Back to baseline!

I try to put my thoughts into words at least once a week.  However, lately, I've fallen a little behind.  I'm finally back to my previous, physical baseline.

My days can be anywhere from an unexpected 5 minutes of blessed stand time to a quick change of intense nausea and dizziness and imminent falls.  There is something very discomforting about my normal baseline.  The swings can be as unpredictable as the weather.  My plans can be changed at the drop of a hat.  I can be laughing and talking one moment, and crying in pain the very next.  Those around me are quite used to the influx of change and have learned to roll with the punches.  I, however, find it quite difficult to deal with the uncertainty of it all.  

When you are used to feeling sick 24-7....you can at the very least expect to be sick.  There is a peace about knowing what you day holds.  When you feel well for a few days or weeks, there begins to be a new kind of peace of endless possibilities.  However, when the day can change as quickly as mine does, there never seems to be 'peace' for my mind.  I have to methodically renew my mind each and every day.  I found that out again this morning.  I got up as I normally do, just to find that today wasn't going to yield the same 'stand time' as the previous few days.  I wasn't expecting the sudden change and tried to foolishly overcome it.  After conceding defeat, I immediately began to feel angry and maybe even somewhat sorry for myself.  Who was going to heat up Ellie's breakfast today?  The 2 of us made a great team, but I wanted to secretly blame someone or something.  After all, it's not really fair that I cannot perform the task of a normal person.  Aren't I somehow entitled to have my own little pity party?

Ellie and I began school this morning with a Bible verse of her choosing.  She pulled it out and asked me to read it out loud for her.....paraphrasing, of course, "GIVE THANKS in all circumstances.............".  Huh?  Really?  Yes, give thanks in all circumstances.  Ellie wondered why mommy had big alligator tears streaming down her face.  It was easy for me to answer.  "I'm just giving thanks, today, Ellie.  I needed to be reminded that I'm the luckiest Mom in the world because I'm here and able to homeschool you."  Just a month ago, I wasn't sure I would even still be here, and today I am teaching my little, precious princess the joy of giving thanks in all things.  I became overwhelmed with thanksgiving.  What many of you may not realize is that I had prayed and prayed to get the opportunity to speak 'life' into this girl's life.  We both took turns saying all the things that 'sucked' but how and why we could still be thankful in those circumstances.  It was a funny and fun exercise, but one I needed today.  

No, today isn't my favorite day.  My body does hurt and is weaker today.  But I have so much to be thankful for today and everyday.  It's hard to give thanks in every situation.  It's all about choosing that JOY every day....not just when it's convenient.

It does take some reminders.....but it turns out, I'm one of the luckiest gals in the world.  I am still living my 'dream' even if it's not quite the exact vision I had imagined it would be.  I feel overwhelmed with joy that I get this chance....from my sofa....and from my bed.....to impart academic and life wisdom into my daughter.  Just when I thought my dreams were done.....I'm still teaching and mothering.  Isn't that worth giving thanks for today? What things are you forgetting to be thankful for?  Does your current circumstance muddy your vision?  Why don't we both take a big wet cloth and clean off the windshield.  Turns out, my rainbow is still there!  I just had to look for it.

What does 'HOPE' look like to you?

For the last 2 weeks, I HAD been mentally working on a deep, heart felt piece about 'What does regret look like'.  It was a turn on a dime kind of moment for me during my last hospital stay.  However, I need to post-pone that plan for now.........because I think I have to share something a little more powerful in my life today.

What does 'hope' look like?

If you've ever read a single one of my blog posts, you know that my 'hope' is one of my driving forces each and every day.  I still wake up surprised every morning that I am sick.  I still 'fly' in my dreams at night, I still plan for my 'future', and I often talk about the chance of some brilliant mind discovering the unknown cure for my incurable disease.  I haven't cleaned out my tennis skirt drawer, given away my sewing machines, or even sold my 'dress' clothes, yet.  I guess you could call that 'hope'.  No, I'm not naive to assume that all the doctors are incorrect, and that I will magically one day walk and sit as normal being.  But if I removed all 'hope' of any type of improvement, I am pretty sure the next time I faced 'death' it would NOT be with such fervor to fight.

However, knowing what probably lies in my future....even though the doctors have all been very noncommittal to the exact process or timing, I must search for that hope each and every day without fail.  But I'm finding more and more that the hope isn't at all in the potential chance of a meaningful, healthy life.  It turns out, HOPE, for me, is finding MEANING IN MY LIFE.

I'm not ready to write the story of my 'happily ever after', because the end of story is yet to be determined.  I'm also not ready to write the story of 'dang, my life really sucks', because amidst the stormy days, I'm still seeing so many rainbows.  But I'm very, very busy writing the stories of HOPE that have brought even more meaning to my life than I ever even knew possible.  Could there even be blessing after blessing coming my way that I would have never, ever received had I not been given the misfortune that has been cast upon me to bear?

