I’m Back!

July 6, 2011 at 3:03 pm 7 comments

Wow I kinda disappeared on you there, didn’t I? I often would come back here and think about posting, but my heart wasn’t in it. It’s time for me to get you caught up.

My mom passed away on June 11, 2011 at the age of 54 after a long, hard, brave battle with Mitochondrial Neurogastrointestinal Encephalophalopathy Disease (MNGIE) http://www.ncbi.nlm.nih.gov/books/NBK1179/ , a genetic disease that is very difficult to describe in summary … but it essentially attacks your muscles, particularly your gastrointestinal tract, causing the body to become unable to absorb nutrients. Other effects include hearing loss and paralysis of the eye muscles. It is an extremely rare genetic disease, and people with it typically show symptoms in their twenties to thirties. My mom was in her early forties when she lost her hearing, and although they were unable to diagnose the cause at the time, it is possible that it was as a result of MNGIE. She started to have gastrointestinal problems following this.

In October of 2009, she had an outbreak of shingles (the same virus as chicken pox). Following this, her gastrointestinal symptoms continued to worsen … she was prescribed medication for acid reflux, but would often vomit several times per day, causing her to be unable to eat for several days at a time. We tried everything – including liquid nutritional supplements – to get nutrition into her, but she was unable to absorb it. We saw so many doctors and specialists that it was unreal. They finally thought it was a gallbladder issue, so she had her gallbladder taken out in May of 2010. The symptoms did ease for a time, and she was even able to return to work, but they came back within a month. Her weight dropped dangerously low, to below eighty pounds. She tried to eat – she really did. She was not anorexic, but simply could not physically handle any food in her body. She got weaker and weaker, first using a cane, then a walker and finally a wheelchair to get around. She had to be helped out of the car, then off the couch, then even off of the toilet. We took her into the hospital in April of this year, and even then she knew she would not be coming home. At this point, not only was she not able to absorb nutrients, but she had lost her ability to swallow due to muscle deterioration. The Friday before Easter, they started her on anxiety medications, and she became very drowsy. I was assured by the nurse that this was normal. However, on Saturday morning (I was sleeping in the hospital every night at this point), I was unable to wake her up. They ended up calling a code blue, a moment I will never forget, and putting her on a breathing machine.

Over the next several weeks, she was tested for every disease possible at one hospital, then moved to another for an experimental treatment. At this hospital she was finally diagnosed with MNGIE, and we were told that her condition was irreversible. She became weaker and weaker until, on June 6th, she would no longer respond to us. We made the very difficult decision to cease life support on June 10th, seven years to the day after her father had passed away. She was a fighter, and hung on for more than twenty-three more hours, passing away at 12:44 pm on June 11, 2011 with her mom by her side, holding her hand.

The past few weeks have been very difficult for me. Unless you have lost a parent, you cannot possibly imagine the emptiness it leaves inside of you – the huge, gaping hole that now resides in your heart … it’s an emptiness that follows you, no matter where you are or what you are doing. My mom and I were incredibly close – the best of friends – my whole life. I miss her more than I can possibly express. It’s odd, the things you miss. My first day back at work was one of the more difficult I have had. For so long I had been rushing out at the end of a work day to see her, to help take care of her or to visit her in the hospital … and at the end of that first day back it hit me: I didn’t have anything I needed to rush home to. I’m lucky in a way, though … I have no regrets with her. I know how much she loved me, and she knew how much I loved her. Beyond that, what else is there?

My family and I have been overwhelmed by the outpouring of support from our friends, family and complete strangers. We are still coming to grips with our loss, and dealing with all of the things that come with it, but I know that my mom would be so grateful for the love and support we have been shown. We are very lucky people indeed.

On a happier note, I promise I’ll be back with recipes, stories of my silliness and some wonderful reviews for you. Until then, thanks for sticking with me.

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Entry filed under: General.

Pasta Belly Stand Still Workout

7 Comments Add your own

  • 1. Dani @ Body By Nature  |  July 6, 2011 at 5:03 pm

    I cannot imagine what you went/are going through and my thoughts are with you and your fam. Thank you for sharing such a personal and emotional post with us. Glad you’re back on the blog scene! xo

    Reply
    • 2. startwithanibble  |  July 8, 2011 at 3:50 pm

      Thanks hon! It’s good to be back on the blog scene. I’m still looking the IHN … I just may apply!

      Reply
  • 3. Nienke at Revel  |  July 6, 2011 at 10:00 pm

    Oh my word – I will pray for you! Hang in there girlie, and good luck 🙂

    Take care of yourself!

    Reply
  • 5. Lindsay  |  July 7, 2011 at 5:11 pm

    Amandaaaaaaaaa! I saw you over at ‘Oh She Glows’ today, so I thought I’d stop by.

    Miss you girlie!

    Reply
  • 7. Preena @ A Teaspoon of Turmeric  |  July 21, 2011 at 5:25 pm

    Hi Amanda,

    I’m sorry to hear about the loss and my thoughts and prayers are with you. Thank you for sharing through your post, it was very touching.

    Glad you’re back and looking forward to reading more. 🙂

    Take care,
    Preena

    Reply

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