Wednesday, January 20, 2016

THE PAIN OF WINTER






I THINK THAT IT WOULD BE SAFE TO SAY THAT THOSE OF US WHO SUFFER FROM CHRONIC PAIN FIND IT MORE DIFFICULT TO MANAGE IN WINTER!
Pain from arthritis and inflammation is aggravated by colder temperatures and  for me, personally, it often feels as though my body is frozen in concrete. It's no wonder why people who retire are drawn to places with warmer temperatures, they are simply kinder to our body.




I feel at times conflicted about the thought of one day, leaving winter behind as when the temperatures are reasonable, I still find so many things to love.  I find it both incredible beautiful and peaceful to watch falling snow and when paired with a vivid blue sky, it is truly breathtaking. Roaring fires, crystalline tree branches and festive lights always make me smile but the pain of winter  encompasses my body like an ugly bulky coat.





 I am very fortunate (along with my family) to own a property in a mountain resort called Panorama and we just recently began staying part of winter there, generally dictated by school breaks. Despite the overwhelming scenic beauty and utter peace, it is a bittersweet time with my family.







Sitting in a mountain cabin with a roaring fire, a great book, four dogs, (yes, four!) and my family is indeed a gift! But there are many times that I am left alone while they ski, toboggan, snow shoe, skate and do other outdoor activities. Please understand, I am not looking for pity, it is simply what happens when one member of the family cannot participate because of a disability.



Years ago, I skied with my husband several times, even going on an "expert only"run once, well beyond my capabilities. It was actually my handsome boyfriend who pushed me to go well beyond my comfort zone, and under the "impress the boyfriend," spell, off I went. That man is my husband now and even though that particular experience was quite frightening, I am now grateful for that memory. Even if skiing wasn't my forte, being extremely active was a joyous part of my daily life so I never dreamed that I would never have the opportunity to ski, even a beginner run, with my children.









Malia and Christian have only known their mother TO BE THE ONE ON THE SIDELINES.

 







SITTING, NOT DOING. RESTING, NOT PRESENT, AND ON GOOD DAYS, OBSERVING BUT NOT ACTUALLY LIVING THE EXPERIENCE.



IT ONLY TAKES ONE LOOK AT THEIR CONTENTED FACES TO KNOW ALL I HAVE MISSED.









So, watching them head off together for a day or afternoon of skiing wanting so badly to be with them is wearing. I find my depression returns with a vengeance, and I can't seem to swim out of it's intense, stubborn grip.There are many days when I feel that I could easily be swallowed up by the pain and it would be easier for everyone.







Even still, I try to force a smile to greet their rosy scarlet cheeks and typically buoyant moods, feeling just a smidgen sympathetic if they are cold and tired. I don't want to feel like this, I am happy for them but truthfully, I am equally devastated missing another part  family activity. Inside, I cannot even begin to stop the torrent of tears that remind me that somewhere deep inside, I am still present and obviously not accepting of my fate.



My husband tried to bolster my spirits by enthusiastically saying as he often does,"LET'S DO SOMETHING THAT MOM CAN DO!" I know that this phase is meant with only good intentions but I truly hate it. I feel like everyone has to take a step down, with choices mainly being a board game, movie or pushing myself for a family walk. And because it was so incredibly beautiful outside, my husband pushed for a walk in minus 20 degree weather. To put it in perceptive, it was too cold to even take the dogs, and they are always my joy on the walk.We trudged along, heads down, feet and hands freezing, and because of the bitter cold, it was utterly dreadful.



For two days, I didn't allow my depression a voice, not wanting to put a damper on their fun. My family need to live fully and not feel they have to hold back their joy because of my chronic pain.  I know that my disability has forced my life into a small compact box that holds very few and unexpected surprises. It's interesting because I know that the activities that I mourn for in my life are not just for the pure joy of living but for the deep sadness I feel because my children never had that opportunity to know a very different active person. So I live on a precarious tettor-totter, days of accepting but having other intense moments of missing the chance to hold my daughter's hand while ice-skating, or treking through the snow on snow-shoes with my son. This was and is my personality,  I simply don't identify with this disabled, rather vacant woman who has had pain as her constant companion for over 17 years.

IT IS ONLY IN MY DREAMS THAT I CAN FULLY BE MYSELF WITH MY CHILDREN!


