Life's lessons at times taught through the hard way. Through my battle with autoimmune disease I find inner strength in my life through the courage, hope and the natural discovery on what it truly means to be a survivor.
You have only been gone for a few weeks but now you can see from where you are that you were gone for a lot longer. I am sorry that you had a disease that no one could help you with. I wish that something could have kept you with us a bit longer before you slipped into the world of the unknown. We never left you alone. Mom and Aunt Gail were there almost everyday and they would visit and talk with you even if you did not recognize them. You raised daughters who would never leave their mama alone in this world. Us grand kids would come and visit when we could and I tried to talk to you even up until the end. We would continue to celebrate your birthday and each holiday with you. Those are the types of children your daughters raised. We all stuck together as a family and we said goodbye to you as a family. You were never alone even though at times you felt as if you were surrounded by strangers. We never stopped loving you and we never will.
I can close my eyes and see you in your old kitchen clogging away, teaching Holly and I the best you could. I think Holly and I both got our love of dancing from you. Oh grandma, I can close my eyes and hear you call my name. I remember every time we talked I asked how you were feeling and you would always reply fair to midland. It makes me smile just writing it out. You were so beautiful in this world. Your smile lit up every room and I could hear you smile through your voice even when I was so far away. You always knew what to say to make me feel better and you stuck beside me as I went through some of life's toughest hurdles. You were always one of my biggest fans in this world and I yours.
I don't know how to let you go. I was looking through my contacts on my phone and there you were. I wanted to call it just hoping to hear your voice one more time. I still can not remove it but maybe over time I will be able to. Thank you so much grandma for teaching me lessons in love and life. Thank you for raising wonderful daughters who in return raised us. We will all be ok but we will miss you especially through out the next year as Mother's Day comes and goes. We will miss you at Christmas but will continue with your cookie making tradition. We will miss you on your birthday and everyday that follows. You were the song in our loves and now we have to learn to march to the beat of our own drum.
One more thing grandma.......lean in, I have a secret for you.......I love you, don't tell anyone.
As a little girl I looked at getting older as this amazing thing that happened every year. It was marked by family and friends, presents and lets not forget, CAKE! I looked forward to getting older. I celebrated the milestones just like everyone else. I turned sixteen and I started driving. I turned eighteen and started college. I turned twenty-one and yes, had my first drink and my first date with the Porcelain Gods! It was exciting and you could just feel that you were on the brink of a new challenge, a new adventure but once you pass your special milestones and you really grasp what getting older means you see how life is going to continuously change and not always for the better.
I have been doing a lot of internal searching and have been trying to find my way through a world that seems so scary and lonely right now. I lost my grandma a few weeks ago and I have struggled with the loss. She was the best grandma in the world and I have so many amazing memories but thinking about them still brings tears to my eyes so I am locking them in my heart where they will be safe and never forgotten. I miss her so much and I am so thankful for the 33 years I had her in my life. I will carry on her traditions through out my life and some day the tears will turn to smiles and laughter just as it should be. I am just navigating the waters the best I can at this point. I do think there are times when I need a giant purple unicorn inner tube to help me float along the way.
So, as my birthday approaches this year the joy I felt as a kid is missing and the reality that I am getting older every year and knowing that life does not wait on you to be ready leaves a little bit of a sour taste in my mouth. I know this taste will pass and I hold out hope that one day birthdays will become magical again and even at an older age, wishes can still come true.
We are taught very early in life that when we hurt someone we have to say we are sorry. After that we need to be kind to the person we hurt so that they continue to know how sorry we really are. We never want to hurt anyone or make them cry. We never want to make anyone angry and when we do we have to ask them for forgiveness.......this again is in the form of I am sorry. After this initial lesson is taught to each and everyone of us it helps to shape how we perceive others and how we want to be treated. For me I know I never wanted to hurt someone as a child and it has followed me through my life. I never want to make anyone sad or feel hurt by the things I say or the actions others see from me. In my mind and heart it is common sense. I would never want others to hurt me so why would I ever want to hurt them?
