia Ossificans Progressiva website here.

Reference or Residence?

The other day in church the following question was posed:  Is your past a point of reference or a place of residency?

I may have missed the majority of the sermon due to ruminating thoughts about this question.  As I considered it, I began recalling those times in my life that were significant turning points.  Those so called “forks in the road”.  Have I resided in some of those places or do I look at them as a point of reference, a point of God working His way?

That’s tough.  I can immediately pick out the points of reference:  college in Arizona, moving to Montana, Brazil, Kansas, Arkansas.  I can also distinguish those places of residency, and those have been more difficult to grapple with:  past broken relationships, Daniel’s diagnosis, hurtful words spoken to me.

Memorials in the Old Testament of the Bible tended to be places of reference, not residence.  Jacob, as he was traveling, laid down one night and used a stone as a pillow.  Not my first choice for my pillow, but hey, whatever works for the man!  As he dreamt that night he saw a “stairway that reached from the earth up to the heaven” (Genesis 28:12).  The Scripture goes on to detail what he saw at the top of the stairs and the promises that were spoken to him by the Lord.  When he awoke he commented, “Surely the Lord is in this place, and I wasn’t even aware of it…What an awesome place this is!  It is none other than the house of God, the very gateway to heaven” (Genesis 28:16, 17).

Now if I was Jacob and I was in the house of God, I wouldn’t want to leave!  I’d set up residence there.  Plop down my warm comforter and fluffy pillow (no rock for this weary head!), pitch my tent (okay….cabin), and never leave.  I desire to be in the house of God and Jacob was there.  He saw the very gateway to heaven!  What an amazing moment in his life!

However, he is not like me.  He did not set up camp there.  He did not make that place his residence.  Instead, he “took the stone he had rested his head against, and he set it upright as a memorial pillar…” (Genesis 28:18).  Afterwards he praised God, claimed the promises the Lord had spoken over him, and went on with his journey.  That stone in Bethel was a place of reference.  He did not make it his residence.

I could take a lesson from Jacob on this one.  My past is meant to help provide a testimony of God’s faithfulness in my life.  Even the crappy times.  He is still faithful.  Maybe instead of setting up residence in Daniel’s diagnosis, I need to use it as a point of reference, a memorial to God.  And if I cannot learn from Jacob, maybe I should take note from Joshua.

“We will use these stones to build a memorial.  In the future your children will ask you, ‘What do these stones mean?’  Then you can tell them, ‘They remind us that the Jordan River stopped flowing when the Ark of the Lord’s Covenant went across.’  These stones will stand as a memorial among the people of Israel forever.”

Joshua 4:6-7

Joshua didn’t live there at the Jordan River where God performed a miracle.  He used it as a memorial, a place of reference.

So, I guess it’s time I do the same.  It’s time I stop residing in the past, in the things I cannot change and start living with my eyes on this moment before me.  God can take the pain of the past and use it for His glory.  And someday maybe I can use it as a testimony of His faithfulness.

What about you?  Are you residing in your past or is it a place of reference?

2017 Reflections

This time of year, always draws my heart towards reflection.  Over a steaming cup of coffee, I wander back over the highs and lows of the year and am amazed each time about all that the year brought.  Usually at the start of a year, I have dreams and hopes for the fresh start, new beginning.  I envision life going a certain way.  But over the years, I’ve learned that it usually doesn’t go my way.  And sometimes I am so grateful that it didn’t and sometimes I’m frustrated that I didn’t get my own way.  This year is no exception!  Life has taken on a completely new look for me, and although the road to get here was long and arduous, I am so thankful for where He has me at the end of 2017.

Last December I was in the throes of a brand relationship and we had just discussed the possibility of my moving to Arkansas.  I walked into 2017 with the excitement of this move to be near this amazing man!  We knew that we wanted to be together, to spend our forever with one another but the engagement did not come until May (and what a proposal that was!).  I spent those first few months of 2017 applying and interviewing for a job here in Heber as well as obtaining my Arkansas teaching license.

Then during spring break, with a job offer accepted, some of my belongings moved in to his parents’ garage, we looked at purchasing a house next door to his Papaw.  Thus, began the process of buying my first home….our home!  As we were in the midst of all the paperwork and waiting that goes with buying a home, catastrophe struck.  My apartment burned down.  I cannot tell you how traumatic this experience was, or how even today the smell and sound of a fire causes panic to rise.  This tragedy has been life changing, in so many amazing ways!  I had community rise up and take care of me during my last 3 weeks of work and life in Kansas.  The blessings that poured in touched my life and the life of my family as they watched everyone provide and care for me.  My faith stood the heat of the fire and I clung to God throughout it all.  He was my Rock and He was using this for His good.  That fire was a huge blessing for Daniel and I.  Yes, it was miserable, but I am so thankful for it.

Then just a few days before I was to move to Arkansas and end my season in Kansas,

 Daniel used the entire 6th grade population to propose and embarrass me completely!  But what a memorable proposal!!!!  And a week after that we were signing the paperwork to close on our house! Which lead to a summer filled with painting, remodeling, painting and oh…more painting!  Now our house is a home filled with laughter and three very busy kids!

