Hi all. I don’t know how to start this really. My name is sara. Mother to beautiful twin daughters aged 26. I was 15 when I fell pregnant with them. I’m now 42.
My daughter Gemma passed away in the night on the 8th of January 2020. Her funeral took place on the 4th February.
My daughters both have a rare condition called wolfram syndrome (DIDMAOD) aged 12 when we found out.
Legally blind, seizures, bladder issues, diabetes, diabetes of the kidneys, brain stem atrophy and many other issues.
They say that the life expectancy is 32 years.
On the morning of the 8th I went to go wake my daughter up as she hadn’t come down for her breakfast, she is a early riser unlike her twin Rebecca who loves to lay in.
I found her I found my daughter in bed. She had had a seizure in her sleep and passed away.
How does a mother deal with finding her daughter!! And stay strong knowing it’s going to happen eventually to her sister?? How do I comfort Rebecca and tell her it’s ok when she knows it’s going to happen to her. Not if! But when!! Because it will. I have just lost one daughter and I have to watch her twin sister suffer the same fate and there is nothing any one can do to stop it because her brain stem is dying.
I can’t do this alone. I really can’t. I’m dying inside and I have to look and pretend it’s all gonna be ok.
I have known from aged 12 that this was going to happen. But I don’t think I ever really believed it would. But my biggest fear was always finding one of them in bed and it happened. my baby girl passed away and I was downstairs having a cup of tea!! A cup of tea thinking oh gemmas not up. Must have had a bad night and is sleeping in! She had been gone for about 6 hours and I was sat drinking a cup of tea!!
How do I do this. Please someone tell me because I don’t think I can survive losing them both!
Dear Sara
I’m so desperately sorry to read your post. I don’t know if I can offer any words of comfort but let me try. My younger son passed away 17 weeks ago…he died in his own home aged 30. An inquest will determine his cause of death. He had mental health issues plus unfortunately took recreational drugs which combined with his prescribed medication may well have contributed to his death.
I cannot imagine your shock finding your daughter had passed away. She was at least safe at home in an environment full of love. Don’t blame yourself for having a cup of tea! You are clearly a devoted mother, be kind to yourself.
The pain of losing my son is the same as the day the Police appeared at my door, but the pain is now not continuous and I have long spells each day when I cope well with life.
It’s still so early for you and you carry with you the knowledge you will lose your other daughter. She will bring you love and comfort and I’m sure you will want to make her years happy- a huge task when you are grieving. Those who have passed would never want us to be sad, they would want us to live our lives to the full, knowing we will all be reunited one day.
I cope by just getting through each hour of each day. I don’t dwell on never seeing Henry again - that brings on the gut wrenching pain. I talk to him as if he was as in the room with me and there are times I feel that he is.
I’m sending you love and hugs for you and your wonderful daughters. Keep posting on here, people will respond and you will find such support.
Love Purple
Sara-I can’t imagine the pain you are in . I think it’s a your strength of character and I commend you for reaching out in this blog this group of people who are strangers , but are not strangers to tragic loss and the searing grief that comes with loss of our children . You are brave and you communicate so searingly about your pain. I hope you have people supporting you and your family . I hope there are people in your life who can listen to you , validate what you are feeling and offer some care taking and comfort . You can’t go this alone . You
Need a community of “ carers” , people who can stand with you , help you shoulder this with you . I see a grief counselor and it helps me a lot . I cannot even adress the magnitude of your loss and the continuing care of Rebeccas twin who lives on with the reality of her death and more loss . I am overcome with deep feelings of compassion for you . I wish I could physically reach out to be present and comfort you . I can only use words that I type to you . Please please reach out to people around you . Find a support group a church community , friends , family , a counselor to help you navigate this painful journey you are experiencing . Keep writing . Keep sharing all you are feeling . It’s authentic and real. We in this community can validate you and hopefully offer an outlet for your feelings . My faith has been shaken in the loss of my daughters. But I do ask God sometimes “ Why are some people visited by tragedy and sadness more than others?” I have not yet received an answer yet . So I am sending you comfort through words . Take care of yourself . You are not alone .
I am so very sorry for your loss - nothing can prepare us for losing a child, no matter what. I cannot imagine how it must feel knowing you will lose your other daughter too. I lost my only child Caitlin in Septembershe was just 20. She was fit and healthy and died suddenly without warning in her sleep. I know my life is now such a pale imitation of what it was before.I miss her and long for her every minute of every day.
I cannot offer any comfort except to say that we were blessed to have had our beautiful daughters in our lives but losing them is beyond endurance and my heart breaks for you and your remaining daughter.
