A Gift

50 Replies

Driving in the Momvan last night my daughter asked me if animals died like people die.

This is a frequent conversation in our home lately, stemming from my rash of hospital stays and influx of relatives and friends helping to care for me and mine.

She wanted to know if animals lost their colons and uterus too. If they stayed in hospital beds, and if their animal families could visit them.

We arrived at our destination and my son unbuckled and laid his head on my shoulder. He didn’t have to say a word, I knew he just needed to be near me. Death talk does that to him.

My husband, the rock as of late, has been shouldering more weight than I can bear to watch. And after discussions of funerals and what I would wish, and wills and advance directives and how he would cope as a widower, I crumbled inside to put such a burden on those I love.

The pit of my stomach hasn’t been filled with dread over my health, it’s been filled with dread over what my health as done to those around me. It’s gnawed at me with a fierceness. I’m the one who should be caring for them, and it’s very hard for me to play the role of invalid.

But today, I finally got to lift some of that weight. The specter of death hovering in my daughter’s head. The anxiety in my son’s mind. The uncertainty in my husband’s heart.

Remission.

The doctor said remission. And in his office I broke down, and he touched my shaking hands, and he assured me Lupus was, indeed, in it’s cage, locked.

The long road that started with a hospital stay in August of 2009, the tests at UCLA where I ate radiation, the bowel rest hospital stay, the exploratory surgery, the Mother’s Day hospital stay that broke my heart, the colon and gall bladder surgery where my kids were not allowed to see me, the emergency room visit where I cried in anger at the sky because I was again hooked up to tubes and ivs, the total hysterectomy where I mourned my womanhood, and the diagnosis where we stood dumbfounded and planned my death…now, finally…

Remission.

I feel like I have been given a gift I don’t deserve, but my family does. I feel like the world is different in so many ways. I feel like I owe so many people so much…but most of all I owe these people around me the world.

And I will deliver.

50 thoughts on “A Gift”

  1. Melissa Wardy

    Ooooh, Erin! I have goose bumps. By far my favorite word today. Remission. Remission. Remission.

    What wonderful news, as you certainly are most deserving of it.

    So happy for you!
    Melissa

  2. sarah

    What a happy relief; I am so overjoyed for you and your family. I cannot imagine what the past year has been like for you, your husband and your beautiful children–I hope the years to come bring nothing but health & happiness to you & yours.
    .-= sarah´s last blog ..Joining the Army =-.

  3. Deborah

    Erin, thank you for sharing this wonderful news and all of your strength, joys and sorrows through this journey. You are a gift to all who know you.

  6. vickie (@inmyheadstudios)

    never met you. you have no idea who i am, i imagine. but i am crying tears of joy for you and yours as i have followed these misadventures on twitter and your blog this past year. huzzah for remission!!! long may it reign! xoxo

  7. Davidgs

    Oh wow. I’m so happy to read this news. I first started following you as I was going through my own series of devastating medical crises. And I have followed yours with mine.

    But that word, remission. You told me “I’m going to make Lupus my bitch” and you are doing just that. Good on you!

    Now. My turn?
    .-= Davidgs´s last blog ..Voices of Lupus =-.

  8. MFA Mama

    So. Damn. Happy for you.

    As worried as I’ve been from way over here, I can’t imagine how you and Aaron have managed to get through this, and I’m so glad the nightmare finally seems to be coming to an endpoint. For now, forever, for however long it lasts, your entire family deserves the peace.

    P.S. I know you actually just staged all of this so Aaron would give in on the dog issue. Well-played.
    .-= MFA Mama´s last blog ..the treatment plan =-.

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  10. Sprite

    The amazing and wonderful thing about you and your family, Erin, is that you *Gift* each other. You love, you share, you work things out, you find solutions, you talk things over … and you overcome great obstacles.

    As a family.

    I wish you great joys, deep laughter and much silliness.
    But most of all, I wish you more love than you know what to do with and a body and family overflowing with good health.

    *love* Simply love.

    Sprite
    .-= Sprite´s last blog ..Dear Democrats &amp Republicans =-.

  15. Leila Radan

    Erin you have me sobbing. I cannot even begin to imagine what this has been like for you and your family and the news is amazing and VERY MUCH DESERVED by YOU! You are an inspiration, a shining star… take it from me who’s known you, oh lovely Queen that you be, since ’05… you DESERVE this good news and SO much more to come!

    Always thinking of you, vibing, praying and expecting nothing less of breathtaking miracles flying your way… much, much love always…

  17. Mary (azsky13)

    Congratulations on your remission. It is truly a gift, of life renewed. Are you still going to Disneyland? Now you can really enjoy the day with your kids.

    Take care and live well!
    .-= Mary (azsky13)´s last blog ..Saying goodbye =-.

  20. Candace

    WOW! I cannot imagine the joy you must feel. Congratulations. Now you can exhale and embrace your world with the full knowledge that life is a gift. I will keep you in my prayers. Thank you for sharing.

    BTW, I enjoy your writing very much even though your political views send me into ORBIT! hehe.
    .-= Candace´s last blog ..Coffee Table Talk =-.

  21. jodifur

    Congrats Erin!

    I’m in lupus remission too, and it is indeed a wonderful place to be. It takes work though to keep it up, and I’m sure your doctors have you on a good plan.
    .-= jodifur´s last blog ..Shoe Friday 95 =-.

  22. Mandy

    Do you congratulate someone on remission? I guess not, even though it seems like the thing to say. I’m so very happy for you and your family. Best wishes on the road to regaining all your strength and vigor.
    .-= Mandy´s last blog ..Jakey is Three! =-.

