Life

Wow!!!!! We are here again this year. This day, this time last year I would never have expected to be where I am at. Honestly, if you would have asked me seven years ago if I would ever have a life filled with adventure, the truest love ever imagined and friendships that would fill my longing heart I would have replied with a worried laugh. I would stop and think in wonder, how could that life be mine?? Well, it has!!!!!!

For those of you who do not know me personally I went through a very difficult life changing experience that brought sadness and a sense of fear and lonesomeness I cold never imagine. I was twenty-seven. I was alone and I had Lupus. Would I be able to be loved the way everyone deserves or will my disease run off every open heart that I would come in contact with? I thought at times who would love someone with challenges that may increase over time. Could someone look past the ever presence of illness and wrap their arms around me and carry my heart so carefully through the bumps and bruises of life? It took some time and a lot of contemplating in order to come to peaces with who I am and to accept I was sick but that did not mean I could not experience life and every ounce of it that had been destined for just me. Then one day I woke up and everything was so clear to me and I realized I am special and there is love waiting for me and a family of friends who would surround me and protect me no matter how close to the burning fire we would get. 

I removed my heart from its locked box in my chest and stitched it onto my sleeve. I wiped the sleep for my eyes that blocked my view of the word and stretched my body so that I would be able to accept all love headed my way and I waited. It did not take long but as the next few years marched on love engulfed me in its thin veil of beauty. It touched every inch of who I was and always had been. Sadness was replaced with laughter and lonesomeness was replaced with acceptance and joy. My life truly began and life was and still is an amazing adventure everyday I am here with my loved ones. 

Hallelujah

I hated roller coasters as a kid! My mama would try to talk me into riding them but at the very last minute I would hop over the seat and patiently wait for my mama and sister to ride and collect me at the exit post. I did try them and at one point even grew to tolerate them but the thing I disliked the most was that tick tick tick on your way up and the moment where you slowly crest over the top of the giant hill and downnnnnnnnn you would go!!!!!! My breath left my lungs and left me scared silly!!!! I remember in high school being the one person who would pay full admission just to jump over that little seat!!! I do not find myself in a position where I am having to jump over roller coaster seats anymore but there are still hills I come to in my life where when I crest and start the roll down my breath leaves me stunned and waiting for that one gasp that will bring me back to life. 

Today I felt the breath leave my lungs as I slowly read a post from a friend. Another Lupus patient lost his battle at the young age of 36. The post shared the details of his daily battle that raged on against his heart and kidneys. It took me to a few years ago when one of my sweetest friends Briney lost her beautiful young sister to Lupus. What I struggle with the most is that this will not be the last time we loose a brave soldier to this battle. Loss for us sends a wave of sadness and anger through my system and slowly as those feelings creep away I am engulfed in fear......I have this disease that has claimed another life and I am 34 and he was only 36. There is no cure and as I have mentioned before most medications we use to treat our Lupus can cause side effects that leave you wondering if the progression of the disease itself feels worse than the medication used to save your life. It is a double edge sword that cuts so deep and leaves wounds that will scar you for the rest of your life. 

I am kneeling here in front of all of you, in front of the world, asking.....begging you to not forget about us. Remember us when you are running down the street because most days we can not run to the other side of the house. Remember us when you cough in public because those germy germs wreak havoc on our sensitive immune systems. Remember us always but pitty us never. Be our friends, our support system and the ones who will love us always. Do not get frustrated when plans have to change because we are not feeling well today. Jump for joy and celebrate with us on the days we do get out into the world! Offer kind words of encouragement because those are the words that help us get out of bed in the morning. Be patient as we tag along behind you and remember to turn around and just smile letting us know you know we are still back here. Some will shake this off because they are just one person and one person can not make a difference. They are so wrong! All the difference in the world has been made because of one person standing up and stating to the world, I am here to help and I will be heard. 

As we mourn the loss of another Lupus family member let our hearts fill with comfort that our brother in pain is resting peacefully and will not suffer through this disease anymore. He has closed his eyes for the last time leaving a body that may not have always been kind to him but also leaving the world a bit better because of the contribution he made as a long time survivor.