In the midst of all the house painting and wedding preparation, Daniel received a diagnosis that has rocked my faith.  If the fire didn’t rock me, this sure did….and still does.  Every bump, bruise, fall, over-stretched muscle has the potential to turn into calcified bone which in turn could cause Daniel to become a “stone-man”.  This diagnosis is so rare, especially at his age, that there isn’t any cure or known life expectancy.  This has caused my faith to stumble, to ask some hard questions of God and battle anger.  So, there I was, preparing for what should be the best time of life (our wedding), and my faith was struggling….is still struggling.  BUT…. our wedding in November was such a joyous event and reunion!  We had all of our Montana friends and all of our family there.  It was a big, COLD, party.  That wind…. man, that was cold!

And now here I sit, a Mrs., with three kids that constantly eat me out of house and home, who keep me busy and my heart full.  I’m ending this year, with more events than anyone should ever have to experience in a year…. but I’m still alive!  My faith is still questioning, still seeking and fighting against the anger that rises up, even as I help the kids navigate their faith and their questions.  Daniel’s health is good right now.  We are watching some spots in his neck and in his lower back, but we are thankful for his mobility, his job, and his heart to serve our family.  We will take each day as it comes.  And just like I had no idea what 2017 had in store…. it’s the same for 2018.  I’m learning just to walk each day with open hands, an open heart and an open mind.  I’m learning about courage and the strength it takes to just stand and let Him work in my heart.  I just pray that as 2018 approaches that I would learn to daily look to Him, even when nothing makes sense, and to learn to trust Him in it and through it all.

Blessings to you as you end your 2017…whether it was the best year you’ve had, or one of the toughest.  Here’s to a New Year…. a fresh beginning!  May He be with You through it all.

To those in the path of the fires….

To the dear people in the wake of the fires in California,

I’ve been there.  I have watched my home be engulfed by flames.  I have stood there wondering if my pet was suffering in that inferno.  I watched as all of my belongings, heirlooms, clothes and treasured possessions were burned to ashes.  I wondered what underwear I would wear the next day…. after all, I was down to only one pair…the ones I was wearing.  I went to sleep that night, with tears on my face, clutching the only possessions I now owned.  I can still smell, hear and taste that day.  I may still struggle with the impact of it all, still see flashbacks when I smell smoke.  My nose has become hyper-sensitive to that smell now.

These fires will change you.  They will impact you.  But just how will they impact you?  For the better, or worse?  I cannot even pretend to say that I’ve always let my fire work for the best…. after all, my husband has the first-hand experience of seeing my horrible moments. I may over-react when he leaves the burn-pile while it is still going, or when discussing the fire pit he wants to build and how I told him just how far away from our house I want it placed.  He nods his head, listens to me and holds me when I become like this.  Or when all of a sudden I’m overcome by the loss of something, be it a favorite piece of clothing, a household item, or piece of jewelry.  I lost everything that was familiar to me.

This isn’t easy.  Picking up your life among the ashes.  You don’t want those pat Christian answers.  You may be grappling with the hard faith questions.  I know.  It’s okay.  God can handle your questions, your anger, your confusion.  I say this because I’ve lived it.  But I can also say that if you cling to Him, rail out at Him, He will hold you and carry you through this.  He will see you safely to the other side of this tragedy.

Seven months later and I am living out His goodness from those ashes…His beauty.  My life has drastically changed since that day:  I became engaged, bought a house, moved to a different state, got married, became a step-mom, started a new job.  It’s all new.  Even down to the coffee mugs.  Yes, I mourned over my favorite coffee mugs.  Life has a way of moving on around us. People may forget about the difficulty your heart is going through.  But He never will.  As life moved on around me, as people moved on in their day-to-day lives, I worked on rebuilding what was lost.  But I’ve found that the re-building has been something greater than I could have imagined.  He has given me beauty for ashes.

I’ve wrestled with this over and over, and each time I keep coming to the conclusion that He is good.  I may not begin to fathom the “why” of all that happened, but that’s not my job.  That’s His.  He knows the whys and He sees the future.  He knows what is in store for us.  Even in my anger, even in all of my questions, He has never left.  He is holding me still, even now, as more questions arise.  And what He keeps showing me is that He is building something beautiful from the ashes.  And just like the way He provided beyond my imagination for my physical needs after the fire, He will provide for you.

I am sorry for all that you are enduring with these fires raging over California.  Please know that you have my prayers…prayers that come from one who has lived it and knows just how hard it is.  But please know, He can take your questions, your anger, your “whys”, and turn them into something beautiful.  Turn to Him and let Him hold you during this time.  He knows more than anyone, the depth of your loss and pain.  I am praying for you.

-Summer

New last name, new site

I’m 2 weeks into this whole married thing and figured that it was time to venture back into my passion:  writing.  With this new last name, I thought I’d start fresh with a new website as well.  I’m hoping to become more of a regular blogger and have a few ideas floating around in my overwhelmed brain.

If you are willing to join me on this adventure add me to your “favorites” list and keep your eye out for new posts.  Or better yet, shoot me an email at contactme@faiththroughtheseasons.com and be added to my email list…this way, you won’t miss a post update!  And together, let’s find faith in every season life throws at us!

Meanwhile….here’s some old musings for your reading pleasure:  www.throughtheseasons.blogspot.com