So, it was only a matter of time before the depression volcano blew and it happened when a wonderful, young lady who is staying with us was figuring a suitable time to go sledding with my daughter. Suddenly, I blurted out, "Well, I might be going with Malia this time!" There was silence around me as the complete impracticality of my words let themselves sink. My husband broke the silence, "I don't think....well, I don't think that is a good idea. You can't!"

I pressed the point strongly knowing inside that I was being unreasonable but sadly, I only accomplished in seeing my daughter's face break into pieces of sadness and pity because she too wants these experiences with her mom. We love each other fiercely, my children and I and they mourn every bit as I do, the way life has unfolded. Seeing Malia's expression made me even more stubborn and unrelenting but looking back at that day, I simply feel that not being able to go with her was  simply unbearable for me. I didn't mean to cause difficulty to my daughter or the young lady who was to go with her, My sadness and anger had simply imploded towards the ridiculous and futile notion that a mom with a fused and crippled spine could fly down a mountain on a sled, cherishing the frozen tears of laughter from her daughter mixed with her own.

 Of course, I didn't go sledding, and instead, I watched for a brief time from the kitchen window. I couldn't help but wince watching their often spectacular tumbles and knew in my heart that I could have been badly hurt, even paralyzed from a fall. Guilt from my bad behaviour steered me to writing but my arthritic hands could not cooperate. So, I sat and hugged my dogs and had a profound conversation with my fifteen year old son instead. Christian often doesn't participate in these family outings, he hates the bitter cold. However,I am starting to truly wonder if Christian has taken this role of often staying behind just to make sure that his Mom isn't alone. He has always been my protector, my deep thinking and feeling son whom I adore. I know that one of the reasons that Christian has suffered depression in his life is because of the very fact that he is unable to fix his mother. I know it is essential for me to find joy in my tiny box of life so Christian can find his own. We joke about the fact that we could easily live as hermits with our pack of dogs.


















Our COLLIE, MAESTRO is so crazy intelligent and entertaining, OLIVER AND SOLOMON (OUR MINIATURE LONG-HAIRED DACHSHUNDS) are our resident sweet-hearts and professional cuddlers, and the spirit and joy exhibited in our senior SHELTIE girl, KIESA is inspiring. I am so grateful for the incredible love of my dogs, their comfort is immeasurable!






Malia eventually comes home and I find myself genuinely happy for my little mini-me who has just lived life to the fullest for the both of us. I forgive my earlier unreasonable behavior and recognize that those moments are necessary to remind my kids how much I want to be there with them!  I am such a blessed mother to have these two children with such big and loving hearts.

The pain of winter just eased up a little; reading a great book by a crackling fire is indeed slice of heaven. I remind myself to sink heavily into this simple joy, and cuddling with my dogs patch up my broken heart.

I am truly happy and grateful that this moment will sustain me for a good long while!


Blessings,
L















Thursday, October 22, 2015

Not Playing "THE CRIPPLED CARD"

I'm not sure when the pain that I had felt for several years started to define me....when it demanded more power? 

I had to whisper the words "I am disabled," the first time I ever said it. Even fifteen years later, it still sounds like I am saying something shameful about myself. That I am less than I was before.

 Pain has made me less tolerant in that way, it's difficult not to take it personally when my family members don't put away their stuff and let the house go. I was brought up to always keep an immaculate house and frankly, it breaks my heart to have lost my physical ability to perform household tasks that used to give me such satisfaction.

 Stumbling over dirty laundry on the floor, seeing the garbage close to the top, dusting, vacuuming that's long overdue, I find it impossible to adjust to my family's cleaning time-table. The frustration spills into anger both towards them and my disability and when I can't contain my feelings anymore, they speed like a mini-tornado directed towards my family.

Loading their dishes into the dishwasher, I spit out the words, the taste already bitter in my mouth, 
"Why do you let your CRIPPLED MOM do this for you?"

In that moment. I felt both intense shame and sadness. I can't say enough how difficult it is to be dependent on people but in that use of the word, "crippled," I was being derogatory and even though it was directed to myself, it was out of line and hurtful to my children.
I never mean to play "the crippled card" but sometimes when I'm frustrated, I slip.
Just for the record, I would never use "that" word directed to anyone else!

