Breakfast in bed. Flowers and a card: “Happy Mother’s Day Mummy.”
For most families, it’s a day of celebration. But for mums grieving the loss of their child, or those hoping and wishing their seriously ill child will survive one more Mother’s Day, it can be a cruel reminder of all they have lost, or all that is left to lose.
More mums than ever are facing up to Mother’s Day knowing they will lose their beloved child, as the number of children and young people with life-limiting illnesses in England has nearly trebled in the last 20 years[1].
In the lead up to Mother’s Day, Together for Short Lives will be supporting families facing the unimaginable: Life without their child. Through our helpline, live chat and family support services, families struggling to cope with Mother’s Day will have access to emotional support through trained experts who are highly experienced in dealing with the sensitive issues these families face.
Caring for a seriously ill child is an emotionally and physically demanding experience. About 75% of families caring for a medically complex child experience anxiety, depression or breakdown due to isolation, and mothers of a life-limited child are 50% more likely to die prematurely themselves[2]. These feelings of isolation and anguish are exacerbated and compounded on days such as Mother’s Day.
“Like all days of celebration, Mother’s Day can be particularly difficult if you are facing the day without your child, or caring all day and all night for your medically complex child. We want to reassure these Mothers that they aren’t alone and that we are on the other end of the phone or email in the lead up to the day, if they are finding it challenging this year.” Helena Dunbar, Director of Service Development and Improvement at Together for Short Lives.
For these mums, they can often feel as though they are caring in the shadows. This year, Together for Short Lives wanted to shine a light on three very special mums:
The recently bereaved Mum
Laura is mum to Jessica who had cerebral palsy and epilepsy. She died on 23 December 2019 at eleven-years-old.
“Mother’s Day meant everything to us when Jessica was alive, as it was another year with her. We always knew she wouldn’t live a long life so we always treasured occasions like Mother’s Day.
“In December 2019 Jessica caught flu and was put on a ventilator in intensive care. I knew she had no fight left and so we made the decision to transfer her to St Oswald’s Hospice Children and Young Adults Service for palliative care. Jessica passed away on 23 December 2019 cuddled in on my knee with her dad and a lovely nurse by our side.
“I have had two Mother’s Days without my daughter now. The first one was during the first lockdown and it was just awful, I felt very lonely. I was alone the whole day as my husband was a key worker. It was so difficult. On the second Mother’s Day, I was pregnant with my son Jayden, and so I felt more hopeful.
“On Mother’s Day and every other day we talk about Jessica openly. She’s still part of our lives, she always will be. On occasions such as Mother’s Day, we will spend time together, enjoy lunch and visit Jessica’s grave.”
The Mum caring for her seriously ill child
Tilly’s family were given her diagnosis of Rett Syndrome in March 2018 when Tilly was just 18 months old.
“Mother’s Day is a time to spend with the girls as a family. To celebrate as a family. It’s a time to just reflect on how lucky we are to have each other. We make sure we spend the day together as a family, but we do need to be more organised about our planning as if we want to go out, we need to think about Tilly’s needs.
“We keep things simple and take joy in simple things like going for a coffee and going to the park. We take joy in going to country gardens and for walks – Tilly loves the wind on her face and her sister loves running around and going to the park on the swings. That’s how we will spend the day this year.
“I try not to take anything for granted. Every day, not just on Mother’s Day, we enjoy our daughters. We don’t wait for this day to celebrate our girls. We celebrate them every day. Every day takes on a new meaning when your child is diagnosed with an illness like Rett. Every day is a blessing.”
The bereaved many years ago Mum
Jane is Mum to Laura and Lynn who died 23 and 21 years ago. Laura was 4 and Lynn was 15. Laura was born with a hole in her heart, and Lynn died of leukaemia.
“Mother’s Day was always a fun and special day. Laura was always too young to really know what it was, but Lynn always got me a card from a young age, through her Daddy, until she could do it herself. She would write such sweet words of love and do a little drawing.
“But now, Mother’s Day is always an extra sad day, as it really brings my heart-breaking loss to the fore, and I long to see them again and have them here in my life, where they should be. They would be spoiling me, no doubt, with cards and gifts and we would probably all get together for a nice meal, sharing special time with each other.
“The first Mother’s Day was the hardest one. I feel the first of everything after one loses their child or children is the most difficult, as the loss is so recent and the pain so raw.
“I will always find it difficult, as I don’t have other children and so forevermore, will never have that special joy of receiving the cards, gifts and precious time, as a family together. It’s also hard to see friends with their children/grandchildren, which we will sadly never have either. Days like Mother’s Day and Father’s Day are especially hard for us.
“I find comfort in visiting my girls in the beautiful cemetery in which they are buried together. Although they died 18 months apart, Lynn chose where she wanted to be laid to rest and one of her last wishes was to have Laura exhumed from my parent’s grave and laid in with her. The Churchyard is small and intimate, and the sun almost always shines through. I put some lovely flowers and a bright candle on and that brings a certain peace, and I think of my girls smiling happily and have an even greater sense of them close by in spirit.”
[1] https://www.togetherforshortlives.org.uk/resource/make-every-child-count/
[2] https://adc.bmj.com/content/106/10/987#T2
