Sol’s story (6 yrs)
Poem (Power of 3)
Written by Laurette (Mum)
Sol came into this world on a late night in June. Born in water and gift wrapped in his amniotic sac (if I’d known how rare and lucky its considered, I would have kept it, when the midwife asked) Sol broke out of his sac using his swim reflexes trying to swim up. A mass of curly black hair and a button like angelic face, hence why his dad nicknamed him Buttons. A perfect night!
Early the next morning the midwife came to say goodbye following her night shift. Another midwife came in late morning. I don’t recall her introducing herself, she was bubbly with a beaming smile, not someone about to deliver, what I thought to be bad news at the time. She walked up to Sols crib all merrily, looked in and said “we suspect he has Down syndrome, the consultant will be up to see you soon” a pause, she looked at Sol “couldn’t you tell” then left never to be seen again. It felt like she was chosen for the task, even though she was smiling it felt cold, my midwife should have told me.
Alone with my thoughts of shock, dread, and denial, plus I had to tell Sols overjoyed dad. I’d only met a person with Down syndrome once, a charismatic student, while on a course. I held on to this positive memory tightly in the next coming days. There were tears shed, washing my eyes so I could see. The feeling of pure love deepened, with the sense of needing to protect him from the outside world.
Down syndrome was suspected from birth due to single Palmar crease and ‘saddle’ gap between toes. Diagnoses confirmed later by bloods. We were introduced to the Down syndrome specialist nurse and later the Down Syndrome Oxford community, they were a godsend and supported us in the next few days and years.
Sol, a Gemini, can be charming or he can pull your hair, don’t worry this means he likes you. Headstrong or easy-going, he finds life amusing especially the wrong things. He loves books, food, and the great outdoors. Sol loves a rhythm, rhyme and beat, so turn up the volume let’s sing and dance. Mainly non-verbal he uses makaton signs, he gets frustrated, as he sees, hears and knows more than he can express, you’ll need to actively listen. Sol loves his school, a local special school, providing for his learning, sensory, well-being, and medical needs. The staff are skilled, knowledgeable and understanding, teaching hero’s missed hugely during the first lockdown.
When Sol was 2 years old we went to our local carnival, Sols dad collapsed unconscious due to an aortic dissection. Sols was asleep in his pushchair, it tipped over however luckily he stayed asleep during the chaos. Sol saw his dad on life support. I know Sol understood and his dad was aware he was in the room. Without surgery due to medical reasons, he passed away two days later. Sols dad Noel, born Christmas day, humble, peacemaker among friends, who dared to be different and a talented artist. We never forget the people that we love.
Sols has older siblings, a sister and two brothers who will be able to tell him about his dad. For now we say daddy’s gone in the bye bye box (memory box) like in his favourite TV programme Bing bunny. We sign daddy and star, Sol understands and signs the nursery rhyme twinkle twinkle little star. We still make fathers day cards and look at his photos and art work together.
Sol is the heart of our family, my teacher, the light and joy. He loves life and is loved beyond words. We should celebrate our differences it makes us unique, making this world a more interesting and beautiful place. We are the universe all connected by its divine energy. Embrace the darkness, shine your light and don’t forget to look up at the stars. As Sol’s favourite nursery rhyme says: row, row, row your boat, gentle down the stream, life is but a dream.
Power of 3
On this night and in this hour, ancient powers have spoken, let it be
One extra chromosome planted in me,
my family tree is blessed with three
Root to core, let me tell you the score, you’ve got two, I’ve got more
As easy as 1-2-3
Listen, doubt my superpower
a blessing not a curse
then move along
Whether I run, walk, or crawl I’ll set my goals and I’ll keep on moving
Or wait and see, you’ll be amazed
I’ll teach new skills, reshape priorities, transform perceptions and change you right to the core and more
I’ll show you the beauty, good
In the world
That’s my superpower
Thank-you God for making me.
Photography by
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