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Families whose child with SMA has died, talk about their personal experience of grief and how they cope with bereavement:

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“My husband and I dealt with things differently, but allowed each other to grieve in our own way, we cried together and talked lots, but respected how each other dealt with it.” (Mum)

“I am not the same person I was before. At my worst there are lots that I still struggle with and I do feel a bit like I am drowning.” (Dad)

“After the funeral I went to the grave every day for a few weeks. I had to, I needed to. But gradually that moved to every other day until it was once a week. Almost 11 years on and I still go round once a week, just for a few minutes. Tell her I love her and miss her.” (Mum)

“I still have bad days, they are just few and far between now. It still hurts, the pain just loses some of its rawness over time. One day you do smile again and I felt guilty the first time I laughed, but you have to keep living. For a long time I just existed, but slowly you do start living again.” (Mum)

“Believe me I cried, you don’t have to be the macho man who doesn’t cry. That just makes you hurt inside. You have to be able to let your feelings show because if you don’t then you will hurt for longer.” (Dad)

“Writing down my thoughts and feelings helped a lot initially. I’ve been able to do this by writing poems. I’ve got a notebook, with a photo of our little boy on the front, and use it for all my thoughts and feelings.” (Mum)

“I wrote a letter to my son. Didn’t do anything with it, just wrote it and read it out loud.” (Mum)

“I took part in music therapy. I compiled a CD of the songs I used to sing with my son and rhymes I’d made up for him as well as songs/music that reminded me of him. I found this very therapeutic. This allowed me to express my sadness, but also smile as I thought of him. I did this with the children’s hospice we attended, with a professional music therapist.” (Mum)

“The thing which helps me most in coping with the loss of my granddaughter is talking about her and having a photograph that I can kiss and say goodnight to.” (Grandparent)

“Talk lots, respect each other in grieving and take one day at a time, small steps is all you can do. Slowly and naturally life does restart although it doesn’t feel like it ever will.” (Mum)


“Talking is a huge thing. I wanted to talk about her, it was important to me. I wanted people to be able to talk to me and not shy away. I will still talk about her and get SMA into the conversation if I can.” (Mum)

“I find some things people (even close family) say and do very insensitive and sometimes difficult to swallow. Occasionally I have lashed out a bit at someone.” (Dad)

“Our G.P. came to our house the day after our daughter died to see how we were. He saw us regularly for a few weeks to check how we were coping. As a couple we supported each other and got each other through the days.” (Mum)

“I spoke to another bereaved dad and he helped me when I was really low at one point.” (Dad)

“I was on a forum and they were very supportive. They sent flowers and cards and even raised money and awareness.” (Mum)

“I was lucky as I worked with someone who had lost a child too so I was able to talk to him.” (Dad)

"Talking to the right people about the good and bad times has helped me. Just because our children are not here anymore doesn’t mean we don’t want to talk about them. I found some friends better than others at listening and understanding and it’s often the ones you least expect. It’s often been hard to talk to those closest i.e. your partner but I’ve learnt it is crucial and takes time to get right.” (Mum)

“They say time heals everything, well that’s rubbish. You never get over the loss, you just become dull to the pain of the loss. I think the most important thing is to be able to talk, it’s not just you that has had a loss – it’s your partner, your parents, other family members. Be strong for each other, talk to each other, share a tear and remember no one will think any the less of you if you cry, after all you are only human – not a robot.” (Dad)

“The times I wanted to talk was normally the middle of the night rather than a scheduled appointment. I found writing down my thoughts and feelings when they entered my head, no matter what time of day or night helpful.” (Mum)

“It helped having a piece of woodland dedicated to our boy and going to visit it.” (Mum)

“Fundraising gave us a positive focus after our son died. This was really important to us as something positive had to come out of our gorgeous boy’s short life.” (Mum)

“Our daughter loved lights, she would stare at them content for ages. We had special lights set up in our house, some of which we still have up now. If I want to feel close to my daughter I switch on the lights. Using her lights is always a positive experience and helps me.” (Dad)

“We contacted a rose company and had a rose named after our daughter. We also put her name in the hospice and hospital remembrance books.” (Mum)

"Fundraising helps to keep our son’s memory alive as well as spreading awareness. We like taking part in SMA awareness week.” (Mum)

“We started a fund in her name.” (Mum)

“When you are missing someone do the things they enjoyed doing and that way you can enjoy remembering them.” (Dad)

“We call the place where our son is resting ‘his garden’ as we don’t like the terms grave or cemetery. We go regularly and plant colourful flowers, and decorate it with windmills, different garden characters and stakes with butterflies. There are also some solar lights so it’s always lit. We are always on the lookout for new things especially if we are out for the day. It’s a way of still being able to tend to him and include him in our lives.” (Mum)

“We promised our daughter that when she died we would help other children like her. By fundraising we feel like we are giving to her community, her friends and those that are like her. It also helps us to build her legacy and ensure that she stood for something in the time she was with us.” (Dad)

