By The Grace of Time

Poems have been written in the name of its purity. Songs try to capture that private feeling made so public in our lives. It has been called a euphoric moment that we feel so deep and so instantly. A place we all long to be in and a moment we strive to keep so focused as time pulls us farther and farther away from that point on our map of life. In all its beauty when you brush the curtain to the side you see its resonating light and see the conclusion of it in pain and suffering. Once its gentle kiss on your cheek fades into the other moments written on your heart a scar is formed that will be carried through the rest of your journeys. It fades ever so slightly minute after minute.....day after day and years later the feeling is often completely forgotten. That is until you stumble into its path once more. Love roots itself in joy, flourishes as we feed it and can wither into something that once was so beautiful but now is blown free as the breeze carries each brown petal into the wind of change. 

In the deepest darkest moments of our lives we find heartache, pain and sorrow always where love once flourished. The harder we grasp to the dead petals that time has withered no amount of gentleness will recreate the beauty of the love that once was but now is no longer. In the scars of lost love we find beauty within ourselves. The love we once basked in from another must be recreated within yourself. The shine now can not be found within the intertwined hands of two. You must open those tightly clasped hands of loss and grief and reach to the sky as only one and show the world your resonating glow within. 

As the grief and loss is released your light becomes a beacon for others. The beautiful light you hold within yourself shines so bright and others are attracted to this light you emanate. The love you have always held within is the sole source of clarity. Clarity that allows the curtains that hid the pain of love disappear showing purity of your soul to others. You have become an open book that others are anxious to read and the rare find a place for themselves within your next chapter. Once more you are able to carry on and the tight grip that grounded you so has become a moment of your life that has allowed release and is the first step on your new journey. 

The Lupus Bride

Stop rubbing your eyes.......you read right......I am mere months away from being a bride!!!!!! I can not even begin to tell all of you the excitement that is a buzz in our home, our families homes and within our circle of friends!!!! Announcements have been made, showers are being planned, registries are coming together and alas the countdown begins. Anyone who has been a bride knows how exciting this time is but also the stress that is intertwined throughout the smiles and the well wishes. Weddings seem to bring out the best and worst in people. The stress is not only a burden carried by the bride and groom but anyone and everyone who is personally involved in this process. It is all very normal and when all is said and done every bride looks back on their day and reminisces how they would not change a thing. They must not have been a bride with Lupus!!!!

Everyone of us who suffers with an autoimmune disease can close their eyes and still hear the many doctors emphasising how important it is to remain as stress free as possible. Our diseases like to show their ugly faces when we least expect it and stress, well, it is the doormat that welcomes our disease to the party. We are told to make friends with those pesky little dust bunnies that chase me around all night in my dreams. Exercise when your body allows you and when it does not......listen very carefully and you will actually hear your body begging for the bed. As someone who loves to garden, dance and do everything the normal gals my age are doing, I must remember normal gals my age are not starting their days exhausted from the moment their eyes open and I am pretty sure they do not struggle to do something as simple as tying their shoes. So, I have decided that I am just extra special and the butterfly landed on my nose and may have stayed just a little toooooooooo long!

When the time came to decide what we were going to do in order to make our special day as intimate and about the bride and groom as possible.......we started to plan a wedding and reception here at home in Arizona. Two weeks passed and already I was stressing about the venue, the guest list and more importantly the cost. I was receiving information from family and friends who live out of state and most would not be able to make it all the way out here to Arizona. Talk about adding to the already forming stress ball!!!! So, with the absence of very important people in our lives we decided to reevaluate our plans. What do you do when you want to get married but avoid the hassle of planning an enormous party for everyone else but the two people who matter the most.......that is right, you hop on a plane and take a trip of a lifetime and somewhere in there tie the knot!!!! That is just what we are going to do!!!! The stress ball has been removed from my life. In its place you will find two tickets to St. Lucia to one of the most romantic and intimate resorts. A place where we will stand on the beach just the two of us and make the most important promise to each other in a ceremony just for two. At the end of the day the two people vowing to spend their lives together are the only two that matter and the most important aspect most brides and grooms forget.........the wedding may be fun but the most amazing thing I am looking forward to is the marriage.

Those who mean the most to the two of us, we have not forgotten about you. It will be a year of celebration that kicks off just the two of us amongst the Caribbean Islands but comes full circle as we celebrate with our Arizona family and friends when we return and finishes with an amazing reception planned by my mama and my sister in Ohio. 

Here is to Greg and I as we truly begin our lives togethr in a year of celebration and most importantly a year of LOTS of cake!!!!

Lifetime

He gently wakes me after I have fallen asleep on the couch. As I shuffle into the bedroom he takes my hand and makes sure I do not fall. The covers are pulled down and he gently turns on the heated throw that I snuggle into every night as though it is my life line to a restful sleep. I crawl into bed and he looks at me with those deep blue eyes and tells me once again that I am loved. I drift off to sleep to the sound of him in the other room still relaxing into the night.

