This week, our thanks go to Danielle’s mum, Christina Garland, who shares some of their experiences over the past 30 years. Danielle, we truly hope you get to celebrate your upcoming 30th in style!
On Sunday 21st April 1991, at 5.40 am, I gave birth to our beautiful daughter and second child Danielle. She was born in St Mary’s Hospital in Portsmouth, which was our local maternity hospital. She weighted in at 6lb 15 ½ oz and was 8 days early. When her big brother visited later in the day, he was very disappointed as he though his new sibling would be able to play football with him but “she was only a baby.” Mum, dad, mother-in-law and my brother all visited and cuddled and cooed and greeted my little arrival with love and smiles.
At 8pm that evening, just as visiting was ending and my husband was about to leave, a very nervous young man arrived at my bedside mumbling something about taking blood from Danielle. He obviously was very uncomfortable and I guess had hoped to sweep in, take the blood and not be challenged in any way. I caught the words Down Syndrome and for a while I don’t think I heard anything else. I was 27 years old and my husband was just shy of 30. (Six months later they announced that Portsmouth would be a pilot city for the triple test – as I fed Danielle I cried. Tears of it’s too late- I’m glad it’s too late – why do we need that test? and a whole host of other emotions.)
We were advised to go home and get on with our lives and put all our energies and love into our son – I declined. After a few days of readjustment and sorting out feeding and a sudden temperature drop, we took Danielle home, with a return appointment for about 7 days later for the results of the blood test, which was to determine whether or not Danielle had Down syndrome. By this point, I think we already knew and this was just a formality. One of the things that shocked me most, when we went back for this appointment, was that they hadn’t put her names on her paperwork. The reason I was given for this was that they weren’t sure we would keep her. I asked them to put her names on her records straight away.
We also discovered at this point that Danielle had been born with bilateral cataracts and we were referred to the local eye department to get these removed as soon as possible. So at 4 ½ weeks and 5 ½ weeks old Danielle had these operations, with an additional one required at 6 months old. This also meant she started wearing contact lenses – this was an experience – our record loss of lenses was 13 in one month. (Jamie became an expert lens finder- locating them around the house.) You would not believe what a small baby can do with their eyes, when her parents are trying to replace her contact lenses! After the first cataract was removed, she wouldn’t sleep, the nurses took it in turns walking her around the ward in her pram, so that I could get sleep. She just lay there watching the lights on the ceiling. The nurses fell in love with her – I was surprised they allowed me to bring her home, I think they would have happily looked after her on the eye ward.
Soon after this we discovered KIDS and what an amazing place that was for us. We made friends, laughed and cried with other families and supported each other with the highs and lows of bringing up a youngster with additional needs. We also began Portage. (Once she could move, Danielle became an absolute master and getting to the furthest point under the kitchen table, to avoid doing her Portage activities).
Baby number 3 arrived in December 1994, and Danielle learned how to get into mischief as my eyes were not always on her. Things that I have learned are not easy to deal with – microwaved stiletto shoes (not a good outcome), microwaved Sega Mega Drive Games (this wasn’t ours and burst into flames – a 4-hour tour of the local second-hand game shops ensued to replace said game), zinc and castor oil (a whole large tub all over the kitchen floor), a full bag of flour emptied, a whole tub of baby talc emptied -and various other misdemeanours. Oh, and woe betide her brother and sister if they left any sweets or chocolate anywhere Danielle could find it! The same weekend as the microwaving of the above items, Danielle (by now 5) discovered that she could unlock and open the front door – so dressed in her brother’s clothes and wellies, she took herself on a little excursion. Her absence was discovered at about 7am (she was a 5.30 riser – I thought we had been lucky with a lie in) when her sister announced that she couldn’t find Danielle anywhere. Panic ensued. I pulled clothes on over pyjamas and went out in the car circling the neighbourhood whilst Mike (dad) phoned the police – this was pre either of us having a mobile phone. The search seemed like it took days but in reality, was only about half an hour – a local lady phoned the police to say she had found Danielle on her doorstep talking to her dog through the letterbox. Individual door alarms were fitted to all exterior doors and her brother Jamie’s bedroom very quickly.
