Joy and Grief in ICE Syndrome! And Life!

In an effort to post to this ICE blog a bit more often - since I'm finding so little time these days - I'm going to try to keep my posts short.   Just quick updates, quick thoughts.    I hope.

So in that spirit, here's a quote for everyone to ponder:

Source here

I saw this quote and immediately thought of ICE.   My last glaucoma pressure check was at the end of March.   The number?  In the teens!   Celebrate!  Next pressure check in August!   JOY!    My vision?   Not good - so little, no peripheral, a shifted, seriously fogged image for what's left.   And of course lots of consequences -or a hundred griefs- because of it! 

But by focusing on that one joy - the sustained low pressure - makes those hundred griefs scatter - bearable and at times, just plain funny!   (Ever smash your shopping cart into store poles, your car into a drive up bank pillar?....some of my "funny" stories!)

Think about how joy can scatter your griefs.  How can you apply it to ICE and your life?   Look for and live the joy.   It's hard to do at times, but give it a try.   It changes things.  

ICE Syndrome & Life's Ups and Downs - Learn, Live and Love

ICE is a lot like life.   It has its ups and downs.   Moments of rest, moments of restlessness.   Moments of laughter, moments of bothersome worry and sadness.     That is exactly how my ICE and my life have been this past year.    But when it comes right down to it, it is all about LIVING.   Trying to get the most out of each day – and having awareness of the moments of each day.    It truly takes practice, and at times, I fail miserably at it.  

And I believe, when the moments of life and ICE are tough, as hard as it is at the time, we learn SO MUCH about life and ourselves, 

 

And while it is SO easy to focus on the tough moments (and I promise you I have done this a lot this past year!), focusing on living the positives keep me going.   Here are a few highlights over the past year.   

A son that brings seasons of  smiles and joy to this mama's face

An unbelievable and rare once-in-a-lifetime experience

No fan of snow on the deck - but FINALLY this stuff has melted and winter is giving itself up to spring!

A new addition to the family!

Hopefully some future posts will elaborate a little more on some of the above highlights!

This past week has been such an example of ups and downs, happiness and sadness.  Lessons learned, moments appreciated.  An example of why LIVING LIFE TODAY is so, so important.   

I reside in a suburb of the Kansas City area – and earlier this week  – a nasty horrific hate crime was committed here less than a couple of miles from where we live.     It resulted in three innocent lives being cut short on a Sunday afternoon.   The evil perpetrator was taken into custody just steps from where I am now.   Scary and immense sadness.    But we learn from it – so many lessons.   It seems over these past few days, everyone around here is just a bit kinder, more loving to each other.   LIVE AND LOVE.     

And then, just three days later, I saw (so thankful to see!) my son break a track school record.   It was his goal - such triumph on my son’s face – such parental happiness for him.   One proud mama.    LIVING AND LOVING.  

Yes, life IS difficult.   ICE IS difficult.   But life is good too - and ICE can be good too if we allow it to be.   It's all in how we choose to react to it.    Up and downs.  Cherish the ups.  Learn from the downs.  And...

 

                                             LIVE AND LOVE THIS DAY.   LIVE AND LOVE THIS MOMENT.

A NEW YEAR and A NEW POST (finally)!

 

Whew.... it's 2014!  Where have I been these past 7 or 8 months?   What have I been doing?   How is my eye?  

Honestly, those are some loaded questions!  I have so missed getting a chance to update this little blog - giving you updates and hopefully a little encouragement along the way.    Several of you have sent me emails - checking on me and updating me on your situation.    All I can say is thank you and I'm sorry for not getting back to you.    I hope to do better in this new year.  

In a nutshell, I have been incredibly busy with life.     I've been blessed to experience some incredibly high moments.    And with it being life, there have been some pretty low moments as well.    Through it all, I've learned some valuable lessons - and I have practiced lots of patience and perseverance as well.    

I've experienced multiple surgeries in my right eye - with mixed results.   For the time being, I'm living the same "new normal" and I'm stable.   I'm very grateful!    

In my future posts - which I hope will be sooner than later - I'll share more details on my eye surgeries and what all of it has meant.    And I hope to share a glimpse of those mountains and valleys that I've experienced over these past few months. 

I hope you are all doing well.    Even though I may not have updated my blog - or reached out and contacted some of you,  please know that you all have been in my thoughts over these past months.    I hope in 2014 that we will be able to continue our dialogues and hopefully the new year will bring us all stable ICE eyes!

Many blessings to you for the new year!   And remember....

Live THIS Day!

ICE Syndrome - Reflections on a Quote

Another one of those "Quotes of the Day" arrived in my inbox a few weeks ago  - and when I read it, I immediately thought of ICE.   So here it goes .....

"Our greatest glory is not in never falling, but in rising
every time we fall." - Confucius

The reality of ICE is that our eye health and vision will fall at some point   Our eye pressures will go up , our corneas will cloud.    And when that happens, we hope and pray that our doctors have the right medicines, the right surgical techniques, to restore our eye health and vision to the best possible outcome.    Sometimes those medicines & surgeries work, and sometimes they fail.   Sometimes they tease us and work for awhile- and then they fail shortly thereafter.     Some of us ICErs find ourselves experiencing failure after failure - and hopefully some of us will experience success for a lifetime.    

What about our attitude and how we handle these ups and downs?   I've said it many times before - it is up to us to CHOOSE our response to our situation, up to us to CHOOSE our attitude to ICE.   Oh, I'm human - I struggle at times - some of you know that.   On those days when I'm constantly bumping into things - or I think too many people are looking staring gawking at that very sick eye of mine, a part of me - my attitude - falls.    It's human nature.   And so I fall but I do get back up.   Choosing to know that we will get through this, choosing to be grateful for what we DO have, choosing to know that something positive will come from this - this is the rising up that makes us all stronger.   And honestly, just knowing that I'm not alone in this journey has helped me.  I appreciate all of you! 