When I reflect over my life ever since I was diagnosed with a chronic illness, sorry has developed a different meaning in my life and others who suffer on a daily basis. Sorry tends to become an easy word shared by me to others for things I really should not feel sorry for. I should not be sorry that I am unable to go out and run around for an entire day. I should not have to feel sorry for medicine that keeps me alive making me so sick. I do not want to apologize when life is moving so fast and I physically can not keep up. Most important, I should not feel sorry for having Lupus. I hurt every moment of everyday and at times I close my eyes and picture myself listening ever so closely to my body........I imagine that my little cells and my little immune system whispering to me they are so sorry for hurting me but they are just so confused and they are not sure where to go in the mess of all that is my Lupus.
I used to feel so sorry for my loved ones because they had to see me hurt so much and they would get frustrated when they did not understand. I used to apologize for not being able to make it to certain functions because it was to much for them to even step a side and try to see how sad it was for me to begin with. My pain and suffering made everyone so sad and even angry at times and because Lupus could not say sorry I always thought it was my responsibility to make THEM feel better and lost sight of the fact that I was left with no one making ME feel better.
The cruelest thing about my Lupus is that it is not like anyone else's Lupus. Everyone's Lupus is as unique as the individual it affects. That is what makes Lupus so challenging and leaves you feeling so alone. You can be in a room full of people and there will be times when you have never more alone in your entire life. You will be in an emergency room and no one can really help you so you become their medical mystery case for that shift. Doctors will record your symptoms and listen but are never really able to help the disease itself, they just make you as comfy as can be. Family members start to see you as a burden and instead of just walking away punish you with feelings of anger and remorse that they carry everyday because someone they love needs to be taken care of a little more than expected. See, you can see where someone who is sick feels like they always have to apologize for something that they never will be able to control.
You see, Lupus along with other autoimmune diseases flare up at the drop of a hat. The weather changes and you feel yucky, you did not sleep enough so you feel yucky and the little stressors in our everyday lives cause huge reactions from our diseases. Should we be sheltered from daily snags in our lives or hidden from all things that stress us all out? No, we just need to be handled with a little more sensitivity and a little more caution. We are like that very special plate that has been handed down from generation to generation. You bring it out to show everyone its beauty and so that everyone can see how important it is and enjoy it BUT you handle it with gentle hands and you may need to be little more careful with it.
I have Lupus and I would climb to the tallest mountain if my legs would let me and yell it for all the world to hear! I am not afraid of my disease and I know I deserve so much love despite my disease. I am beautiful even thought I carry around a giant purple L. I have a purpose in this life and it may not be the one I started out with years ago but I have grown into this purpose through understanding myself before and after my disease. I am not alone and I know there are others who have so much love and compassion to give to me. I should not be written off because I am sick but should be embraced because I have something to teach you. Do not run from me or hide from me. Do not bully me or be nasty to me. Love me ever so gentle with immense amounts of kindness and who know, maybe one day I will change your life not because I am sick but because of who I truly am despite being sick.
I opened the window this morning and I took in a long breath and the cool damp air filled my lungs and brought joy to my heart. A smile crept onto my face and for a moment all was well with the world. Tim and I had breakfast and just like every Saturday morning I saw him off on his bike ride. My world is exactly as it is supposed to be......filled with love and life. Then I remembered that not everything in this world today is right, there is great sadness that has filled my friends world. Today she will lay her husband to rest and her children will say goodbye to their dad. This is a reminder that we have today but tomorrow has never been promised to any of us.
The beauty of life and this world greets us every morning but there are so many mornings we take this for granted. We forget to tell our families we love them one more time before we step out of the door and into the world. We forget to show simple kindness to strangers because why worry about that today, we always have tomorrow. What if you didn't? What if you knew that all you had was today? What would you do? Would you sleep in past the calling of your alarm? Would you call in sick and spend every waking moment drinking in the love of your family? What would you do if you didn't have a tomorrow?