When you look up the word "CRIPPLED" in the dictionary, definitions include:


"a term used to refer to a person who is partially or totally unable to use one or more limbs"
"a lame or partly disabled person or animal"
" one that is disabled or deficient in a specified manner"
"a person who is disabled or  impaired in any way"

" something flawed or imperfect"


FLAWED, IMPERFECT.
.Those words strongly resonate with me although aren't we all flawed and imperfect in some way? However, the fact remains that this "flawed, imperfect spine" has left me  mostly housebound and yet living in the very space that no longer reflects me. I often find that this in itself is as crippling to me as my pain. It is a constant reminder of the capable person I used to be, the wife and mother I used to be. I look in the mirror every day hoping to see "Her" familar face but instead see deadened eyes, and a pale face that rarely smiles.

 I know that I am not alone, there are so many of us that feel dependent living with families who are trying to carry the extra load of that person's former contributions. When I write that word, it strikes me like a blow to the chest because most every contribution that I made, financially, emotionally, physically has been replaced with the little four letter word that stole my life, PAIN!
 There is the physical pain of course but also the pain felt the countless times that I have to see the light fade in my daughter's eyes when I postpone yet another sleepover request. My heart breaks watching my daughter bravely hide her disappointment remembering that I AM NOT LIKE MOST MOMMIES who can host play-dates, host her birthday parties, drive to activities, and participate in those activities. The saddest part to me is that my little girl is getting used to leaving me behind.




Can I see my face in the mirror and not be sad

Could I be a strong, loving mother and never play the crippled card?

Can I live for the future and not be locked in the past?




Some people really take offense to the word "crippled," and I can completely understand because the word can be used in a very negative way and of course, there are better choices.   But the fact remains, that my spine is crippled. It is was a serious S Scoliosis curve that is now fused with metal rods and screws, worn out...basically done, unraveled my nerve centre in my brain sending messages of pain to most of my body. There is no word that describes my pain better than to say it is crippling!
.
I don't want to play the crippled card, honestly I would give anything to have my healthy active body again. The words in my blog simply allow me to release some of the anguish of life with chronic pain so please don't feel that I am looking for your pity. I think I speak for a lot of people who are challenged physically or in any other way that we want your understand, your compassion, for you to still see us before we fall from the tree to be blown away in the wind.


All the definitions I read mentioned that the term "cripple," is generally considered offensive. However, there was one definition in the Urban Dictionary that had a different take.

Top Definition. Cripple (Site:Urban Dictionary): 

A person who has a disability and embraces it, rather 
than feeling sorry for themselves. Yes, I am a Cripple, got a problem with that?

I read that definition and it hit me like a punch in the gut, the challenge to look deeper at my face in the mirror! Self-imposed questions fell like leaves in an freak autumn storm!


 Have I ever considered truly embracing my disability when 99% of the time, I try to separate myself from it? 

Can I live in pain and still be truly happy?

 Could I stop apologizing for the things I can't do and concentrate on the things that I can, no matter how short the list may seem? 

Could I teach my children to treat me with dignity but also treat myself with the same compassion?

Can I forgive my body for being broken? 

Can I see my face in the mirror and not be sad?

Could I be a strong, loving mother and know that I am my children's BEST MOM!


Can I feel worthy of love despite my curved spine?


 Can I decide to never play the "crippled card," ever again,  
TO NEVER refer to myself in a derogatory term both in my thoughts and out loud?

CAN I SEE "THE BEAUTY OF MY CHILDREN" EVEN IF THE LINES ARE BLURRED BY PAIN?


It's so interesting that in writing this post, my own perception of the word "Crippled," has completely flipped upside-down.

How could I possibly expect people to view me as someone who isn't broken, who isn't crippled if I couldn't see that myself.

Looks like I have some work to do! The first change will be to never refer to myself as crippled because I said it with complete disdain. I was being offensive and cruel. I need to see the brave woman I am for enduring daily chronic pain and that I can still live a life worth living! There will be tough days that will test me but I must continue to look up. After all, there always seems to be some leaves that despite the fiercest storm manage to hold onto the tree.