In the middle of the night I cry out in pain and his gentle touch and reassuring words remind me that I am not alone. He asks me what he can do to make this moment pass. He takes my hand and rubs it until the circulation returns and the throb subsides. I lay back once more praying that it is the only disturbance of the night but reassured that if it is not he is a reach away. I do not fear judgement or harsh words from his mouth. The worry of unacceptance is no longer in my mind. What I now know is what unconditional love truly is and the acceptance from another so complete and pure.Love like this for someone like me is the greatest gift one could ever receive.

As I stare out the window the next day I think to myself how is this even possible? I thought I had been loved in the past; however, this is much deeper and uninterrupted. There are no conditions placed upon my heart. The worry I carried over the last year in regards to my health is nothing but an afterthought. Lupus is no longer the elephant in the room but an extension of myself that is seen as a lovely part of me that makes up the building blocks of my heart. There is no shame in the pain I feel anymore. The trips to hospitals are an adventure themselves that I no longer embark on alone. The medicine is a reminder on his phone every night and the wobbles I seem to find myself in often are something we can giggle about. I am free of all restrictions I once placed on myself and where those restrictions once were I find joy and freedom I have never felt. I now can see the true beauty within myself and all it took was the pure release only discovered when pure love enters your heart where fear once existed.

I am loved. I am loved with no conditions. My heart is in his hands for safe keeping. Home is in his arms after a long day. Life begins when the sun goes down and we find ourselves in the familiar routine of the night. Laughter is a permanent sound in our home and tears shed is a very rare occasion. After thirty-five years I have found what I have only imagined. As I am reminded nightly that I am loved I must say to you that you too are loved and in my arms you will always be home.

New Year Resolution

Even as an adult the anticipation on the very last day of the year excites me and leaves me with a feeling of anticipation!!! As the ball dropped I paused and kissed Greg and welcomed in a new year full of surprises yet to come, a family to start and a walk down a very special isle. During all the excitement in our new home I stopped to think about what we all set out to do.......change something by making a resolution to do just that. We now find ourselves at a precipice staring down at yet another resolution we are about to push off of a cliff and disappear into oblivion. What if this New Years resolution has nothing to do with changing something about yourself but actually accepting something else that truly exists in front of you three hundred and sixty-five days a year? I have pondered that tiny revelation and thought to myself that instead of dieting, taking larger risks or staying on task more often that I would focus completely and solely on myself........just as I am. 

It is the idea that has started to be passed down to our children because it was once passed down to us. We stop and remind them daily how loved they are and how perfect they are just as they stand in front of us today. Somewhere along the lines we grow into adults and realize not everyone thinks we are perfect. Instead we are bombarded from an early age that others think we are not good enough, smart enough or pretty enough. However, we are faced with a new year that encourages us to make the changes so we can fit more into a stereotypical role that society deems as beautiful. We could fret over all the imperfections in our lives and stare at ourselves in the mirror wishing that we were not who we actually are. 

That leads me to my new year challenge for all of you to take on and follow through. I request that instead of focusing on changing ourselves why don't we stop and look deep into our heart and soul and focus on accepting ourselves. Accept our flaws as if they too were gifts. Your nose maybe a bit larger but you inherited that from your grandpa who was a great man. You have wobbly bits......who doesn't?!?!?! I myself have Lupus and there is nothing I can do about it so I am taking on the daily challenge and the daily fight Lupus forces me into. I am going to embrace my limitations and NEVER feel sorry for myself. 

Let's all get together as a group and decide that we are perfect just as we are. No one can fault us for something that we already love about ourselves. Which leaves you to greater than life acceptance from each and every one of us and from others because can we demand unconditional love and respect from others when we deny it to ourselves???

Holiday Bells

Tis the season!!!! It is the most wonderful time of the year, or so they say. I am one who adores Christmas and would celebrate it three hundred and sixty five days a year. My best friend Krya and I start festivities in the summer when the heat bares down on us. We turn on the Christmas music and turn it up until the little ones give in and dance through the house with us. It is a time of year we long for. Not only does it give us a respite from the smoldering summer heat but allows us to rejoice and reunite with our families once more. Soon Greg and I will be heading out for a trek cross country that will end with open arms, laughter and love. As I address Christmas cards to my loved ones I am reminded of how hard the season of celebration can be for individuals like me who suffer from invisible diseases such as Lupus.