What we would each do does not matter, what matters is that you have a list and the list continues to get longer and longer because like the saying, why do today what you can put off until tomorrow. Stop adding to your list and do something right now! Spend a little more time with your family and make sure every moment they know how much they have been loved. Smile! I have heard people say that one simple smile from a stranger turned their entire day around. Make someones day with this simple gesture of warmness. Eat dessert before dinner and then again after. Show kindness to yourself. Accept your faults and love the moments in life that have made you who you are today. Forgive yourself for your shortcomings in the past and remember that many people love you just as you are in this moment. Be thankful for what you do have and stop worrying about what you don't and remember the only reason your neighbors grass is greener is because they do not mow it.
We each have such a limited amount of time in this life. We do not know when our last day will be but we can prepare the world we leave behind by touching everyone's lives you come in contact with. Do not make your mark on this world by how you leave it, make your mark by the memories others will carry on. Love, laughter and kindness, you can not think about those words without smiling. So what are you waiting for? Decide today that those are your priorities and if for some reason your tomorrow never comes at least you didn't put off today what you could have done tomorrow.
Tonight Tim and are watching a documentary on a specific rally car driver. He is sloshing in the mud and is just having so much fun! I have ridden in the race with Tim and loved every minute of it. One time we ended up on our side as we made our way through the course. Tim had told me before I got in the car that if we start to roll I am not to put my hands up and better right before I got in. I didn't put my hands up but boy did I laugh! Oh, and I didn't pee myself, hehehehe!!! There wasn't a moment of fear, only excitement of moving fast! Buddy Dennis, you will know what I mean.Tonight I told Tim that if I could go back in time and IF I didn't have Lupus I would become the first girl rally car racer and I swore to him that I would be great! That is one of the only times I have ever mentioned if...........................
Such a simple word but such a turn it makes in your life when you say it..... if. If I had more money, if I finished school, if I started a family younger and IF I didn't have Lupus. If...........if..........if..........it makes me sad when I think about if's not because what my life could have been but sad because I feel almost ashamed of saying it. You see I do not feel sorry for myself when it comes to being sick and having Lupus. I suck in that bottom lip, pull up my big girl pants and as Tim would say, "suck it up buttercup!"
Lupus changed my life at such an early age. I was such a baby when the doctor told me. I was only 22 and at that age I don't think I could fully comprehend what was going on. I didn't know the toll it would take on my body and soul. I didn't know that the decisions I made then would affect how I feel today. I was not told that the chemo that makes my immune system at least a bit better would enable me to have children years down the road. I didn't know that pain medication could become addictive. I just didn't know. I was young, having fun and no one else around me was sick. So I went on and as years went by I understood my disease a little more at a time.
Today over 10 years have went by and I learn something new everyday about my body and how Lupus affects everything from my mind to my joints in my toes.......yes, my toes!!!!! I had no idea I even had those joints there!!!!! It has been a long road and sometimes a sad road but it is a road I would never have missed. My disease does not define me but it has made me who I am today. Life is hard, days can be long and nights can be excruciating but they are who I am and to love love me is to love me with Lupus.
Today we lost a family member. No it was not a grandma or a grandpa, not even one that walks on two legs but instead the kind that walks on four. His name is Boskey and he is the fluffiest, most gentle and loving dog in the world! For you to really understand my family and how we just love our furry friends I need to let you in on a few little family stories...........
My favorite story before I was born is about a cat my mom and dad had. My mom loved the cat but my dad did not. Well, who could blame him....the cat peed in my dads shoes, ONLY my dads shoes!!!! I am surprised that cat even stayed around as long as he did! Well, my dad was in the army and was being stationed in Anchorage, Alaska. So, they packed up their belonging into one old van and starting from Ohio drove to Alaska and even brought the shoe peeing cat along. At one of their many stops to stretch their legs, grab some gas and a snack or two they opened the door of the van to check on everything. Everything looked good so they headed back out. Finally my mom realized something was missing and asked my dad if he had seen their cat. He said no and kept driving. My mom was a little frantic looking for the fur ball and eventually she looked out her window. There, right outside her window was the cat hanging on for dear life!!!!! His paws were caught in the van door! My mom told me that all she could see was his mouth moving meow!!!!!! Of course they stopped the van and pulled the kitty in. Yes, it still peed in my dads shoes!!!!!!