  24. Editdebs

    I’m so happy for you. I have prayed for you and your family–and I’ll continue to keep you all in my prayers. I value your honesty, humor, sense of right and wrong, lovingness (is that a word?), strength–so much. The world is a better place because you’re in it–glad you’re going to be here for a long while!
    .-= Editdebs´s last blog ..My First Post =-.

  26. Andrea Jurcak

    Erin,
    You said “I feel like I owe so many people so much…but most of all I owe these people around me the world.

    And I will deliver.”

    You already have in words, looks and love. Remission the best word one can hear.
    Hugs to you friend…. Hugs to you!

  29. Jess

    Now I know we’ve never gotten to experience the sweet embrace of one another (and trust me, I smell like water lily & oranges…you can thank Alfred Sung for that), the pool of happiness and relief that I was thrust into when I read the word “remission” on Twitter, was so remarkably overwhelming, I don’t think even the most sensual embrace will ever properly express my joyous emotion in that moment.

    Your positivity, it seems from what we’ve seen here in your place, has never wavered, even in the darkest stages of your journey. I can say, at least for myself, that I could always sense your determination to kick your body’s ass and turn the tables back in the direction you wanted them to be.

    Now come on over here. Give mama a hug.
    .-= Jess´s last blog ..Husfriend- The Moth Huntah =-.

  31. Pinky

    My wife was recently diagnosed with Wegener’s Granulomatosis.

    It’s fatal 100% of the time. It robs you of the ability to breath and kills your kidneys, eyes and ears.

    Most people that are diagnosed with it die within 6 to 12 months.

    I’m devastated…

    My wife always teased me by telling me that I will outlive her. She does that partly because she has a job where she sees lots of people die, and party because she teases me that I was so nervous when we first met that I was somehow ‘lucky’ that she stayed with me. I know that sounds cruel, but it’s not… I was so frightened that night… I was surprised that I ‘got the girl’ but she saw something inside of me that made her decide that I was ‘the one’ and 30 years later, we’re still here…

    But not for long.

    I am trying to be ‘the rock’. I don’t know if I can be… Thanks to her insurance we have to wait a month to see a specialist (and Sarah Palin says there aren’t ‘death panels’ now?) as her symptoms appear to get worse.

    I sit and wonder of the ‘responsible corporate citizen’ up stream contributed to her illness or outright caused it. Hence the rant on the ‘So it starts with me’ thread.

    She is taking it very well. She is now teasing me that it will be funny to watch from heaven as I flounder through meeting another person to share my life. It is good hearted teasing…

    I guess most couples will have to face this at some point in their futures.

    It’s amazing though how many sick people there are around here and around the country in general. Living here has been a lesson in American politics that should send shivers down peoples spines…

    Happy for you remission. I have personally seen many people in your condition and know their joy and fear at this point.

    Enjoy this moment. Hopefully it won’t come back, and if it does, you can beat it back into the cage once again.

  32. PartlySunny

    Man, and I thought my struggles were rough. I remember my dad once telling me that at least I knew that what I had wasn’t terminal (good point). At the time it was annoying. Now, not so much. I’m so happy for your recovery. Hope it continues.

    And, this is for Pinky: I don’t even know what to say. There are no words except for I’m so sorry, and please know that there is one more person out here in the universe who is thinking of you and will most likely be doing so every single day. Take care.

  35. Amanda Roberts

    This morning I cried tears for you and your family. Neither of which I know, but who has somehow touched my heart this morning. Congrats on the great news and good luck fighting the battle.

  42. Tami

    That is amazing news. I am so happy for you and especially your family. You have been on my mind a lot the last month, and in my prayers. And who are you to say if you deserve it or not. When exactly did you become the determiner of deserving? Again, I am so happy for you. I will share with my Mom. I updated her just last week about what has been going on with your poor body. I hear it’s been very warm in California the last couple of days. Enjoy the sun on your face!!!!!

  43. Kristi

    That is one of the most beautiful words I have ever read. Remission, remission, remission. Prayers that you get to spend LOTS and LOTS of years with your family.

  44. stephanie

    I too, have come through a dark path with Lupus to find a blissful time of remission, remission….I hope yours lasts long and you live well. We certainly have gained the perspective to cherish each and every moment and breath and the courage to make a difference in many deep and thoughtful ways. Your time with you family will now be a time of healing for all, followed by joy and grace unbounded (my wish to you and your family).

    And Pinky
    May you feel grace and love through the twilight….

    Stephanie

  47. Kristin

    I’m sort of starting on the path that you begain in August of 2009. Last week my rheumatologist threw out the word lupus for the first time. Totally rocked my world. I”m too afraid to even research much about lupus, and expect will have the beginnings of some more answers soon. But you story — your REMISSION — is inspiring to me. Congratulations to you and your family. Sending best wishes from ATlanta–Kristin

  48. Library Lady

    Erin, I am ashamed to say that I have been afraid to read your posts because your lupus journey has brought back bad memories of a time 16 years ago when I was pregnant and the doctors thought I had lupus.

    I never did have any problems, and odds are what they found was related to the thyroid condition diagnosed a few years back. But it has haunted me ever since.

    So how glad I am to have clicked on your blog this week and seen such a GOOD thing.

    It’s a gift you are well deserving of, and one I know that you won’t waste.

    Mazel tov and abei gezunt–stay healthy.

  50. Amy @ Bitchin' Wives Club

    Remission is a word I am still waiting to hear for my recently diagnosed colitis… but SO happy that you have heard it and are living it. It is amazing what you have been through in the last year and I am relieved and gladdened for you and your family to finally be out of the woods.
    .-= Amy @ Bitchin’ Wives Club´s last blog ..My Dream Vacation… With Kids =-.

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