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Re: [Mito] sad

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  • Erin McKenzie-Christensen
    I am relatively new to the world of mito. But i am an adult who wants kids so to speak. waiting is really hard the symptoms are really challenging just getting
    Message 1 of 13 , Oct 23, 2011
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      I am relatively new to the world of mito. But i am an adult who wants kids so to speak.
      waiting is really hard the symptoms are really challenging just getting out of bed each day is challenging LOL but i am sure you know what i mean.
      My mum passed away in 01 i was adopted so i dont have what she died of so to speak however i do miss her i know its the opposite but i cared for her when she was ill was only a teenager! it was SO hard years later after doing university degree in music studies i actually became a support worker for people with disabilities and now i need this help myself so i find all this very very ironic, then when you look at all the ups and downs all the &^%$ drs who stuff you around or dont have  a clue who you hope might help you get lost in a world no one else understands except people like you guys on this list.
      so i hope everything thats going on can sort out im lucky in some respects cause i did not have these issues growing up although thats not totally true i guess i did not have anywhere near the issues i do now (im 30) and nothing like what the kids have on these lists.
       
      so hugs
      from erin
      ----- Original Message -----
      Sent: Monday, October 24, 2011 6:16 AM
      Subject: Re: [Mito] sad

       

      Amanda,
      I hope you don't mind me sharing in your tears.
      Lee I have walked this road also for a very long time with three daughters with mito. Have had my ups and downs. Shared in the tears of fear and the wet smiles of overjoy and happiness. What you wrote is amazingly sensitive and caring. Something I think often gets lost in our world of meds, docs, treatments, etc. Thank you for the beautiful reminder.
      And Amanda I'm so sorry you guys are walking this lonely scary road right now. I have been on it also with my oldest daughter. She was doing so good and last October that all changed. I can't offer a solution but a kind ear that completely understands how you feel I can offer.
      Please email me at
      Y own email to chat. Or while there I will pass on my cell number to call of text.
      Legeyt213@...
      I don't normally reach out and I apologize. I guess I like to many others get caught up in my own world and forget their are others that could use a kind word or friendly hand.
      We have lived in the mito world for most ten years and like every other place I think we pass by and forget to introduce.
      I also send you a cyber hug and look forward to hearing from you if you would like.
      Joann



      From: amandaandjackson@... <amandaandjackson@...>;
      To: <Mito@yahoogroups.com>;
      Subject: Re: [Mito] sad
      Sent: Sun, Oct 23, 2011 5:34:40 PM

       

      Lee,
       
      You brought tears to my eyes, oh what it would mean to have a " MOM" around that had been down this Mito road, I like to try to live our lives and mito is just apart of us,it does not define us, so when things seem to implode I feel like mito is trying to take over and it makes me so anxious. Hope is my new favorite word.......
       
      Many thanks and hugs,
      Amanda 


      -----Original Message-----
      From: Lee Collins <leecol211@...>
      To: Mito <Mito@yahoogroups.com>
      Sent: Sun, Oct 23, 2011 1:24 pm
      Subject: Re: [Mito] sad



      Amanda,

      Thank goodness for hope!  It does not negate the pain, but it makes it bearable. 

      I've experienced my own complicated journey through motherhood and I'm a grandmother now.

      Believe it or not that's complicated too and once a mother always a mother, but I feel like I've completed a portion of this circle of my life. 

      I wish there was more that I could do.  I'd like to visit every mito family (like a mito granny) and cook them supper or give them a hug when they feel overwhelmed.  

      I'd love to play with the kids for a while so mom could have a nice warm bath or go out to a movie.

      For us, mito is a reality we must live with and can not change.   We can modify it maybe, but we can't change it yet.  

      It takes a lot of faith, courage, strength and hope to accept that and decide to live your life anyway.

      Everyone lives with circumstances beyond their control.   They just don't know it yet.

      For us it's already evident.   Life for anyone can change in a heartbeat.   Most people live in denial of this fact.  

      For us some of those life changing heartbeats have already occurred.   We know.  We know that no one is immune.  We know that more life changing heartbeats await us.  

      It's difficult to have to learn this while you are young.  And by young I mean mommy age as well as childhood.  

      This is a lesson we know is coming, but we'd like to live well into old age before it have to learn it.

      I like to believe we have an opportunity to live life and experience love a little more fully because we know.

      Life changing moments can change things for the better too.   It happens!

      Children get sick, but they get well too.  We have to remember that sometimes they get well. 

      What is around the next corner?  We can't know.  We can fear it or we can hope for something good.

      One of the mito moms used to quote Ram Dass.  

      "Life can not be measured by the number of breaths you take, but by the moments that take your breath away."   

      Big Cyber Hug!

      Lee

        





         



       


      From: "amandaandjackson@..." <amandaandjackson@...>
      To: Mito@yahoogroups.com
      Sent: Sunday, October 23, 2011 11:02 AM
      Subject: Re: [Mito] sad

       
      Lee,
       
      Thank you from the bottom of my heart. Hope is the best gift anyone could give me right now.
       
      Amanda mom to Jackson complex I


      -----Original Message-----
      From: Lee Collins <leecol211@...>
      To: Mito <Mito@yahoogroups.com>
      Sent: Sun, Oct 23, 2011 6:30 am
      Subject: Re: [Mito] sad



      Amanda,
      The neuro stuff is terrifying.  I'm sorry Jackson isn't doing well right now.  It's heartbreaking to watch your child's health deteriorate.
      For my daughter it was most severe during adolescence. 
      We spent a lot of time hospitalized in Boston on a neuro unit. She still has some health problems, especially neurological and immune system, but they are minor in comparison. 
      At age 26 she's doing extremely well in college.  The improvement in her condition is awesome. 
      This might sound like false hope right now, but it is the truth.   
      I hope someday you'll be writing words of encouragement about Jackson for other parents and kids too. 
      Hang in there.
      Lee


      From: "amandaandjackson@..." <amandaandjackson@...>
      To: mito@yahoogroups.com
      Sent: Saturday, October 22, 2011 9:17 PM
      Subject: [Mito] sad

       
       
      I am struggling so much right now. Jackson has been very stable for over a year but this summer things have started to change, he is having lots of new symptoms and worsening of old ones, most scary are the cognitive stuff, loss of memory, speech problems ( having trouble recalling words and getting them out), new neuropsych stuff, his "good" days are much farther apart, we have lots of Dr apps coming up and I am so nervous to hear what they are going to say..is it ridiculous to want to hold onto the thoughts that if they don't say out loud what the problems are then maybe they don't exsist in the first place?? I know ,denial right? I am scared for my baby and I am scared for me...I know it could be much worse...he could be much worse...and I also know that in time I will come to terms with this new " normal" but for now it is scary and feels very uncertain......
       
      thanks for listening,
      Amanda mom to Jackson 12 yrs. complex I








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