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Saying goodbye to my Mum

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    Saying goodbye to my Mum

    Hello,

    My mum is called Sarah, she was diagnosed with MND in 2012 while I was 16.

    At the start I was completely terrified of losing my mum, she was the kindest person in the world and the care and compassion she possessed knew no bounds.

    I was scared that her body would betray her and she would be locked in a prison of frustration and sadness.

    I was upset that she would not be there to see me leave school, be at my wedding or hold her grandchildren.

    But my Mum wouldn’t let such a horrific disease get the best of her. She fought every step of the way and 9 years down the line she had seen all 3 of her children leave school and go on to university, 2 of them graduate, and she got to meet the love of my life who I will one day marry.

    A week ago today we lost her. She wasn’t ready to go but she got unlucky. And she’s left a hole in our lives.

    I struggle to remember mum before the MND, people tell me the memories are in there but they haven’t surfaced for me yet.

    Even so when I reflect on the woman she was I’m filled with such pride. She was always in control. She couldn’t move her arms or legs for the last few years but she was still in control. She could ask to be left in bed all day and sleep through the pain and frustration if she wanted to, but every day she was able she sat at the kitchen table, or on the sofa or in the garden - and she lived.

    She ran the house, she bossed us all around, she did the food shop, found recipes, gave advice, made jokes, played music, read, laughed, cuddled, cried.

    Everyday she chose to love and compelled those around her to love as well. The world is a darker place without her.

    I’m so proud of my Mum.

    #2
    RIP having lost my mum I feel your pain.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      9 Years you didn't think you would have ..............eventually things will start to come back to your mind and your memories will surface, sorry you lost Sarah,
      kindest wishes

      Sue
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Originally posted by Son of SLP View Post
        Hello,

        My mum is called Sarah, she was diagnosed with MND in 2012 while I was 16.

        At the start I was completely terrified of losing my mum, she was the kindest person in the world and the care and compassion she possessed knew no bounds.

        I was scared that her body would betray her and she would be locked in a prison of frustration and sadness.

        I was upset that she would not be there to see me leave school, be at my wedding or hold her grandchildren.

        But my Mum wouldn’t let such a horrific disease get the best of her. She fought every step of the way and 9 years down the line she had seen all 3 of her children leave school and go on to university, 2 of them graduate, and she got to meet the love of my life who I will one day marry.

        A week ago today we lost her. She wasn’t ready to go but she got unlucky. And she’s left a hole in our lives.

        I struggle to remember mum before the MND, people tell me the memories are in there but they haven’t surfaced for me yet.

        Even so when I reflect on the woman she was I’m filled with such pride. She was always in control. She couldn’t move her arms or legs for the last few years but she was still in control. She could ask to be left in bed all day and sleep through the pain and frustration if she wanted to, but every day she was able she sat at the kitchen table, or on the sofa or in the garden - and she lived.

        She ran the house, she bossed us all around, she did the food shop, found recipes, gave advice, made jokes, played music, read, laughed, cuddled, cried.

        Everyday she chose to love and compelled those around her to love as well. The world is a darker place without her.

        I’m so proud of my Mum.
        I’m sorry about you wonderful mum passing. Such lovely words written about her. I’ll be thinking about you. Take care, Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          Hi Son of SLP
          Thankyou for sharing your feelings .May your mom now rest in peace.
          Ironically this morning I have been recording a video of me to leave to my eldest granddaughter when I pass away.

          You have learnt a lot from your mom as she showed you how she continued to be the centre of your family .She sounded like she was surrounded with love as well as giving you all her love and wisdom too.
          Best wishes
          Mary

          Comment


            #6
            She sounds like a wonderful lady and and a mum to be proud of.
            Thinking of you and your family. X

            Comment


              #7
              I was really touched by your post. Your mum was clearly a wonderful, and strong person, and you were, and still are, a supportive and sensitive son. Be proud.........the memories pre - MND will creep back. Your mum will always be with you. Like your mum, I try to carry on living each day, although I know my time is limited. I’m trying to make memories so although I can no longer talk or swallow, I have my grandsons with me today ( aged 11) and we are enjoying each other’s company. Your mum knew, as I do, that we should try to continue living the best life we can.
              All the best. Treasure the memories.
              love, Lizzie x

              Comment


                #8
                Hi

                what lovely words. She must have been a wonderful, strong person who wanted to be there for her family. Surrounded by love.

                the memories will come. Don't worry I'm sure she's not far away.

                love and hugs Denise xxx
                when i can think of something profound i will update this.

                Comment


                  #9
                  Son of SLP Thank you for taking the time to pass on this news - your words are very touching.

                  I am so sad to hear that your beloved mum has died, my heartfelt condolences to your family.

                  I got to know Sarah over the years, know what a special lady she was, how much she adored you all, and that she'll be deeply missed by you all - by her beloved animals too.

                  I shall miss her too.

                  Look after each other.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    I am so sorry to hear about the loss of your beloved mum, son of SLP,

                    It sounds like she was a wonderful lady and a fantastic mum. Your words are so moving. You write that you are proud of her and I am sure she felt the same way about you.

                    I hope that in time your happier memories will bring you comfort. She wil always be with you.
                    Love Debbie x

                    Comment


                      #11
                      A lovely letter to your mum xx

                      Comment


                        #12
                        What a wonderful mum and proud son. My love to you and all your family
                        Richard

                        Comment


                          #13
                          Son of SLP What a wonderful tribute to write about your mum.

                          My mum died of MND in 1979, I was 25, older than you, but had had bad feelings for my mum since i was 8. In her last year, she finally came off the drugs she had been taking to keep her sane (they didn't always work).

                          In her last year, i started to get to know my mum, but because of my antipathy, I couldn't show her any love. I did all the practical things, i was the only person who could understand her speech, i fed her, moved her in bed, got up in the night to turn her. I never told her i loved her.

                          Fortunately, through courses I went on, i got in touch with her spirit (soul) and know i was forgiven. I wish i could say wonderful things about her, like you have done.

                          Remember all she did and said, she will will be with you for a long time, until you are ready to move on. Your memories are precious, guard them carefully. May your life be full of the things that she gave you, i feel for you.
                          Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

                          Comment


                            #14
                            Son of SLP

                            I don't have words to really express how moving your post is, but, it really touched me, and made me feel that your Mum was an incredible person who loves you all. Although it is so sad to read she has passed, it is also inspiring me how she still lived, with MND. Thank you for taking to time to post, love and best wishes to all of you. xxx
                            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                            Comment


                              #15
                              so sorry for your loss, your Mum was an amazing lady. Treasure your memories, It will 2 years on the 3/7 for me, we got just 11 and a half months after diagnosis. Your Mum will always be with you. I wish you strength in the coming weeks and months xxx

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