Writing this is proving to be much more difficult than I expected. I thought I could just sit down and the words would fly and my fingers would type them as fast as they could, and that I'd have so much to say that they wouldn't be able to keep up. I do have a lot to say, though, that's not the problem. The problem is that I have so much to say and suddenly I can't seem to remember how to put my thoughts into sentences and write them down. Maybe it's because of the sensitivity to the subject and the feelings that Lupus brings up in me when I talk about it. Or maybe I can't figure out what to say because I want it to be perfect. This is for you after all, and you deserve only the best.
Being diagnosed with Lupus at age 16 came as a shock to us both. I was confused because I didn't really know what Lupus was. I was more angry at the fact that I couldn't go back to school right away. You were upset. You feel guilty sometimes because you can't understand why God's plan included me having a chronic illness with no cure. You don't know why that if anyone in our family was going to have it, it wasn't you instead. I'd like to apologize for how my diagnosis makes you feel sometimes. I'm sorry that you have now have to be more worried than a "normal" (but really, what is normal?) parent when I go away to school, or even just for a weekend. What if I forget to take my meds? What if my kidneys decide to shut down again? What if I have a flare? As someone who is always asking the "what ifs" of every situation, I know that it isn't fun. So I'm sorry for all the worries you have when you say goodbye to me when I go somewhere. Please don't ever apologize to me for the way you feel about my Lupus because the guilt goes both ways. I feel guilty when I see the expense of all my medications or when I think something may be wrong so I tell you - only for it to turn out to be nothing to worry about. I don't believe that the unnecessary guilt we both feel will ever completely go away, so hopefully it makes you feel better that we're in it together.
Next, I'd like to thank you. I would like to thank you for being my main source of inspiration and motivation. Thank you for being my rock, my support system and my biggest fan. No matter what I want to do, you are always in support of me. You helped make it possible for me to find a way to be able to leave our home state to go to college and pursue music therapy. That's what I wanted and because I wanted it, you wanted it, too. You push me every day to be a better person, work a little harder and give a little more. When I can't speak up for myself or am too afraid to, you help me do so to get the things I need. When I feel embarrassed about my illness you remind me that I have no reason to be embarrassed. You help me every day to see that Lupus can't hold me back from doing what I want (99% of the time) as long as I take care of myself. Thank you for yelling at me when I forget to take meds and reminding me what could happen if I continue to forget. I'm 18 and even though I know it's not true, I sometimes feel like I'm invincible and I need that dose of reality to get me back on track. Thank you for nagging me to drink my water because one day a long time from now, I will miss that voice that I resent so much now.
And now for the grand finale of this letter.
People tell me I'm a fighter - that I'm brave and I'm strong. They tell me that it's so amazing to see someone my age overcome something like this and that it's inspiring that I've been able to manage my illness and continue pursuing my dreams. It's time for me to share with the world where the fighter in me comes from. Because I don't do it alone. I have the power of 1,000 men fighting behind me and that's why I'm so strong. Because that power is you, mom. You may be one woman, but you're so much more than that. You are a woman with an extraordinary amount of love, strength, and wisdom. You inspire me to want to inspire others and it looks like I've accomplished that, so I wanted you (and everyone else) to know the number one reason I've come so far. So here's to you, Mom, and to every other mother out there with a child that has Lupus or any other chronic illness. Please know that you are the reason I am who I am and that my gratitude is endless. I love you.