“Anniversaries are particularly hard. Our son passed away at our local children’s hospice so we go there to their quiet room and light a candle then try and do something in the fresh air and go somewhere. A walk along the seafront and lunch is a favourite. We have also thrown flowers out into the sea.” (Mum)

“I have learnt not to predict how I’m going to feel. The build up to a milestone, anniversary or birthday is often worse than the day itself.” (Mum)

“We have decided to call our son’s anniversary a memory day and as we move forward with our lives with the blessing of other children, (it was our first born we lost to SMA), we will still always do something to mark the day he died. We can then help to keep his memory alive for his siblings.” (Mum)

“I like to place fresh flowers on my granddaughter’s grave whenever I visit my daughter and I light a candle and offer prayers on anniversaries.” (Grandparent)

“Around the anniversary of his death we always try to do an event, for example a 10k run.” (Mum)

“On his birthday we try to make one positive, life changing decision.” (Mum)

“On our daughter’s birthday we went to the London Observatory and saw the night sky show – it was a positive way to enjoy her birthday.” (Dad)

“For her birthday we get a little floral posey made up for the grave.” (Mum)

“Balloon releases, lighting candles, going to a place that is special or doing something we would have done, helps to mark birthdays. For example we took a ride on a steam train on what would have been our little one’s second birthday and visited a small farm on his third. As time goes on, different things seem appropriate.” (Mum)

“The first Christmas we sent out laminated handprints of our son’s hand and asked people to do a little something in the year ahead to make a difference to someone’s life.” (Mum)

“At Christmas we always get a special floral arrangement made for the grave, for example a penguin, Christmas stocking, cracker, Christmas tree.” (Mum)

“The first Christmas we worked in a kitchen preparing Christmas dinner for about 100 elderly people and dining with them.” (Mum)

“Do what you feel is right with regards to returning to work. I went back when I felt ready to.” (Mum)

“I sent out information beforehand so that I wasn’t put on the spot explaining what had happened, and also telling them how they could support me. For example, ‘do ask me about my son’, ‘don’t avoid me’ etc.” (Mum)

“I allowed myself time, didn’t rush back to work. I tried not to expect too much of myself as normal day to day tasks and life are struggle enough.” (Mum)

“I’d taken voluntary redundancy before we knew our son was even poorly and at first not having the pressure of going back to work allowed me time to try and process things as the emotions are exhausting. However, the lack of purpose, isolation, not belonging, was very hard and I could feel myself going downhill. I applied for various jobs, had interviews but the gap in service made it really hard to answer questions about it. I hadn’t been in the real world for such a long time, locked in my own bubble, things had been going on around me, meant I had just been functioning, now to be asked questions, tests etc. I realised I wasn’t ready. So, I started volunteering, best thing I ever did. It built my confidence without the pressure or expectation that comes with working. I was helping others which made me feel good and it even led to paid employment.” (Mum)

“Do what you feel is right for you.” (Mum)

“When it came to sorting out her clothes it was four weeks before I could do it. I did it alone because I needed to. They were all vacuum packed into bags and stored away. I wasn’t ready to let them go.” (Mum)

“I have a couple of standard lines ready for when people ask me if I have children – sometimes this means giving myself permission to say ‘no’ if I don’t want to talk about it at that particular time.” (Mum)

“Give yourself lots of treats. Your body and mind have been to the most difficult places.” (Mum)

“I find I am in a better mood after exercising. I talk to my daughter when running, biking or swimming and I feel she is closer to me.” (Dad)

“Respect how each other feel. What you may feel you need to do, your partner may not, but allow each other the space to deal with it. Don’t push each other away.” (Mum)

“It is hard hearing of other pregnancies and seeing other children’s friends growing up knowing our little boy won’t have that opportunity so I’ve learnt not to feel guilty by saying no to seeing friends and their children if it’s felt too hard. Some days (and times of the year) are better than others and I’ve found this changes over time.” (Mum)

“Talking to the right people, at the right time and doing things at my pace, not rushing or placing too much expectation on myself is probably what I’ve learnt the most. Emotions, thoughts and feelings about what’s happened still take me by surprise. As parents who have lost a child, it’s the most horrendous experience that we have to learn to live with but will never get over. Eventually, with time, the scales will start to tip, just slightly and there will be more smiles remembering the love and beauty of our children rather than tears at the pain of their loss.” (Mum)


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Book Recommendation

Joe, a bereaved father whose daughter had SMA Type 1, has recommended this book and says:

"A fathers tale of his daughters battle with SMA type 1. Excellently written, told with brutal honesty, humour and beautifully written. It had me laughing and crying at the same time. The book has really helped me to deal with some of my grief. I can not recommend this book highly enough. I am not someone who is an avid reader and I sped through this in a matter of days reading it into the early hours of the morning, I just couldn’t put it down."

You can find it on Amazon by clicking here.

Page last updated: June 2022

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