My Lupus tends to hit hard this time of year due to the around the clock celebrations, busyness that follows us like our shadow and the stress of making everything just perfect. I am reminded today of the frustrations we can all feel during this beautiful time of year. I am tying bows that will close my Christmas cards on the quest for card perfection. I am trying not to loose my holiday bells as I fight every loop I create and search for its buddy on the other side. I lost all feeling in my fingers almost two years ago to the date due to severe inflammation in my body tissue resulting in nerve damage. This makes tying bows quite a challenge!!! After a few flying cards I take a break so that those holiday bells I am on the path to loosing stay with me allowing me to giggle and enjoy the holiday cheer in my heart.

For my grown up Christmas wish this year I would like everyone who knows someone who fights so hard everyday of the year with a disease that you may not see find some much needed help from their friends and family. If cards are sent out a bit late and Santa finds his way to your house before the card does, find joy that your holiday was extended by a few days. If presents are not bought due to the inability to shop just rejoice in their presence because it has been a challenge all year just to make it to this point. Those Christmas cookies we all love, well, bring them lots of them!!!!! Ok, maybe that one is solely for me but who can resist those cookies?!?!?! It is time for family and friends and those of us who suffer need you everyday of our lives but we may need you even more during times like these. We long for normalcy and dread the look of dissatisfaction from others. Please be kind this holiday season and show compassion and love and reach out to those who need it the most. Most important, remember that this is not just a season for giving and receiving but a season to rejoice with those we love and find comfort in the familiar. 

From Greg's and my home to all of yours....happy holidays and may you find peace, love and joy this holiday season!

New Beginnings

I slowly boarded the plane and closed my eyes wishing that distance would remove this hurt in my heart. The pieces lay scattered all over my life and family was the healing presence that I needed the most. The brisk winter wind whipped across my face as I left the plane. It took everything I had not to crumple on the jet-way from emotional exhaustion. I held myself up and thought to myself will this pain ever end.

The mist is wiped from the mirror as I get ready for bed. Staring back at me is the same girl that walked off the plane looking for solace in the distance that separated my life. The hurt that I thought would never leave my heart has become just that.......pain from the past the is a distant memory today. I look around and I see our new home and find myself in a different world.

A year has gone by and I feel as though I have aged in a matter of months what seems like it would take a lifetime. I have been broken only to stand up and realize that there was absolutely nothing about me that was broken, maybe a little scratched but not broken. Today as I look at my reflection I am healed and the pain of yesterday is a moment in the past. 

I have grown up so much over the last year. I have accepted people just as they are and wish for them to be nothing else. I have found strength within myself where it had been hidden for so long. Every morning I wake up and I am excited by the endless possibilities of what the day may hold for me. In reclaiming myself I have discovered love that I never knew existed. I have rediscovered hope, joy and love. 

I have found new acceptance of my Lupus and realize that it is not a condition of myself but an extension of who I am. I have seen scary times in the emergency room over the last seven months but in return I have felt the healing power of my own energy from within. In the next year I am prepared for surgery and have accepted the new challenges Lupus has bestowed upon me over the last few months. I do not feel discouraged at all but instead feel ready to battle anything my disease throws my way. I am not defined by Lupus, I am defined by who I am with or with out it. 

Thankful

I did not come from a charmed life. I grew up in a two bedroom apartment in my younger years with my best friend and arch enemy, my sister. The two of us were showered with unconditional love at every turn we made in life. My mama would choose to go without new things for years so that we would not have to wear shoes with holes in them to school. She scraped all of her extra money together so that we could grow up as normal as the kids down the road in the beautiful housing developments we longed to live in. My sister was the athlete at a young age stretching her talents from soft ball to the much dreaded summer of soccer while I danced and twirled through the years. Hand me downs were like Christmas and at times were our new clothes for the up and coming school year. If you could miraculously transport yourself back to my child hood I think you may have a preconceived notion of fear and anger and jealousy for those around who had things we did not. However, I hate to disappoint you because that is the last thing you would ever find.

If you were to ask us then if we thought of ourselves as poor and helpless and needing so much more than what could be provided we would stare at you dumbfounded. For we thought we were the richest children alive that had everything they needed and those small items we wanted, they were just wants and on very special occasions those wanted items would show up miraculously in our lives. As we grew up and family dynamics changed our simple needs never did. 

This month is  month of giving thanks for what we all have in our lives. Love, acceptance and the presence of daily on going laughter. I am blessed to have been brought up the way I had been. I knew love and that love continues to grow stronger everyday. I find old relationships being renewed and building again from the ground up. It is here I feel true unconditional love that never wavered even when I through it was completely gone. I may face a rough road ahead with my Lupus but I would never wish it away from my life for it has helped to create a more solid and powerful simple me. I will bear this disease with grace, honor and unwavering strength because I know I am never alone. I still find that unconditional love around every corner in my life now........even if it is thousands of miles away. 

My thankfulness overflows through my heart and out to my loved ones. I am happy and proud of where I come from and the parents who raised me to be the strong, independent women you see before you today.