It is time...........

The day has finally arrived. Two and a half years in the making one little letter has changed my life for the foreseeable future. We had decided together that fighting for my rights as someone who battles a disability everyday was worth the sacrifice the two of us would have to make. That first step was not decided by just myself but by the collective thoughts and hearts that the two of us shared in those dark silent moments where every thought hit the ground and shattered the silence sitting there between us. A decision was made based on what was best for us and more importantly, what was best for me. 

The selfishness we both found ourselves drawn to finally had to take a back seat for the time being. The big dreams we had for our lives would have to pause for a brief moment in time. That moment was brief when you compared it to the time we had left. What was once considered brief was too much for you and I to withstand together. The time and care I demanded of you was no longer yours to give to me. Instead of fighting with a united front the battle lines were drawn and I found myself on the outside looking in. The battle would continue on but with one less fighter fighting for my life. 

I will go in front of a judge in two months to plea my case. How has my disease affected my life? The question truly should be how has this disease not affected my life. From the loss of employment, independence and a home that was all mine that once was over flowing with love. How do you take thirteen years of change, challenges, heartbreak and situations where you were left alone and sum it up in a matter of moments. The pictures of the brief moments of pain and loss now must be shared with a stranger by a stranger that no longer is a piece of my life.

I will be surrounded by unconditional love from my best friend to the new amazing rock in my life that never lets me wobble alone. However, I will look upon your face and pray worth all of my heart and soul that you will do this one last unselfish thing for me before our lives truly part forever. I am afraid to see you, afraid of what you will say and even more afraid of what you will not say. I feel a sense of weakness calling on you when all I want to do is move on and really move past the healing process and into the arms of the man who will undoubtedly love me just as I am at this exact moment in time. 

Until then I must ask you for the last time to go into battle not ahead of me, not behind me but right next to me one step at a time. This too shall pass and the light at the end of the tunnel is calling my name. I know once I step into the light that is shining far in the distance it is warm and welcoming not because of the radiating sun but because of the hearts that will be waiting for me at the end and on the other side of my new beginning to a new life for myself and my loved ones. 

I will leave you in the tunnel and will finally close the door that must stay open until that exact moment. Once it arrives, I will not look back. I will not waste one more moment or tear on what might have been but instead embrace the ones in front of me. I will see their hands gently reach for me and as we intertwine our fingers I will finally know I have found my family and the building blocks I have searched for all of these years were always here in my heart but forgotten in the fear and sadness of the life I have been muddling through. 

No more I say. On this day I take my life back. I find my true independence with the love of friends and family and the one special one that exists in a fairy tale that has become the life I now lead......a true reality. I am someones daughter, aunt, sister, niece, friend and true love and those are the relationships that had time stolen from them and now I will water them daily and continue to watch them grow as my body emotionally and physically heals from the damage done over the last few years. 

With one more hello the final goodbye will be said and life will officially start over and a new book will start for my brand new life and whatever may come my way. One thing is certain.......I am more than ready for that one special step into my new life. Until that moment comes I will settle for the day dreams that are slowly becoming my very own reality, Stories once only told in the inspirational stories of others. Now those inspirational stories will belong to me and I will carry them around not as a badge of defeat but as a badge only I can earn honorably. .

First Day

Tomorrow you will wake up. For a moment you will be in the groggy stage of the morning as the sun crosses your face. In your heart you feel it.......a change is about to sweep in and change everything about your life. It is a change we all have already faced but now you will see it through your mama heart. You will get her up and please stop and watch carefully because this moment will only come around once in her life. The clothes will be important even for a five year old and of course you will want to make sure she is cool if it warms up and is warm if it cools down. Tomorrow school will start and her future will truly begin.

There will be moments of chaos as you check off your mental list everything she will need in order to get through the day. You will check, double check and triple check. You will convince yourself you are missing something. You will watch her eat her special breakfast and put on that backpack that looks way to big compared to her tiny stature. Hugs and kisses will be met with hugs promising to never let go. You will slowly walk her to the end of the driveway and wait patiently for the bus. There may be moments where you want to scoop her in your arms and carry her back inside just so you do not have to share her with the world. That baby of yours is no longer a baby and her true independence will shine through those beautiful blue eyes. They will pierce your heart as she finds her way to an empty seat and waves one last time to her mama. 

There is no need to worry. She has a heart of gold, a spirit that can not be contained and jabber jaws like her Aunt Danica. She is a fiery, independent red head who will take on this world with a fury and dance through every special moment. All of that comes from you. Take pride in raising an intelligent, kind and beautiful little person. Those arms she slipped out of, she knows will still be there when she bounces off of the bus and back into her mama's arms........the place she calls home.