Monday, September 28, 2015

REFLECTED IN THEIR EYES

WHEN PAIN BECOMES YOUR CONSTANT COMPANION, everyone is your life will become an extension of this part of your journey. I know that as a mother, it breaks my heart to see my children or any loved ones in pain so I understand the feelings involved in being on the other side. It is my children and my loved ones that see me at my most vulnerable and see the pain etched in my face.

My son, Christian, especially has like an inner radar that can glance at me and just know if I am having a particularly rough day. His sigh is barely audible but I see my pain immediately reflected in his eyes, frustrated and helpless. Christian doesn't often share with me his internal struggle with the knowledge that he can't fix his mom but I know he suffers far too much because of me. At times, I am overwhelmed by guilt even though I know it is not my fault.


  It is with painful clarity that I see how my battle with chronic pain now affects my loved ones
 DAILY as well!  And just like my own emotions that dance precariously on the edge of a cliff....the people in my life also find themselves on the merry-go-round of emotions.

Most of the sympathy is directed towards me.....as I am the one carrying the heaviest physical load but if you look closely, you will see the layers of pain in my children's eyes just as vividly!



One day over the recent Christmas Break, I was sitting holding my little girl's hand sitting watching a show together. Malia could tell that I was having a very difficult time and SUDDENLY,  SHE BROKE, crying and yelling at God to please make her Mommy better. I tried so hard to console her, to remind her that I never have blamed God for my crippled spine. But at that moment, my nine year old who has been praying for me all her life just wanted "A MIRACLE". She wanted me to be able to swing her around, play tennis with her and run down every ball and most of all....ride like the wind on the most beautiful horses side by side and never stop. Malia's breakdown crushed me to my utter soul and I would have given anything to be better...

 JUST SO IT WOULD STOP HER HEART FROM HURTING ANYMORE!!!!


So, eventually, when her tears subsided, we held each other and Malia  hugged me the best way she could without hurting me as I can't really twist or fold into a proper hug anymore. Suddenly, I pulled her onto my lap just like when she was a baby. "Mommy," her eyes were wide open and so worried but I said softly, "Sweet pea, just let me hold you for a moment, and never stop believing that my pain will lessen, we must always have hope. And when Mommy feels like giving up, you must be strong and when you feel very low, Mommy will be strong and we will simply take turns going round and round as long as we need too. Have faith, my sweet girl!"

My daughter "MALIA" is caring, resilient and beautiful from the inside out but I long for the day that we can RIDE A DIFFERENT TYPE of "CAROUSEL," TOGETHER! 
Have faith, my sweet girl!!





Friday, September 25, 2015

"Living" with Chronic Pain: LESSONS FROM "SURVIVOR!"

"Living" with Chronic Pain: LESSONS FROM "SURVIVOR!": WHEN YOU LIVE IN A FAMILY THAT IS TOUCHED BY CHRONIC PAIN, EVERYONE MUST COME TOGETHER IF THEY ARE GOING TO SURVIVE!    Because, be...

Saturday, July 25, 2015

LESSONS FROM "SURVIVOR!"





WHEN YOU LIVE IN A FAMILY THAT IS TOUCHED BY CHRONIC PAIN, EVERYONE MUST COME TOGETHER IF THEY ARE GOING TO SURVIVE! 
 Because, being in pain every day is pretty shitty and living with someone who is in pain is also equally rough, so, in essence, you can't lose sight of the important stuff.
I have watched the show "Survivor," since the very first season and no matter if you are a fan or not, there are lessons to be learned from this show. The show itself has evolved over the years and despite players coming into the game that have often studied every episode, it is never fully predictable.
In fact, when you look past the drama of the outwit, outplay and outlast mantras, there are some true lessons apparent. 


LESSON #1: IN DIFFICULT TIMES, OUR TRUE SELVES EMERGE

 When people are stripped of their basic needs and their clothes become tattered and worn, so does their personality. No matter how hard they try,  personality traits will gradually become more illuminated and emotions openly raw. Some individuals become even more startlingly beautiful stripped of their make-up, designer clothes and comfort. But others will say and do things that are incredibly hurtful and cruel making us feel that we have somehow turned back a clock to watch school-yard bullies taunting their victims. Competitors have defended their actions in the past saying that they don't act that way when they are outside the game but most people would agree that it is in these challenging circumstances that their bare self is revealed.