My new HOPE is finding these beautiful meanings to life!  So, what does 'HOPE' look like to you?  I always thought it had to be a cure, a healing, a chance of survival, or a magic pill.  Does your 'hope' have to be the whole kit and caboodle for it be good enough for you?  Does it have to be all or nothing for you to call it true hope?  After all, the universal accepted definition of HOPE is:  "to look forward or to feel that something desirable may happen".  While my final outcome will most likely be nothing desirable, can I not still have a sense of looking forward to something or a belief and desire that something good will still happen?  I don't believe my only HOPE has to be in the ultimate cure, walking, sitting in a chair, living pain free, having my heart function normally, driving again, enjoying my abandoned hobbies, getting to cook or sew, being a 'normal' wife and mother, going out to eat or the movies, or even having my independence back.

Let me tell you what HOPE looks like to me:

My entire graduating class got together unbeknownst to me and made me a cherished gift (a photo afghan filled with pictures).  Not only did they all chip in, send pictures, plot and plan......but 4 of the classmates made a 14 hour trip through the night and snow to hand deliver it to me as a surprise!  They showed up on my doorstep with the gift in hand.  I probably will never find the right words to express what that meant to me.  I know after a few days, I'm still trying to fight back the tears of gratitude that seems to well up every time I think of their sacrifice.  Not only did I ever imagine they would show up after 22 years at my door, but I had no idea these people cared so much.  What did that translate to me?  After I put aside the true expression of love, selflessness, and friendship:  "It was hope".  There are still so many wonderful, amazing things that are worth fighting for....some I'm learning I didn't even know were a possibility.  This is what hope looked like to me!  I got to learn a lot about my old friends that day.  I got to see a new beauty in their friendships.  I got to hope that there are even more memories to be made and even stronger relationships to forge.

My mother recently came to our house and spent 2 solid weeks waiting on David and me.  Between crip 1 and crip 2 and 3 busy, busy children she had her hands quite full.  After laundry, cooking, serving, cleaning up, and running errands, she still managed to minister to me in special way and give me a few much needed pedis.  (as a former "girly-girl" this is paramount to me).  This was not only a lot of fun but showed 'love' in a tangible way.  Would this be the classic definition of hope?  Probably not to most.  However, if keeping with Webster, hope is believing something desirable may happen.  It doesn't have to be a big miracle, it might just be the little things.  Watching my mother minister to each of my family members in a different way, gave me hope of all the special ways our bonds will grow stronger and stronger each year.

I've recently received a few surprise letters and emails from old acquaintances and from some people I've never even met.  These notes were sent to me to let me know that I had touched their lives in some way, whether through this little blog, maybe a post on FB, hearing a story, or through another friend.  Wouldn't that look a lot like HOPE?  I was told I would never fully recover and my chances at any normal life were gone.  My whole 'bucket list' was trashed and burned.  One of my biggest heart's desires has always been to give back to others.  I had dreamed of writing a book, public speaking, starting a ministry, volunteering in the community, doing more mission work one day, and a few other things.  When I cried out one day 'BUT I'M NOT DONE, YET!', I never imagined that I would still get the opportunity to give back no matter how small my role may be.  That is hope to me.  I can HOPE and PRAY that I can bless someone....somewhere.....somehow.....no matter how tiny a contribution.

Hope can come in all shapes or sizes.  Hope doesn't have to be the ONLY desired outcome that you had anticipated.  I went back to confirm that with good 'ole Webster himself.  The definition never includes the word 'ONLY'.  It's just a hope that something desirable can or will happen, or something to look forward to.  Our dreams are not crushed because the final result won't be the exact image we had imagined.  I've recently been shown in several instances by old friends, some new friends, and family that there is HOPE.......it's not the 'happily ever after' I imagined it would be, but it will be HAPPY, after all!

So, what does HOPE look like for you?  Does it have to be the fairy tale, or can it be the story you were always meant to write?

"In such a time as this".... (pretty heavy thoughts)

As I lay in yet another hospital bed connected to more heart monitors, iv's, oxygen, and blood pressure cuffs, I cried silently through the pain "Where is my God"?  I had had enough.  The pain was more than I was willing to bear any longer.  The anguish of constant nausea and vomiting for weeks and sudden swings in my heart rates and blood pressures had taken their physical and mental toll on my weak, weak body.  14 lbs thinner in just 2 short weeks, a weakened heart, and pain beyond my belief had all made me feel that I had been forsaken.