I head to my cornea specialist on Tuesday.  More updates later!    

Live THIS day! 

ICE Syndrome Journeys - Vision Encounters & Life Lessons from Spring Break

On our spring break trip, we visited this state...

 

 And we visited this fella ....   (Isn't he adorable??)

We had a great time visiting friends and experiencing life with them.    From watching baseball games to celebrating a milestone birthday & everything in-between, we were on the go all the time.    The weather was delightful and an antidote to the 2 feet of snow we had before the trip and the 8" of snow we had one week after we got back.   I'm pretty sure the snow is now over for the season ...but didn't I say that 3 weeks ago?   

On the first and last days of our trip, I had two vision related encounters.   I've thought about those two encounters - wondering what I could learn from them.  

On our first night, we went to a very busy Tex-Mex restaurant (I do love me some chips & salsa, most definitely my biggest food weakness!)     My son and I went to make a purchase at the front of the restaurant.  The hostess was young, friendly & pleasant - and I caught a glimpse of her eye.   It was an oh-so-familiar sight....a patch graft on the lower outer quadrant of her eye.    I wanted to so give her a hug, encourage her and let her know I knew what she had gone through.   But the restaurant was noisy and busy - she was scurrying about, taking care of her customers.  She was LIVING the LIFE she was set out to do - and her eye, or the way it looked, was not going to stop her!    

On our last day, we were shopping at an indoor mall and we needed to get to the lower level.   Although we searched for an escalator, an elevator was nearby.   As we waited, almost out of nowhere appeared a lady probably in her 60s or 70s - pushing a stroller that I assumed held her grandchild.    We exchanged pleasantries, talking of elevators vs. escalators and strollers.    She mentioned she was visually impaired - blind - and taking a stroller on an escalator was a little bit much for her.   She spoke of living in the Midwest before she moved south and how her vision instructor taught her how to ride the escalator with her disability.    I remember thinking how she didn't look vision impaired and her attitude was absolutely fantastic.   I wanted to give her a hug,  encourage her and let her know I admired her,  but the door opened and she scurried away to meet up with her party.    Despite her vision disability, she was LIVING LIFE.   Her lack of sight of was not going to stop her!  

So the lesson I have taken away from these encounters???    

Regardless of where we are in our years of age, or how our eye looks, or our stage of ICE, or any impairment we might have....we LIVE our life.   We don't freeze, we don't despair.    We may have to adjust things a bit at times - a change in vocation, a change in location, a new way of doing things - but we continue to LIVE.   We embrace what we are given and keep on moving.   This is a life lesson. 

While I have been practicing to LIVE....THIS day, THIS moment - I always welcome the reminders - and these spring break encounters do just that.    

Live THIS day my friends!  

 

So long ICE - Welcome Spring!

Winter gave us hopefully one last blast of raw cold and wind this past weekend.   And of course, my son had an outdoor soccer game on Sunday evening - the temperature was 32 and the wind chill temperature was 20.   As is well documented, I do not like winter for obvious reasons - & so I complained.   But I must say - I enjoyed the moment - even if it was the coldest I've been in a long time, if ever.     This time last year, I was in-between eye surgeries in February and April, so there would have been no way my eye could have taken all that wind.    So this year - I LIVED the moment.  It was a memory created.

There are just a few little clumps of snow left that had once been 8 foot mountains.   Last week, in the start of the slow melt-off, my son decided he had to enjoy this winter in an unlikely way.   As much as I begged him to come inside, I was doubled over in laughter and tears.  He is such a joy.   I had to snap a picture.  Perhaps it will bring a smile to your face.  Yes, that's him in slippers, shorts, no shirt, artist's hat and snowballs in each hand.  It was his tribute to hopefully the last snow & ice of winter and a welcome to spring!  Another moment and memory captured.

So now, I'm starting to see just a tinge of green in some of the tops of the trees.  A good sign!   Spring Break is coming upon us and the little family will be taking a little excursion to visit some friends in a warmer part of the country.   Temperatures are to be near 80 & sunny most the time.    Ahhhh - absolutely perfect for this body!    Sunglasses weather which I LOVE!   (Topic to be discussed in a future post!)    Last year, I didn't get to make the trip with the hubby & son since I was still too much in "recoup mode" from the February surgery as well as, "getting ready for the next surgery mode" for the April surgery.   THIS year I am absolutely going to savor the moment and create some more memories! 

Hope warmer weather is headed your way too.   ICE be gone!  ;)

Snow and ICE

I am not a winter person.   Never have been - never will be.    I'm stubborn like that.  I love the midwest - but I do not like a midwest winter.    I do not like to be cold, I do not like snow, I do not like ICE  - and that includes ICE Syndrome!   ;)     This past week, winter decided to dump nearly 2 feet of snow in two major snowstorms in my neighborhood.    How not-so-nice. 

I so want to live the moment - live the day - but a snowy winter day is one that is best enjoyed indoors.  I ask my son - on his fourth snow day of the week - to build me a snowman outside my kitchen window - one that I can look down on and smile upon in the upcoming days .    And so he does.   I venture out on the cold snowy deck, snap a picture.  Adorable.  My way of living the moment in winter!  

 The snow ends.   Two feet of snow - with just a little in-between melting and lots of snow plowing - results in tall mountains of snow on street corners and narrow streets.   Street corners of tall snow mountains and narrow streets aren't the best driving conditions for someone with a very cloudy ICE eye.    But I take it extra cautious -  I get my critical errands done and get my son to his next activity safely.    But after all of this, I do declare it is time for some warmer weather, sunny skies and sunglasses.   I'm ready for Spring!