 PAIN, ALSO, HAS A WAY OF MAKING ME FEEL MORE TRANSPARENT THAN I ONCE WAS. The urgency not to waste time and to feel present in every moment is with me 24/7. Even if the moment is to sit and simply cuddle my dog, i am still fully aware. I don't always have the patience to be diplomatic, I am far more blunt as frankly, I don't have the energy to put on pretenses. I may not be beaten down from living 40 days on an isolated beach but I am emotionally, spiritually and physically completely spent. Pain leaves me exhausted and it takes a lot of effort just to be sociable. I don't mean that I feel grumpy, it's just that I often don't have the energy for conversation because I wonder how long I have to mask the pain. Pain can escalate at any given moment so most days, I choose the sanctuary of my own home.



LESSON #2: BODIES ARE MEANT TO MOVE, EVEN BODIES IN PAIN!

In the game of Survivor, people must lay down their individual needs and work as a team for the greater good.The rewards show true joy in the moment of celebration as individuals are bonded together from their combined efforts to win a challenge. You see players push themselves beyond their typical point of endurance and the reward is even precious. I felt that on a recent bike ride that I took with my 11 year old daughter- it was our first bike ride together. Typically, I would sit in the yard or in the house and watch Malia ride her purple bike up and down the path behind our house, her joyous grin difficult to miss. One day, I had been having a better day and was feeling a little more like my former feisty self so I asked Malia if we should go for a bike ride together. Her face, though in disbelief, lit up like Christmas Day. She was undeniably happy but concerned about me in the same moment. Before I could lose my courage, I said a trifle recklessly, "Let's go, I'm already in pain, let's just go. And away we went, me rather unsteadily but gaining speed and courage with every second. It was glorious! We rode the path twice that day..

LESSON #3: NEVER TAKE LOVED ONES FOR GRANTED

The episode that never fails to move me the most is the one when the remaining survivors are reunited with their loved ones. There is a rare moment when alliances are put aside and people are moved by seeing their fellow competitors taken into their loved one's embrace. The joy is palpable! No one seems to really care how they look or smell, they just crave that touch from someone they truly love.. Watching this heartfelt moment, I feel my tears spill down my check, I always picture my loved one's faces when I am in the most pain and it is their love that pulls me back from the edge of darkness. I remember a moment recently when I was unwillingly engaged in a argument with my teenage son and it was over something rather trivial. I finally snapped and begged him to not to raise his voice, I have a more fragile shell than before and find conflict and arguments difficult to manage. "You (encompassing my closest and dear love ones in that "YOU"). YOU are the reason I keep going! 
YOU ARE THE REASON I KEEP FIGHTING in the moments when I can't find my own inner strength. The argument ceased immediately and without words, we came together in a hug. The one benefit of pain is that I fully appreciate the smaller moments, quieter voices, peace. Because of this, I have learned to pick my battles more carefully. I still must be my children's mother but I try to spend far more of my time telling them how much I truly love and accept them AND please, go fetch me a cold pack!

LESSON #4: STRIP AWAY THE STUFF!

Why do we need as a society things to be taken away before we finally (if we are being honest) appreciate people or health that mean everything to us. I think we live in a society that has become so disconnected, so cluttered, so vain (CONSTANT selfies anyone?) that we just live life thinking so much about what is ahead of us instead of what stands before us in that very moment. It is a lesson that is difficult to completely embrace until it is no longer there. We so often gather for someone's funeral but seem to put off making time to celebrate that person in life. 

I am certainly not stranded on a gorgeous island, I have plenty to eat but the pain I face daily has forced me to slow down and appreciate smaller, more intimate moments. Living with pain has stripped me of my ability to demonstrate worth in ways that I used to feel were necessary. It was my perception of what I now meant to my family and hearing the odd hurtful remark from my own husband at times (when he felt overwhelmed) that marked me as not being feeling valued. AND just to clarify, my husband does a tremendous amount of thoughtful expressions of  love but he is also human and being vulnerable makes you sensitive to every remark.
  STRIPPING AWAY THE STUFF CLARIFIES WHAT IS IMPORTANT; LIVING IN PAIN MAKES YOU APPRECIATE LIVING! It gives added meaning to any loving moment.