I imagine that no matter what your belief systems are, there has a been a time that you have prayed or asked 'is there a God who cares about me?'.  I have PURPOSEFULLY not shared much at all about my faith and have left out most religious overtones.  I want this blog to be a place where anyone can feel at home and uplifted without my own personal views being stuffed down your throat.  I don't want 'Melanie' to get in the way of an opportunity for someone to receive encouragement because of a bad experience with religion.  I also FIRMLY believe that it's not WHAT you say but how you LIVE that speaks louder than any words.  I don't have to bombard anyone with my own views.  So, I will promise to keep this a place where ALL are welcome.   All views, religions, beliefs, politics, opinions, and hearts can relate to my story in some way in their own worlds.  However, for this one post, I will need to talk some about my faith because without it, this story would not be able to be told.

For the purpose of this one narrative, I feel I have to share one of my heart's cries during the last few years.  It's a very vulnerable and real moment I want to share with you, that I'm sure the vast majority have at some point, experienced.  You may have experienced your darkest day very differently than I did.........maybe you lost a loved one, had someone break your heart, maybe it was a shattered dream, it could have been a sick child, lost faith in people, maybe you were rejected for a job or opportunity, maybe you had lost your way and were not sure how to get back, possibly it was a failure you weren't sure you could correct, infertility, depression, divorce, an accident, a frightening diagnosis, or something beyond imagination.  There is something so awful about that dark day....you probably felt all alone.  If you are like me, you may have thought no one could possibly relate to the pain you were feeling.  I know in that moment, I felt I could not 'do this' anymore!  It was in those moments that I began to even question my deepest and most meaningful beliefs.  How could a good God let me suffer to this extent?

Isn't this a question for the ages?  Haven't we all asked this before...both Christians and non-Christians?   How does a good God who could take away all pain allow his children to experience such pain?  I don't think we will ever have the answer to this question.  My family even recently viewed Kirk Cameron's documentary on this very topic searching for answers about pain and suffering but were left still asking the very question that led us to watch.  Why do bad things happen to good people?  I've personally been given a repertoire of responses to that question from many well-meaning individuals, but none seem to satisfy me or my family.  If you could look into the eyes of my child, who cries each and every time his mother is whisked away by an ambulance, and tell him your list of 'reasons' why God is allowing his mom and him to suffer to this extent...I imagine you, too, may begin to question the very foundations of those beliefs.  That is one reason we were created as intelligent beings, isn't it?  We were designed by nature to question, to wonder, to ponder, to imagine, and to mold and evolve our beliefs.

I'm sure there are a select few who have already decided that they know what they believe, period....and nothing will ever cause them to move or waiver from it's sanctity.  Was I not one of those people?  Did I not have firm, concrete, unwavering beliefs that no man could ever sway?  No, no man could have ever changed my own beliefs.  However, my deepest, darkest days caused me to reevaluate all the things I had once known as fact.  Does that then make me a weaker version of my counterpart?  Or could it possibly have made me actually put my 'faith' in action?  Did I choose to not accept all things untried and untested as truth?  Can I now say with all certainty that I know EXACTLY what I believe and why?  Yes, I did have to reevaluate and eventually change some of my core beliefs because I was in the fire, and I got to see what it's really like when the heat is turned on.  It is so much easier to believe when you are not truly tested.  I could not look my precious children in the face and say the phrases I'd been so methodically taught.  They didn't apply anymore, they were not our truth.  We had a new truth, one we had tested....one we had lived....one we knew to be now true.  We do have a GOOD GOD!  He loves me and my family very, very much.  I see Him in a very different way than my ignorant eyes had seen before.  No, it's probably not going to be the same way that the mainstream has viewed religion, God, or Christianity, but it's going to be the way He's revealed himself to me in my darkest moments.

I began my post this time with the story of my heart's cry in some of my darkest hours.  If you have followed along, you may have a small glance into what those moments looked like for me.  I know those who saw me in those days leading up to this last scary event, can probably relate much better to the true pain and torment of those days.  However, I need to tell the other side of the story, too.  It's the side of the story that makes the story a not so 'sad' story.

You see, my husband and I had just been told by yet another Autonomic doctor that there was zero chance of a meaningful recovery.  I would have a chance to make improvements, but there is no chance  I will ever recover.  We knew this news already, but the sting was no less painful.  We glanced at each other and sat in silence for several minutes.  Just moments later, a dear sweet angel walked into my hospital room.  This angel was a friend I had not seen in about 22 years.  Out of the blue, this dear, sweet lady walked into the room and visited with us.  There were tears, stories, and hugs.  She had driven from another state to come and see me.  Was this timing a coincidence?  I had just cried out hours before wondering if I had been forgotten by my God....and in walks His servant.

The story doesn't even end there!  My sister in law, who lives in New Mexico, felt it in her heart to come and make meals and care for us while David was recovering from foot surgery.  She had no idea that I had just gotten off the phone with my mother asking her to come but she could not come for another week because of a prior commitment to a family member.  Was this also a coincidence?  What about the group of people that we have never even met that had it laid on their hearts to send my husband and I words of encouragement and cards in the mail? There was even a check sent to us by someone we have never met or spoken to for the exact amount of the hotel bill for my mother in law to take us to the Autonomic Clinic.  Was this, too, a coincidence?