After all of that we still had pets as kids. The first dog I can remember having is Arrow. He was a beautiful black dog and from what I can remember, a sweet and loving dog. My first memory of cats are two cats Holly and I had, Tom and Jerry. Those poor cats!!!!!! Holly and I were soooooooo young and we would dress them up in doll clothes and squeeze them all the time! They would fight us and eventually Holly got scratched and yes, she had cat scratch fever! No, I am serious there really is an infection related to cat scratches and they call it cat scratch fever! When I told that to Tim he did not believe me at first but my mom supported my story and diagnosis, hehehehehe.
Our love of pets continued to grow as we got older. My dad married Suzette and our first pet as a family was Chelsea. Chelsea was a beautiful Golden Retriever with beautiful light colored hair. Chelsea was a sweet pup and she was with us when Jeffrey and Stephanie were born. Chelsea was an outside dog so we all got play with her in the yard. In the summer time we would run outside, throw our socks around and run barefooted all over the place. We would go back to collect our socks when we were called inside but for some reason one sock would be missing. We had no idea what had happened. We figured Chelsea ran off with it and was using it as a chew tow. That summer when my dad was planting our garden for the year he stepped in a pile of poo. It was no ordinary pile of poo, it was a pile of poo with a sock in it!!!! Chelsea ate our socks!!!! The mystery was solved and from that point on socks came off at the front door before we ran out to play.
Growing up we did not have dogs just for pets. My mom married Dave and Dave was an avid hunter. He would go hunting every winter and bring home a deer that would stock us up on meat for the year. When I was young I was so sad when he would kill something until we had dinner later that night. I would ask Dave what kind of hamburgers these were because they were the best.......he looked at me and said Bambi burger's. My sadness for hunting ended right there and my appreciation for hunting began. His best weapon was not a gun but a Beagle. The best Beagle in the world and we named her Queenie!She was such a loving pup and boy when she found a trail she never left it and this ended with Dave bringing home more dinner! At this time we also bread Golden Retrievers and we were able to keep one of the puppies because he ended up having seizures. So, his official name on his papers......Lord Seizure Lays A Lot (we called him Ceaser)! He was amazing and picked up any trick you could throw at him!!!! To this day we remember the amazing Ceasar and the fun we had!
As we all grew up it became apparent that all of my sisters and brother loved animals. My sister Stephanie is allergic to cats but that did not stop her from bringing home strays. She was not allowed to have them inside so she would go into the garage, hunt them all down from their hiding spaces and snuggle with them until her arms were so red and itchy. All of that love led her to become an assistant to a vet. Now Stephanie is married and you bet they have some cute pups in their family! Now my brother Jeffrey loved animals but not like Holly and Stephanie. He would hold them and pet the dogs but what he REALLY loved were penguins! He loved penguins so much as a kid that Stephanie drew him a picture of a family of penguins in art class !!!! He didn't just love them, they also just cracked him up! When we went to the zoo and saw penguins he would just laugh and laugh at them! It was so funny and we will never let him forget his silly love for those black and white little fellas.