On a routine paediatric visit, the doctor asked if Danielle was always this active. As she knocked over a plant, turned on the tap, tried to escape….. the answer to this was yes, always on the go. Blood test showed hyper active thyroid – hence the overactive child. After a radio-iodine drink to kill off her thyroid function, as suppressants created a bad reaction, Danielle has been on thyroxine ever since.
The year Danielle turned 6, I made the decision to enrol in university to retrain as a primary school teacher. By now Danielle was attending the local infant school, but this wasn’t really working out and the decision was made at the end of year 2 for her to transition to the local MLD primary, which coincidently was next door to the infants. Although the relationship with the school didn’t work out, the relationship with her support assistant really did and she became Danielle and her younger sister, Katrina’s childcare before and after school, allowing me to study.
Danielle had replacement lens surgery when she was 7 meaning that she no longer had to wear either the milk bottle bottom glasses or contact lenses but could wear a more normal lens glasses. Primary school and secondary school were relatively uneventful, looking back, and then Danielle transitioned to the Support unit of the local college, where she fell in love with drama.
It was also about this time we caught a programme on Channel 4 – the kind we would normally avoid due to its title; “The Strangest Hotel in Britain”. However, the programme was amazing and introduced us to Foxes Academy in Minehead – a training academy for young adults with additional needs. The first year we applied, Danielle was unsuccessful, so we applied again the following year. She was given a 3-day interview. We had to drop her off and go away. For a couple who had never applied for respite and had always been the full care givers for Danielle, this was quite a challenge for us. We were thrilled when she was offered a place. We didn’t realise that the battle for funding would really test our metal, but funding was finally granted and we knew that she could go.
We dropped Danielle of at Foxes in September 2010 and my goodness she never looked back. The next three years, she learned how to work in the hospitality business, how to cook, wait tables and housekeeping, as well as how to live in the community, independent of her parents (who believe me were not very good at knowing how to let her be independent). She flourished. She loved it when we visited. Showing us her favourite place (like News and Booze!) but was always ready for us to leave again. She also loved to come home but couldn’t wait to return to Foxes and her life there.
After 3 years and with the support of the wonderful staff at Foxes, Danielle came home for 3 days before moving into a supported independent living house with three other ladies with additional needs. This is now her home and these ladies have become her family. She loves all the support workers and is a very happy young lady. There have been challenges but far more ups than downs.
Danielle worked voluntarily for a couple of different charity shops for a number of years, but earlier this year, she started work in a local café which is run to support people with disabilities in work. She has attended drama classed for many years and loves being involved in all of their productions. She is also a ballroom dancer, supported by her sister, who takes her to her lesson every Sunday, and has won a number of trophies, of which she is incredibly proud. Dance competitions are about the only time Danielle will entertain being girly and wear a dress. Her big dream is to one day appear on Strictly Come Dancing. She loves live music and has no inhibitions about singing and dancing at concerts. She is also a huge fan of Elaine Paige on Sunday and is so knowledgeable about musical theatre. She is really missing being able to go to shows but has a lot of vouchers to use when the theatres reopen and she can’t wait.
Sadly, all of these activities have been on hold over the past year but Danielle has coped so well with lockdown and not being able to see her family as much, better than many other people I know.
I was once asked, by a ‘friend’ if I would have had her if I’d have known she was going to have Down Syndrome. I feel this is a question that is impossible to answer, as ignorance would have come in to play. However, I can honestly say, with all my heart, I cannot imagine my life without her. Danielle never fails to make us laugh – she is funny and talented and an absolute joy to know. We have weathered storms and difficulties but they pale into insignificance against the positives and the good; the love and the laughter. She has taught me far more than I ever taught her and has made me a nicer, more understanding person. Danielle turns 30 in April and I sincerely hope we can celebrate in style – as Danielle feels every birthday needs a big celebration – and for this coming one she is absolutely right.