October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we share Summer’s story, written by mum, Leanne.
Summer was an unexpected, late, but very wanted addition to the family. As I was an older mother with a history of Down syndrome in the family I was offered an amniocentesis which I refused because I knew I wanted to keep this baby no matter what.
When she was born early by caesarean section she was beautiful. The consultant came to my room when she was a few days old to tell us she had Down syndrome, which we suspected anyway. He was dumbfounded by the family’s reaction. We said “That’s okay. She’s beautiful. When can she come home?” That shaped our attitude towards her. She was simply Summer, a beautiful baby.
Despite having holes in her heart, she smiled from day one, hit all her milestones in the first year, and really loved music. As she grew, her development began to lag behind other kids, but it wasn’t a race. She took the scenic route and it was a beautiful journey. Every day brought smiles and laughter, and dancing. When she was four she was still non verbal, but she understood everything and she had no trouble communicating with us.
One day I noticed that she had spent an entire day sitting on the sofa, which was unlike her. On day two of her not walking I took her to hospital. Nothing prepared us for the news that she had leukaemia. Our world shattered into a million pieces.
She spent a long time in hospital, and we could see her literally beginning to slip away. One day her nanny saw the hospital musical therapist in the corridor and she brought her in to see Summer. As soon as she began a haunting rendition of Over the Rainbow, Summer sat up for the first time, enraptured by the music. When it was over she sat up and applauded. From that day onwards, she began to heal, physically, emotionally and mentally.
Fast forward to the present day. After two years of treatment she rang the bell, won The Liverpool Echo Child of Courage Award and is now back to her usual cheerful self, although she is still prone to infections and walks stiffly due to all her treatment. She loves playing on her tablet, which she navigates like a pro, enjoys trips out in her wheelchair and loves visits from her nephews and cousin.
We don’t see her as a child with a disability. She is an individual, a six year old who might not talk a great deal, but who communicates without words. She has a natural affinity with dogs who seem to sense that they must be gentle with her, and a huge affinity with people. Everyone in my local neighbourhood knows and loves her and people from all over the world follow her journey. I am truly blessed to have her and I can honestly say that she is no trouble, she isn’t a burden at all. On the contrary she has enriched all our lives.
Summer has become something of an ambassador for awareness of both Down syndrome and Childhood Cancer. She, alongside three of her older siblings, Chelsea 22, Levi 18 and Jojo 15, two dogs and two cats in noisy and happy harmony, attends a local special needs school, which she loves. She also has a large extended family, four grandparents, aunts and uncles, cousins and she herself has two nephews . Their daddy, my son, has left home. Because she’s always surrounded by people she’s not shy and there is always someone to cuddle her. She loves being the centre of attention and will often stage an impromptu little “concert” for her siblings in which she will dance to one of her YouTube songs and do all the actions. She loves doing this, and her laughter is contagious.
Her daddy often takes her out in the car, which she loves. She is for the most part, non verbal, but she has the ability to speak, and will often say a complete sentence, never to repeat it again. However, she will sing a song, in tune, and say the lyrics perfectly. She has a great understanding of speech, but is hesitant in using it. Physically she has some muscle wastage in her legs due to the chemotherapy and can’t walk very far, so she uses a wheelchair. Her immune system is still quite weak so we have to guard against infection and discourage visitors if they have a virus. When she’s poorly she just wants to be cuddled and sleep. She has lots of toys, yet she prefers her large collection of blankets and her tablet. She would watch Peppa Pig all day if she could. Because her siblings are in their teens and twenties, Summer has developed a taste for chart music, and once again, she’s lyric perfect. In so many ways, music has been her educator, her comfort, and literally her life saver when she was so ill in hospital.
She has some sensory issues, which mean that she will sometimes have an a aversion to certain tastes, sounds, textures and smells. She also likes her environment to feel predictable, safe and secure, with a regular routine. Her learning is very gradual and I’ve found that she’s mainly a visual learner, learning from visual cues and repetition.
We don’t really think of her in terms of having disabilities or challenges. She’s simply Summer. We’ve adapted to her ways of doing things and as a result my family is so much more relaxed and laid back than we were before she came along. I wouldn’t change her for the world.