‘We really are the lucky few’… a mother’s story
Written by Tess’ mum Ailis
She just turned 18 months old and is loved and pestered in equal measures by her older brother Peadar, aged three. Tess and Peadar adore each other really and can usually be found wreaking havoc in the kitchen, with every toy dragged out from the playroom as it is obviously much more fun to create an obstacle course across the kitchen floor than it is to play quietly in the playroom!
Tess loves to eat and is a real carnivore, like her daddy, hunting out every morsel of meat in her dinner before she will deign to eat anything else. She feeds herself with a really good level of independence but has little regard for cutlery; it only slows her down in her opinion!
Tess loves music and is quite the mover, bopping around to anything from songs by Justin Fletcher, to classics from Creedence Clearwater Revival! Oh yes, and Tess has Down’s syndrome.
Tess’s diagnosis was a real shock to us the night that she was born, with no indication of it throughout what was quite a difficult pregnancy.
Unfortunately, we were one of those who were told by the medics that they were ‘sorry’ when they told us that they felt it was highly likely that Tess had Down’s syndrome. But since that awful first night, we have been supported by the most amazing medical professionals who have only ever focused on Tess’s potential and actively support her to achieve this.
Tess struggled with breastfeeding initially; a combination of prematurity sleepiness and low muscle tone making it really tough for her to manage a full feed. Cue a lactation consultant and round the clock support and belief from my consultant and all the nurses in the hospital who were just as determined as I was to make sure that we got feeding established before I went home. Not only was it an amazing way to boost Tess’s immunity and work those muscles in her mouth which will ultimately support speech, it gave Tess and I the best chance to bond and I definitely found it much harder than she did when we eventually stopped when she was 13 months.
I distinctly remember feeling angry and defensive in those initial days when people told me about the amazing Down’s syndrome community that we were now a part of; my family and friends were just brilliant and I didn’t want or need anyone else. Now, 18 months later, we have gained so many new friends and feel so lucky to have such a positive support network around us. Unfortunately, due to COVID-19, most of it has been online but we are looking forward to plenty of play and coffee dates in the future!
Tess is an absolute hoot. Her wee smile when she wakes brightens every single morning and we are so, so glad that she is ours.
We even created ‘Little Hands’, an initiative to celebrate Down’s syndrome and provide accurate and positive information for everyone. We truly believe that there is no limit to what Tess can achieve in her life, and we are so excited to be part of that adventure!
We really are the lucky few!