LESSON #5:  LIFE WILL GIVE US BOTH SUNSHINE AND STORMS


When the competitors first arrive on the island, we are struck by the beautiful images of the island and often hear it described as paradise. But when the grayish skies start to twist with licorice black clouds, you can feel the mood change as the rains descend. Survivors huddle together, drawing to draw both strength and warmth from each other. It will seem like the longest night imaginable and it becomes uncomfortable to see them slowly shut down until we feel their spirits break. 

There are times on the show when you see an individual check out and feel they have nothing left. You can see it in their eyes and feel them shut down. I identify with this feeling so vividly in the nights when I start to panic when there are no  more distractions and my meds haven't dulled the fierceness of the pain so we are left alone together. Sometimes, I cry for hours because I have no place left to put the despair and don't want to wake my husband yet again. Those moments can be incredibly dark but somehow, I usually fall asleep from exhaustion in the wee hours of the morning and start all over again the next day. I often joke that I somehow keep going like the energizer bunny!

Being in pain has definitely slowed down my life and sometimes, I feel I can't bear another minute of these stabbing, PIERCING PAIN that explodes down my spine, up my neck, through my arms and shoulders and often down my legs. I am never without some degree of pain and most times so many places in my body that I have lost track. But if I give up, I will miss watching my daughter's eyes light up when she sees me coming home from school. I will miss watching Survivor with my husband. I will miss the antics of our new dachshund puppies in their joyous play and how they run to Mom (me) when they are tired and need a cuddle. I will miss seeing my children dance, my daughter singing a Spanish song or hear my son play a Rachmaninoff prelude so beautifully, that my heart physically hurts. I will miss seeing the jagged peaks of the mountains, the crashing ocean waves, the serenity of relaxing in the middle of a lake in my kayak. I AM NOT YET READY TO LEAVE!


LESSON #6: DON'T GET COMFORTABLE! YOU NEVER KNOW WHEN LIFE WILL BE SHAKEN UP!

When the tribes are divided or shaken up, it can be a huge challenge to find new alliances, a new way of  surviving! We rarely see, except sadly in third world countries, people actually hungry. It is uncomfortable to see real people in distress and it is so often the reason that people in any type of pain will try to maintain a brave front as long as possible. IT is a person's ability to cope with adversity that will often dictate their experience with whatever their personal challenge is. When I could no longer teach or maintain a very successful music studio because of my chronic pain, I was both angry and terribly sad. I think the most difficult thing for me in my journey with chronic pain has been acceptance and then more importantly, finding new ways of living. My son encouraged me to start a blog so when I am feeling up to it, I try to write. I have more time to help my children with their many self-tape acting auditions and have found tremendous self-worth and joy being involved with this. If I had been teaching, I wouldn't have had the time and this new freedom afforded me the privilege of accompanying both my kids to set when they booked an acting role.  We don't always like the way the cards have been shuffled but it is up to us to make the best of the new hand we have been dealt. Even better, there will still be moments of meaning. YOU WILL FIND A WAY TO "DEAL!"

FINDING PURPOSE IS VITAL WHEN YOU ARE STRUGGLING WITH A CHALLENGE LIKE CHRONIC PAIN!


LESSON #7: FIND WAYS TO BE USEFUL AROUND CAMP! DO WHAT YOU CAN!

The game of Survivor seems to often favour the people with the most physical attributes. But as the game goes on, mental power and inner strength prove just as valuable in solving puzzles or keeping morale strong on long rainy nights. Value comes from doing what you can to your best ability with the most positive attitude. You shouldn't have to toot your own horn, even if not everyone else can see what you bring to the table, just know that it is enough for you to know your own value and personal effort.
. I still struggle with the realization that my worth is not tied up in my body's ability to be physically able. However, I am at the point that I know my husband is still lucky to have me as his wife and my children as their mother. It was only recently, that I finally understood how uncomfortable and sad I used to make my children feel asking them if they were still happy that I was their mother because of my worsening physically disability. Somehow, for several years, I equated my value based mainly on the activities I used to be able to do and my new reality. Yes, I needed help to hold my babies and lift them out of the swing but that was simply the way it is. I may need to ask for help to carry the laundry but I am still damm good at folding it!