Night

Silence is heard throughout the house as I sneak downstairs taking every step lightly as not to wake anyone sleeping soundly behind the closed doors. I stir in an uncomfortable position and I just pray with all my heart that movement will actually result in relief. I am often left pondering why the nights are so tough in comparison to the days. Is it because I am forced to acknowledge the pain that has settled in from a long day and numerous nights of interrupted sleep? The pain that is easy to forget during the day when the light guides me through the daily obstacles is realized in the silence, stillness and darkness of the surrounding night.

I long for that soft blue hue to peak through my window announcing the day has begun. I will find myself in the daily activities that have become a comforting routine. The voices that alert me that the house is once again filled with laughter and love remind me that I am not alone in this world. I will find the comfort in the sun and the promise of another day in this world. 

Until then I must patiently wait. Minute by minute and hour by hour pass as I struggle to stay in my own skin. My Lupus is haunting me once again through the shadows in the dark corners of my mind. I beg for mercy and for an ounce of sleep until I can no longer muster up the strength to embrace one more thought. Then, in pure exhaustion, I will drift off for minutes, maybe even hours if I am lucky to a place where I no longer hurt and in those moments no longer have Lupus. It will be a short but sweet respite of what has mirrored my life for so long. I will hang on to those moments throughout the day until I lay my head softly down once more in hopes of finding that magical place of comfort and peace..........where pain no longer exists.

Bucket List

As we prepare to bid farewell to yet another summer we remember the moments under the sun and the warmth of the rays felt on our cheeks as we smile up to the heavens one last time. Days grow shorter and we slowly brace for that first leaf to fall to announce the coming of the cool nights and brisk days. The smell of Fall will soon swirl around us as time moves along. As we say goodbye to Summer and hello to Fall we are yet another season closer to the end of a year and welcoming the hopes of a new one.

Lately I find myself thinking of the past and comparing this time last year to the moment I am in today. It is amazing the night and day difference that can happen in just one year........a blink of an eye in life's great journey. As we celebrated in the backyard with friends I never imagined that my home would no longer be my home in exactly a year. The one who had been a part of my life for better and for worse silently slipped away over the coming months. Family that I had grown to love as my own would be complete strangers and friends would be forced to move in and out of my life. 

Pain that encompassed my heart left me speechless and altered my world. I slowly found an inner voice that had been there all along but had be silenced over the last few years. Hope rose with a new dawn and the darkness started to fade away. Where I once begged on my hands and knees for time to stop so I could catch up, I found myself running faster than it could keep up. Heartache gave way to an acceptance of myself and allowed the acceptance and love of someone else. I have fallen back in love with myself and with a heart like my own. Laughter again fills my days and longing for someone has filled my nights. I am left filled with the endless possibilities of tomorrow all because of what was left yesterday. I can truly see my future and have been able to forgive the past.

With this renewed sense of myself I am left questioning my wants and needs at this time in my life. What I had tried so long to forget has come full circle in my heart and I know where my path in life is truly meant to lead me. New beginnings result in new dreams and goals and tonight I sit here and I have decided to create a new Bucket List for my new life. Lets throw caution to the wind and take a trip into the future one step at a time............

Celebrate Lulu's 6th birthday and be there when she blows out her candles.

Celebrate Mia's birthday and be there when she blows out the candles.

Put my negotiating hat on and meet with the State of Arizona to determine a settlement for the final time.

Go into my disability hearing confident and accept the outcome regardless of what it may be.

Ride my bike five days out of the week until the end of the year.

Enter my first bike race.

Marry the man of my dreams.

Start a family with my best friend and love.

Continue to nourish my friendships and watch them grow.

Welcome new friends into my life.

Continue to emotionally grow into my physical body.

Raise awareness for Lupus and other chronic diseases.

Accept the days I am not well and gracefully handle them snug as a bug in bed.

Take my medicine no matter how yucky it is.

Leave my heart open to love.

Forgive others.

Camp under the bright Winter sky.

Cut our Christmas tree down.

Take more time for my parents and siblings.

Be a more honest me.

Love myself just as I am today and everyday.

Smile until my cheeks hurt every day.

Continue to see the world in a positive light.

Allow acceptance to flow from your heart and soul.

Stop to really take in the moment at least once a day.

Travel to Italy.

Raft the Colorado River through the Grand Canyon.

Buy my first home.

Visit Albuquerque during the holidays for their small town parade.

Go to my first ASU versus UofA game.

Camp with Ruff and Taggart yet again.

Make it known to my two best friends who have taken me in that there is nothing in the world that could ever even begin to express my true thankfulness for their unconditional love and support but I will remind them for the rest of our lives.

So on.....and so on......and so on....wherever the wind shall blow me......I am free to fly.........

I wish I could tell myself.......

Dear Danica,

Today you turned sixteen and there is so much I want to tell you about the life you have ahead and what you can expect. These are some of the freest and most impressionable times you will ever experience. Take a moment right now and close your eyes. Click.......start there with your first image locked into your heart and lets step forward.