Or could it be.....could it possibly be.....that the answer to our question:  "Why do bad things happen to good people?" is we have NO idea, but we are not alone in this battle.  I am not alone.  You are not alone.  If we look around hard enough, we will see that we were never all alone in this battle.  I can't give a good answer as to why or how that friend knew when to show up.  I'm sure depending on your 'religious or philosophical' views, you may have your own conclusions.  However, for me, in these last 2 weeks, I can say that it was 'in such a time as this'.  I was not forgotten or forsaken.  I firmly believe in a higher power that showed me that He loves me very, very much even in the midst of my immense suffering.  No matter how you believe, it is another reminder that when the walls are caving in, when the world looks deep and dark, when things appear to be unjust, when we've felt we can battle no longer, if we choose to look around or look up, our strength will come from someone or something.  I guess I could have hung my head and decided that no matter what silver linings were around me, I wasn't going to let go of the 'this isn't fair' card.  But I believe that my long term investing in 'choosing joy' in the face of adversity allowed me to see the blessings that God was laying out for me in the midst of my own pain. (even though I can 100% honestly tell you that I wasn't choosing joy in those days of immense adversity)  I just wonder how many times I've missed seeing those little acts of His love, because I couldn't lift up my head long enough to see them while relying on my own strength.  Again, if you don't believe in a deity as the origin of those strengths, joys, or silver linings, they are still there all around you waiting to be embraced.

Why do bad things happen to good people?  I still don't know!  I will wrestle with that question till I get the answer one day in heaven.  But what I do know is that when I was at my lowest....I was shown a great love in a tangible way  .....that I believe only One could have shown me 'in such a time as this'!

Lots of emotions....

After dealing with so many things over the last few months, I'm finally coming a bit more down to earth.  We've had such a roller coaster of events and emotions this winter.  First, I was teased with several weeks of relief from pain and symptoms just to be thrown back into the worst spiral I'd ever experienced.  We had Christmas, family, and lots of action around the house.  Shortly after that, my husband had an accident and ended up having an emergency foot surgery and hasn't been able to walk since early Jan.  I then began to have life threatening changes in my heart and blood pressure and was taken to an autonomic clinic out of state for a reevaluation.  To say that this has been a difficult time for our entire family is quite an understatement.

I, personally, really haven't even had a chance to mentally process all that has happened.  I'm always concerned that when the whirlwind passes, that I will be left to deal with all the emotions that had to be suppressed just to survive.  I know that eventually, I will need to come to grips with the extreme disappointment of having my good days taken from me, yet again.  I will need to deal with the fear of coming face to face with 'the end'.  Relief and gratefulness will also flood my being, as I realize I get another shot at life.  Sadness, loneliness, anger, confusion, uncertainty, anxiousness, denial, discouragement, and faintheartedness will all try to rear their ugly heads.  This is a lot to take in all at once.  I'm sure the juggling of emotions will be no less than a circus act.  I know that it's very important to allow myself to have emotions.  After all, we were created to have emotions.  These emotions are what separates us from other species.  What will be my healthy balance?

If you've read any of my blog before, you know that I believe JOY is a choice.  However, suppressing these very real emotions could potentially cause me far more damage than allowing them to surface.  I've verbalized to my family my internal fear of allowing myself to let these very real emotions come into play.  As the last family member leaves this week, I believe it may just be very healthy for me to sit down and have a good cry.  Maybe I should allow the flood to take me off my 'always put together' feet, and let a few out of control moments be approved and allowed.  But, at the end of the day or week, I still get to choose which emotion gets to stay and which one will not be allowed to consume my thoughts.  I'm well aware of how powerful 'fear' can be if allowed to permeate thoughts on a daily basis.  I don't want to give it any permanent place in my life.  However, I was afraid.  I did have fear.......my family had fear....my husband had fear.....it was there wether I wanted it to be or not.  I want to meet it head on and try to take away some of it's potency.  I'm choosing to be very deliberate in my process.  I will not fall apart.  I will not let these emotions define me this winter.  Yes, I have many emotions, but they do NOT have me!  I'm not interested in wasting a whole lot of time meditating on all the loss when I've been given yet another chance to live today as my last.

I wonder how much time we've wasted giving too much time to our flood of emotions.  While it's very healthy to deal with emotion quickly and swiftly and allow it to have it's place, how much time was wasted not moving on and forward?  If JOY is truly a choice (which it is in my case), why are we spending so much time questioning what we cannot control?  I plan on spending some time processing all that has happened, but I don't plan on letting it define who I am or what I will be today or tomorrow.  You may not have recently had a life altering event, but is there a chance that you've allowed a powerful emotion rob you of an opportunity or a chance at joy?