My Daughter – NMO patient

I’m an avid reader of the NMO diaries.  My hope, when I open the page is to hear that Jenna, Christine and Erin are thriving and helping all those diagnosed and struggling with this disease.  Encouraging words, daily life experiences and hope. But sadly, Erin has really, really struggled the last two years after the birth of her beautiful son, Allen. She hasn’t posted as much as she used too.  I used to enjoy hearing her positive, upbeat, hopeful attitude.  I’m sure this has weighed heavily on her mind among the others things she has not been able to do over time.

So Wednesday, December 4th the eve before her 32nd birthday while out to dinner, I asked her why.  It all started when I told her how pretty she looked.  After returning from patient day, she gave me a copy of Christine’s cookbook which was autographed along with many “goodies” she brought back.  I was amazed and my heart filled with joy that she could & would  lug all those gifts back from LA for me. Her mom. Then I asked her why she hadn’t been blogging.  I’ve always felt by helping others helps you feel better. Well, that’s all it took. Her beautiful brown eyes filled with tears and the flood gates opened.  She explained how she missed blogging, how she has just struggled with her health, her weight, juggling her marriage, motherhood, doctor’s appointment,  plasma exchanges, iron infusions, and of course chemo treatments.  Most of all the constant pain her body was in. I felt as if someone had taken a sharp stick, pierced my heart and was roasting it over a fire pit. Wait, wasn’t that how her feet felt today? And with it being -5 below that night she had to wear shoes and socks. As a parent, you can understand how I tried to put a band aid on it.  By saying things like” Don’t let this disease define you! You define this disease” “You have to get through this somehow someway” “We are all here to help you but you have to keep your mind positive”. Really, who am I kidding here? I don’t live in her skin. I don’t know for one minute how she copes, I don’t know for hour what it’s like to have this horrid disease at such a young age with her future uncertain. But as her mom, I have to try to keep her spirit going. For I believe that the human spirit can achieve and overcome anything. I believe that to the very core of my sole. I also say those things for me. That’s MY baby girl. I must be strong for her, when she can’t.  If I let her spirit give up then there is no hope. I just can’t let that happen. I won’t.

She has asked me if I have read Ali and Victoria’s book.  The answer is, I have tried several times.  Part of me wants to, just to get hope and answers. The other part of me says why do I need to read this? I’m living it.

But then she said, I just want someone to understand the patient side. So my commitment to her is that I will. I am.  As a mother of an NMO patient, I don’t have all the answers, the future is unkown. But this I know. I love her with my heart and soul.  I wish I could give her my body and take her burden on.  I love my darling Grandson, that she gave her all to have.  I remember when she told me that she was pregnant. Such joy, such hope.  Then flashes of “Steel Magnolias”. Oh God, what will happen to her. So I push those thoughts away, take a deep breath.

What I do know is she has great resources with the GJCF, amazing friends in Christine and Jenna. The love and support of her family and friends here.  Most of all, I hope your support –  fellow NMO blog readers, to send notes of encouragement to help battle this disease.  It is only through support of everyone, that our loved ones will not only survive but thrive.

I know we are all hoping for miracles, but today I’m hoping my daughter can just live one day, normal, pain free. Just today.

Terri- aka Erin’s mom

10
Dec 2013
POSTED BY Erin
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3 Comments

  1. It’s tough for the people who love us to feel so powerless in the face of our struggle. Yes, we are the ones who live with the day to day effects of NMO, but I do think when someone who is diagnosed with an incurable, life-threatening and life-altering disease everyone who loves that person suffers too. Maybe not in the same way, but they grieve too. I can say this because I live with NMO and last year my husband was diagnosed with stage 3 kidney cancer. I felt like the bottom had fallen out of my world and realized that’s probably how my loved ones felt when I was diagnosed.

    I saw this today and I think it beautifully explains how having empathy for what someone’s going through can be so powerful for the person who is struggling.

    http://www.youtube.com/watch?v=1Evwgu369Jw&feature=youtu.be

    None of us knows how to do this-we’re figuring it out as we go along. The most powerful way to help someone is simply to listen.

    Comment by Lelainia Lloyd on December 10, 2013 at 8:39 pm

  2. Carol Adams

    Terri- I am probably close to your age and think I understand your feelings. I have kids Erin’s age and cannot even fathom having a child with NMO.
    I guess for that I’m thankful that I’m the one, the patient with NMO.
    I can also understand the reluctance to read Victoria and Ally’s book, tho I found it very uplifting and full of hope as Victoria always seems to be.
    By writing this you are showing Erin the depth of your support and love for her.
    As many patients state often, their families are just not tuned in nor do they care to be or else just have a hard time showing it?
    Bless you for being there for her and your sweet Grandson.
    Well said Leilania Lloyd. Best wishes!

    Comment by Carol Adams on December 11, 2013 at 2:36 am

  3. Terri O'Brien

    Leilania & Carol,
    Thank you both for your responses. Great short video by Dr. Brenee Brown. I’m a big fan of hers. It’s good to know that empathy is what she needs not a band aid. lol It’s encouraging to hear that Ali and Victoria’s book is hopeful and uplifting, I will continue to read. You are both kind women dealing with so much. I appreciate you reaching out. I will keep you both in my hopes and prayers.

    Comment by Terri O'Brien on December 12, 2013 at 2:14 am

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