Blessing In A Dragon-Like Disguise

In reply to a mom talking about her son, who has stills disease (February 2006):



My name is ZOE, one of a few in this group. I am 19 and live in Spokane as I attend college. I want to give you a brief story about me and Stills from a younger perspective. There will be tangents all over the place cuz I don't have a lot of time, as Spring Semester starts tomorrow.

I was diagnosed when I was 18, in Nov. 2004. It was my first semester of college. I have struggled a lot here and there. There will be many peaks and valleys to come. As a mom, I can not know how you are feeling, but I am very close to my mother. She is a nurse and I know it breaks her heart to have her only child be so sick and she can't do anything to make it better, or so she feels.

I have amazing parents that have been here with me, not in presence, but in love, support and spirit, as I learn to live with stills. Knowing they will always be there. Knowing how much they care. Knowing they would do almost anything for me is exactly what I need. They help keep me on track of meds and doctors appointments, etc. I love them for that and that is the support I need.

I am very proud of you for being a part of the group. I know the emails are discouraging at first, especially when you are reading about the possible future of your son, but you can not live in denial of this disease. You have to be prepared for anything and everything. Every day I play worst case scenario in my head. I don't want to be caught off guard. I know it seems like a depressing thought, but when you get past the idea at first glance, you realize it can be a life saver down the road.

This disease effects everyone differently. I randomly met someone with stills who is in LA trying to be an actor. He goes most of the year not needing any medicine or doctors appointments, unless there is a flare, which may last a month or two. His life is amazing and he gives me hope.

Stills has changed me and my life, and it always will. I wanted to play competitive softball forever, and now I can no longer play. I wanted to be an athletic trainer, I got into one of the best athletic training programs in the country, and had to drop out. I am now an English major who can't take more than 5-6 credits at a time. My life has been altered, but it has NOT been completely taken away from me. This is not the life I saw for myself, but I will have to say I feel lucky. I feel blessed. Mind you, it is my faith that has carried me this whole way, but my faith has been strengthened due to stills, and for that I thank God.

I appreciate life so much more than my peers. I appreciate the good and the bad. I appreciate every new rain fall or snow or meal that isn't from the hospital. I appreciate being alive. I appreciate being able to drive. I appreciate being able to go to school. I appreciate living in a house and experiencing the college life. I appreciate every friend I get or even had for a short time. Everything is a blessing, and that is something you never could have taught your son. Your son isn't cursed to have a challenging life; he is blessed to know how to appreciate this life.

Every moment will mean more to him. Every love, every relationship, and every class he finishes, every task he accomplishes will mean so much more. His family and parents will mean so much more. He is and will continue to mature in ways you didn't know were possible. Yes he will endure more than most, but it will only make him stronger. His life will mean more to him, and he will use his time here on earth more wisely than many couldn't even dream possible. This will be hard. You will walk down the roads not often taken with him many, many times, but it will only make all of you stronger. It will bring you all closer together. You will appreciate this world and this life in ways that are unfathomable to most. At first glance the unfamiliar, the unknown, is very scary. But with each others help, support, and love you will prevail.

Giving up what society tells you you need will be hard, but with every loss, it might get a little easier, and you will learn that there was never a loss at all, but rather your emotional, mental, spiritual, and intellectual gain. You do not need what society tells you you must have. Life will be simpler, and more joyous with everything you endure with your son. Every day will be a miracle that you will appreciate more and more. To experience light's true brightness you must endure the pitch-blackness of the dark. Stay strong, keep fighting. Living with stills is more than possible, it is a blessing in a dragon-like disguise.

The more God encourages me in subtle ways to give up my life and my dreams, the more I am blessed with living God's dreams and a life for Him. To society I look, at first glance, like a quitter, or a loser, but I am not. I am simply surrendering to Him and to the life he GAVE me, yes gave, as in a gift. I don't know you or your faith, but I just wanted to share mine.

Whatever you believe, hold on to it. I want you to know that you can either look at these emails in fear, or you can be amazed at the strength your son will build up, and be so very thankful you are not experiencing what others currently are. Hold your chin up. Use this time you have now to grow with your son, to love him, to support him. We have but a few days here on earth. Use them as wisely as possible.

You are a great mom. Your responses are natural. But, you are also going to need to build up some strength. Your son needs to see in you and your confidence that everything is going to be ok. He doesn't want to see you afraid, because if he does, he may be more afraid too. I pray you receive strength and wisdom through everything you and your son and your family experiences in the next few years. God bless and take care. Any more questions, please let me know. I am busy, but God and this group come first.

In His strength,

Zoe




Days after this I dropped out of school. Days after that I fell to the floor and cried out to God to fill in the gaping hole I felt like I had inside. He has.