A Letter to my Son from His Lupie Mommy

A Letter to my Son from His Lupie Mommy
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My Mountain, My Lupus column

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.

letter for alex
Maui 2015 Alex and  Mommy

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.

LUPUS Quote Toni Braxton

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.

Love,

Your Lupie Mommy

Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Bridget Gardiner resides in Savannah, Georgia, having moved from the mountains of Santa Cruz, with her two loving teenage sons. She is the founder of the Facebook support community and blog “My Mountain, My Lupus” where she uses stories of her everyday adventures to bring greater support, awareness and education to all lupus warriors throughout the world. She has been diligently compiling this collection of short essays for a novel, “Living with Lupus,” revealing not only her own personal struggle but interviews with others that live their lives with lupus. Bridget is currently working on the first ever Annual Lupus Retreat tentatively scheduled or June of 2017, where the goal is to allow lupus warriors and their families the ability to have a guilt free vacation with other families that go through a similar experience. Single mother, activist, adventurist, mentor, lifetime lover of learning, lupus warrior.

2 comments

  1. Tammy says:

    What a beautiful and empowering letter.

    I can relate to this as my step mum also has SLE and she has a little boy who is only 6 years old.

    You’ve been incredibly brave and strong. Keep going and take care!

    Tammy xx

    • Bridget Gardiner says:

      Hi Tammy! Sorry for the late response as I have been moving and was then caught up in Hurricane Matthew. Thank you so much for commenting and my heart and prayers go out to your step-mum and and her son! It can be really tough to have lupus but honestly, I don’t know what I would do without my boys and my friends that have become like family! Its their support and now, the friendship and support I find through my writing. Thanks again for commenting and following. 🙂

      bridge

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