A Letter for Alexander
Hello my love. First and foremost, you’re not in trouble. 😉 In fact, I am writing this letter to let you know how proud I am of you and how much I love you . I know its been hell these last few years and I wish I could take it all away. I wish it truly were an invisible disease and that the one thing that is hurting you, wasn’t the same thing that is hurting me. But it is. As a parent, the last thing I would ever want is for you to feel lost and alone, or feel as if you can’t change the world we live in. Because you are not alone and you can make a difference.
The day you were born I made a promise to the universe to protect you from pain and intolerance as much as I could, and until I was diagnosed with lupus, I made pretty darn good on that promise. I even kept things from you with hope that I could buffer the sting of my own reality. Of our reality. I need to tell you I am so sorry for lying to you initially about my diagnosis. I thought it was better to tell you I had arthritis, than to have you look up the crazy things that are and are not lupus. WebMD makes it so much scarier than it really is.
Yes, it is scary. Admittedly, I am scared too.
Ultimately though I want you to know that its OK to be scared. I heard a quote in a movie this morning, “The brave may not live long, but the cautious do not live at all,” and I felt it important to share that with you. I want you to know why I push so hard and go against my doctor’s advice sometimes. Why, even when I am not feeling well, I still try to get out and do stuff with you guys.
For the most part I try to be everything to everyone — but there are some days I just can’t do it.
Unfortunately there are the days that I miss. Choir concerts, field trips, school performances. I can’t tell you how much it hurts to miss those milestones in your life. Equally important, it hurts that you have to see me this way. I didn’t plan for our life to be this way and there are times that I forget how hard you try in hope of making me smile through my pain. You, my dear boy, are an overwhelmingly awesome kid — to say nothing of your compassion and patience, which quite literally blows me away daily.
I want to be able to say this to you in person as well as hold you in my arms like when you were little, but alas you’ve grown a bit too big for silly mommy hugs and tear filled kisses. So I chose a letter instead. The other day we were talking about moving and, after a big fight, we both broke down crying. What you said to me that night will stick with me as long as I live. You said you would do anything to make me healthy and happy. As soon as I walked out of your room, I cried for the remainder of the night. In spite of everything I had been trying to shield you and your brother from, that night it truly hit me. I am not the only one with lupus in our home.
Ultimately, when you love someone with lupus, you have it too.
I am so sorry, baby. I was so caught up in what was happening on the surface, that I missed what was happening in the background. Parents are supposed to be the ones who teach their children everything they need to know. But you my love, have taught me some very important lessons. Life, whether good or bad, doesn’t just happen to us. We are active participants, teaching and growing through every second of our lives. I am proud to say that you are my son. More importantly, I can not wait to see the wonderful man who I know you will grow up to be.
Your Lupie Mommy
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