This brings us back to today and our loss of another furry family member. Holly and Russ picked Boskey out before they were married. Boskey was their first child and he was a good one! They were strict from the very begging which led to no jumping, biting or misbehaving. They raised him to be the best dog ever! One thing he always did to me was as soon as I walked into the door he would take my wrist in his mouth very gently and would basically hold my hand a he would take me to all of his toys! He also was an amazing snuggler. I could spoon him and he would just lay there and let me pet him as much as I wanted. He slept with me at night and played with his Russ all the time. Boskey also would talk to you after a long day at the office. Holly would call me right before she walked into the door so I could hear him greet her and tell her all about his day. When Holly became pregnant with Lauren we all worried about Boskey and what kind of family dog he would be. He was big and could take up a whole room, how would he make room for a new little one???? The day finally came and Lauren was brought home to Boskey and they became best friends. Lauren would lay on him, pull at him, pull up on him.....anything you can think of when you think of a kid with a pup is just about right. He took it all and loved it and even shared his puppy pillow with Lauren. He was the best family dog ever. When Mia was born, again they became best friends. Boskey loved his two little best friends and was such a happy family dog. His tail curled and his hair was fluffy. I could brush and brush him and he would still need to be brushed more!
Boskey was a patient puppy and a kind soul. His last few months have been tough because of his health and the hardest decision Russ and Holly have ever had to make was made and today Boskey is at peace. He is running with no pain. He has the largest and best chew toys there are in the world and I just know he has a steady stream of treats that he just can not stop eating! He is happy and content but we are not. Boskey was our family member and we will miss him forever. We have our memories but we will not have a play buddy anymore. Time will keep moving and life will happen but today we stop right in our tracks. It is time for us to be sad and remember that fluff ball that could never be brushed enough.
As much as we try to shelter ourselves and busy ourselves with the upcoming holiday you can not help but to notice a change in the world as we know it. From a sense of sadness and uncertainty that gripped each and every one of us on Friday as the news came in, we were left stunned as a nation gripping with the realization that our tiniest members are not always sheltered from the ugliness waiting for them outside of our loving embrace. It is the happiest time of the year for so many and slowly grief fell on us as a country and covered our joy with sadness.
Most of us are not mourning for the loss personally because we have not lost someone we love but we are mourning with the thoughts of the little ones we still get to love. Some feel guilt that as the new year rolls in. A new year full of firsts, laughter and love with their children is at the front door waiting to be let in. How did they get so lucky and how devastated would we be had the roles been reversed?
Friday night all I could think about was my little princess Lauren. Her smiling face that is speckled with baby deer spots (her freckles) and how her voice and laughter is so innocent and full of hope and her blues eyes shine so bright every moment of everyday! She was just a little younger than the precious children affected by this tragedy and next year she will be entering Kindergarten. I allowed myself for one moment to think about what would life be like if her bright light was blown out before any of us were ready. My heart broke and my breath was stolen from my chest. I remembered the last hug I gave her and how I wiped her tears as I left for Arizona. I thought of all the stories I have read to her and how there are so many more out there to share with my little red head angel and her beautiful baby sister Mia. I knew in that moment that I was lucky because my life with Lauren and Mia has really just begun and I still have time and magical moments to share with them! They will ride their first roller coaster (I think Mia will cry like her Aunt Danica), try so many flavors of ice cream and will be able to experience the joys of growing up and I will be there to cheer them along the entire way!
I thought of Suzette and how she goes into a school building every morning with the hope of touching a little ones life. She leaves her life behind every day so that she can educate the doctors, lawyers and future teachers of our world. She loves them unconditionally even when they have naughty streaks. I can not say that she would give her life if she was faced with this situation because she already has.....every moment of everyday when she enters her classroom. She not only has four kids of her own but has twenty five new ones every fall. Those are her children just as much as we are and the love that is poured out everyday is what changes lives and our world.
We will continue to feel sad and question why and be thankful that almost all of us have been spared and our families will be together. We also must celebrate the joy that our most innocent loves bring to our lives. I want them to stay young for as long as they can. I want them to be protected from the anger and confusion we see so many times as adults. Let us all celebrate the gift of life....young and old and let us remember that there is eternal beauty in all of our homes and hearts and that is the most powerful gift we can share during one of the most difficult times our nation faces and during one of the most magical times for the millions of little ones still embraced in our hearts.