SO, DESPITE THE FACT THAT I CAN'T DO THE SAME THINGS AS BEFORE, I TRY TO DO EVERYTHING I CAN! HOW MANY PEOPLE CAN SAY THAT ABOUT THEMSELVES?



LESSON #8: THERE WILL BE UNEXPECTED GIFTS:

Survivors often get to partake in a reward that sees them giving back to the island community. Simple gifts like a soccer ball, bicycles, art boxes, backpacks etc. may be handed out to deserving children that live on the island. The survivors often spend the day with these kids and it is both emotional and heartwarming to see how moved they are by being part of this experience. It is the survivors that walk away with the unexpected gift!

The thought of how I viewed my self-worth makes me cringe today and even worse that it took me years to feel that my kids are so fortunate to have me as their mom in any capacity.My own Mom and grandmother reminded me daily of my worth as a mother and thank God, I finally understand.

 NO ONE COULD LOVE THEM MORE, NO ONE CAN PARENT THEIR TRUE SELF BETTER THAN THEIR MOM! 


We have seen each other in our most broken moments and our love is still fiercely protective. My own children had to teach me to have compassion for myself and to stop apologizing for something that was beyond my control. A complete stranger at a dinner event a few months ago shared with me that she felt my pain was a gift to my children because it has taught them to be more compassionate and developed their inner strength. Her comments brought immediate tears to my eyes, in all my years of suffering, I had never thought of my suffering as an unexpected gift. So, now I try to model for my children the value that I have for myself....my kids had never questioned it but were just waiting for me to catch up! And on days, that I struggle to find that inner value, I remind myself that simply being here to tell them that I love them is enough.

  IT WAS A TRUE AHA MOMENT TO VIEW MY PAIN AS A GIFT TO MY CHILDREN.

 
LESSON #9: IT FEELS LIKE CRAP TO BE PULLED FROM THE GAME!

Whenever a survivor is injured and needs to be pulled from the game, you can the see the pain and disbelief etched in their face. No one likes to be pulled out of a game that they have dreamed of playing for many years and want to see it through. It's taken awhile to realize that I too have been pulled from the game before I was ready to leave. I wanted to be the mother that picked up her babies and held them high, twirling them around making them giggle. I never wanted to caution my toddlers not to run and hug Mommy if she was wasn't sitting down. I wanted to be the mother that played endless tennis with my competitive daughter but instead I have to be grateful to hit with her for five minutes on a very good day. So before, I jump in line for the self-pity bandwagon that I have frequented, I have to accept that things are different- because life as I knew it is different. I hate typing that last sentence honestly but I have realized that I need to be more accepting of this fact. However, even with acceptance, I can say that it still feels like crap that I am on the sidelines of life most of the time. I WISH EVERY DAY TO BE BACK IN THE GAME!
.


LESSON # 10: THERE ARE DAYS THAT, DESPITE BEING SURROUNDED BY BEAUTY, YOU MAY BE FULL OF DESPAIR.

I am human and even when I try everything I can to be and feel hopeful, there are days that I am full of despair. Today, the pain has been relentless and my family is 10 hours away by car on a well deserved trip to see ailing grandparents. It wasn't feasible for me to go because driving for hours in a short period of time makes my pain worse but still, waving goodbye tore open my heart.  I hate when my pain scores another goal so I am trying my best to enjoy the peace and serenity but the house is too quiet for me. The first couple of days, I managed on my own and even found a few productive hours. But today, the pain is out of control and I have never felt so alone.

My daughter kept face-timing me and I kept declining the call because I didn't want her to worry about me when there is nothing she can do. My daughter is so incredibly beautiful from the inside-out and finally seeing her sweet little face just about did me in. I so wanted to be there, to be the one to do her hair and help pick out her outfit for dinner. It was a tough moment for both of us.

 I can't give up hope that my situation can improve but until that day comes, I will hold onto each precious moment with the tightest grip possible. These are the things that allow me to move forward, to live another day. Some days are worse than others- LIKE TODAY- but there always seems to be at least one moment that is still exquisitely beautiful that I am glad I was here to experience. It is human nature not to fully appreciate what we have until they have been taken away but every now and again... it doesn't hurt to be reminded! Living with chronic pain has changed everything the way I lived my life but I have found a way to survive with God's grace that he still has a purpose for me.
I HAVE SURVIVED, I AM A SURVIVOR!