You are about to feel a loss that will forever change who you are and shake the foundation you thought was so safe. In a matter of days you will no longer feel invincible as you do at this one moment in time. Death will touch you on the nose ever so gently and bring you to your knees. She will leave the world early in the morning and you will wish you had done so many things different. You will hug her goodbye and you will never hear her voice, dance in her room or sneak clothes into the car just so you can spend the night. You will want to stay in for the summer, afraid to get into a car but go, she would want you to live your life. Laugh and cry as you go through her room and picture that beautiful smile framed with her brown curly hair. You will no longer want to just please your parents but her own. You are a daughter to them. They will never leave your life and will remain constant. That is one thing you can count on. You will loose her but you will not loose them. Remember her in smiles because that is how she will remember you.

Hang on tight to your friends, yes, those four that never leave your side and are up for anything at anytime. The five of you are so different but those differences help to sand the fine edges of your soul and fill your heart with what was once lacking. Sneak out on the warm nights of summer from the basement of Joy's house and run through the yard and down the dirt road. Sit and talk for hours as you all swear you hear someone coming. It is worth the chance of getting caught because those moments will carry you through some lonely times later in life. Many will tell you that once you graduate your friends disappear but within those friendships you find true soul mates. Time will pass and you will watch them grow. Be there for them to talk to and they will never leave your side even if you live thousands of miles away. Distance will part you but time stands still for all of you and life is beautiful because they taught you your first lessons in love. One tip.........REMEMBER THEIR BIRTHDAYS!!!!!

You are one busy bee! Between drill team, cheer leading and just running wild through corn fields you may forget to appreciate those moments. As you twirl on the field, shimmy those pompoms feel the moments under those Friday night lights. Take as much time as you need to understand that this moment will never come around again. Your body will age faster than you anticipate and the movements that come so easy now will be a struggle sooner than you think. You are free from the changes that are bound to come and nothing we do today will change that path. Enjoy the days and nights and smell the honeysuckle after a storm. Shiver in the first crisp breeze of fall and make those snow angels until your hearts content. You will have an amazing night on a snowmobile. Open your eyes and do not fear the bumps!

The little town you are so anxious to leave, well, you will leave. Do not get to excited yet because you will then spend the rest of your life trying to find that place called home in your heart. Take the small town values to the big city lights and shine just as you are. Do not be ashamed of where you are from or the family that waits for you to return. If someone does not accept them or the Midwest girl that strangers are drawn to do not think twice because they are not worth your time or your heart. 

Smile everyday! You will be voted best smile in a few years so let the entire world see it as you dance through life. Oh, and you will dance! People will remember you waltzing into their lives and twirling out of them like the sweet breeze of spring. Be proud of that aspect of your personality because it will allow you to see the world through extraordinary eyes. The future pain will bring clarity to the world around you and where one sees sadness you will see hope. Anger does not haunt you and forgiveness is given even before it is asked for. Others will stand behind you trying to see the world from your point of view and they will be afraid when they don't. You will challenge many but only a few will stay. That is ok because in those few you will find your forever family.

The way you see the world will draw others in and leave them trying to put their finger on something that they just can not pin down. Never let anyone pin you down. Love with all of your heart every chance you get. Kiss your first love as much as you can because it will not last and you will grow up and set out on your own. While finding yourself in the world you may feel lost, abandoned and forgotten but you are always on someone's mind. Your heart will break many times over and I wish I had more words of encouragement but it will just be something you will have to cry through and pick yourself back up because you are a beautiful, strong woman. During these moments you will feel as if you will never be able to put yourself back together but you will. With each crack in your heart a lesson will be taught and one after the other you will realize who is right for you and who is there to hurt you. Be strong and even though it hurts leave your heart open and do not wrap it up because the sting of today will result in the joy of tomorrow.

I have to break it to you ever so gently........mom is always right and everything she tells you, you will understand in the future. I know you will not believe me at this exact moment but go a little easy on her because raising two girls in high school is not easy and we give her a run for her money. Stay in a few extra nights and visit daddy and Suzette more. Dave will teach you how to ice fish and in that simple mundane moment on a dark winter day a light will be lit in your heart and the outdoors will become where you will want to be later in life. Love your sisters and brothers like you will never see them again. There will be times years will go by and the faces that resemble your own are the ones you see the least and miss the most so please memorize everything about them so your heart can hold on to them even when you are far out in the middle of the desert.

You are smarter than you think and stronger than you have ever imagined. Milestones may take longer to reach but when you reach them celebrate like no one is watching. At that moment stop right there and close your eyes. Click........another beautiful image is added to your ever flowing heart of images taken along the path of your amazingly, beautiful and strong life you have created for you and only you.

Love always,

The Older You