Sending you love and hugs xxx
I totally understand how you feel, my son had a very rare illness were he lost all of his 3 types of blood cells , after spending 5 months in Isolation at Addenbrokes hospital last year , Going though chemotherapy and fighting off infection after infection, he came out but went to hospital 3 times a week for blood and platelets, he was due a bone marrow transplant in early July , sadly on June 28 th I was at work joking and laughing I tried to ring him after work at 8 pm no answer, after rushing over I found him unconscious with a massive brain bleed , he died in my arms , I feel so guilty and heartbroken that I was at work laughing while he lay on his bed all day alone as they think he collapsed about 6.30 in the morning, that feeling of letting him down when he really needed me will never go away, we will never get over the loss of out children it’s just heartbreaking, bless you xxx
Thank you for all your kind words of encouragement and comfort. I just feel that only the mums and dads of this world would know of the pain of losing your children. It’s not meant to be this way. I get people saying to me all the time, “oh I know how you feel, when my grandad/aunt/uncle passed away” it’s not the same! I know because I have list loved ones but it’s the natural order of things. But your child! It’s not the same. So I’m finding it hard to not snap at them even though they mean well. I also get told well you knew it would happen eventually so just be thankful for the time you had. Again I get so angry inside like big ball (I’m usually so passive and laid back, never quick tempered!) and my favourite one is well at least she was at home in her own environment and bed!! If she was in a hospital she would still be here! She was fine! Doing well, in infections nothing. We were in control of her condition. Monitoring her at hospitals. She was fine. Apart from the seizures
I’m moving house on the 29th. I can’t stay here so that’s stressful. I had to go through all gemmas things. Was the worst part of all of this mess. Her favourite comfy slippers, her toothbrush, her earphones, favourite dresses. It hurts.
Dear sara1
People don’t mean to offend…there are no words to take the pain away and that’s what we all want, things to be as they were.
Professional support might be the answer for you if those around you are inadvertently saying the wrong thing? It’s a dreadful road for you especially walking it alone.
I’ve lost my son but I’m blessed to have had him for thirty years, every day I talk to him and somehow he lives on. Everyone has a different grief journey and I hope you find a way to manage life.
Love to you.
Hi Sarah1 ,
It’s just so awful for you and you have my sympathy- I know people don’t mean to offend but some people have no empathy at all. Minimising your loss is not helpful at all - your world has been destroyed- there is no silver lining! I understand people want to make us better and it’s only because they care- but you don’t get better or get over the loss of your child.
Moving home must be so hard- I cannot imagine being able to function to that level at the moment. Caitlin was on a university trip when she died and I haven’t even unpacked her rucksack yet- I just haven’t been able to face it. Her room is just as she left it the day she left on her trip and I go in there and lie on the bed in tears thinking of her and trying to keep her close in my heart. There cannot be a pain in the world to compare to loss of a child- it’s just unbearable,
Sending hugs,
xxx
Dear Sarah
Read your post and although I am dealing with my own grief of losing my Dad in April 18 and now my Mum has just weeks to live, I really cannot imagine how you must be feeling, so all I can do is send a virtual hug. So sorry for your loss.
Thank you. This group really is helping. I have had a few calmer days these past few days. I feel less angry. It was awful to feel like that because I’m a well put together person. Anger is such a wasteful emotion but I know it’s all a part of the grieving process. Well I guess anyway. We can all sit and ask “why me?” “ why my daughters!” But I unfortunately know why. Wolfram syndrome is so complex and destructive and so rare that very few people know about it. In time I will grant gemmas wishes and do a fund raiser for wolfram syndrome in her honer. At her funeral we managed £980! Just from my family and friends she would be so so happy with that. Both girls wanted to donate their stem cells to the research but unfortunately Gemmas wasn’t viable to use because she had been gone to long. But Rebecca goes in March to have 3 biopsy sized skin taken to be used in the research and both girls have granted permission to use their medical files also as they are the only set of twins that have it. I’m so proud of them both and all they ever wanted to do is make a difference for future generations that are born with the wolfram gene. In Britain there only just under 200 cases and both mother and father need to be a carrier of the defective gene to create a wolfram syndrome child.
My goal is to bring awareness and for rebecca to see how many people care and want to help to achieve both her and gemmas goals. Rebecca wants to go on a family holiday abroad. And to take a little bit of gemmas ashes with us so she can sprinkle her in the sea and be with us as a family. Gemma wanted to go on holiday together so much I could never afford to take them. I feel so guilty for not making it happen. So sorry I’m rambling. Thanks again everyone. This really does help. My heart goes out to you all as you go through your own grief
she would be so so happy with that. Both girls wanted to donate their stem cells to the research but unfortunately Gemmas wasn’t viable to use because she had been gone to long. But Rebecca goes in March to have 3 biopsy sized skin taken to be used in the research and both girls have granted permission to use their medical files also as they are the only set of twins that have it. I’m so proud of them both and all they ever wanted to do is make a difference for future generations that are born with the wolfram gene. In Britain there only just under 200 cases and both mother and father need to be a carrier of the defective gene to create a wolfram syndrome child.
I could never afford to take them. I feel so guilty for not making it happen. So sorry I’m rambling. Thanks again everyone. This really does help. My heart goes out to you all as you go through your own grief