We chat to mum Helen from @the_mantons family to learn all about little Eleanor and some facts and statistics surrounding Down syndrome.
Parenting Diaries | @baileyandthebabies
Back in October, we championed Down Syndrome Awareness Month - a celebration with a positive message that raises awareness by educating people about the condition.
Read our feature on Celebrating Down Syndrome Awareness Month | Interview with @the_mantons
One person who is passionate about promoting awareness around Down syndrome is Nicola, who documents everyday life on her Instagram feed with her three children Lucas, Quinn, and beautiful little girl Harper who is quite literally one in a million - in more ways than one.
Nicola says …
"Hello, I am Nicola, mum of three and also a nurse working within the NHS, which I absolutely love. I have three beautiful children - a little boy Lucas who is six and twin girls Harper and Quinn who are both two.
We have a very busy life as a family of five, even more so with the current lockdown as we’re now also home-schooling Lucas, which I’m sure most of us are feeling the struggle with in the UK right now."
Tell us more about your life with twins - how did you feel when you received the news you were expecting two?
I think having twins can be hard work at times but of course, has its huge benefits too. They naturally have a built-in playmate too and watching their little unique bond grow and grow has been amazing to see and makes me burst with pride most days.
When we found out we were having twins it came very much as a shock, I had been ill in bed from being 6 weeks pregnant, suffering from a condition called hyperemesis which is severe sickness in pregnancy.
This was very normal for me as I had suffered the same when pregnant with Lucas too. I remember the day we got told it was twins it felt like we were being scanned for ages and then when they told us ‘it was twins’ my husband went as white as a ghost and very nearly collapsed, there are still days when I cannot quite believe that I have twins even now, nearly three years later.
How did you adapt to life with twins - there are obviously things that were more difficult than when you had Lucas, but is there anything you found easier having two of the exact same age?
One of the things we found the hardest having two was setting a routine, as in the early days it felt like all we did was feed and change nappies but it does get easier as they get older and I think it’s been lovely that they have each other to play with, especially whilst being in lockdown for most of this year.
Little Harper was born with Down’s syndrome which is a one in a million chance for twins. Can you tell us about how you found out and the support you were given?
One of my daughters Harper, she was born first 38 mins before her sister, was diagnosed at birth as having T21 also known as Down's syndrome.
It came as huge shock to us as we had previously had all of the screenings and had never even considered Down's syndrome being in our lives.
We found out later that the chances of having one twin with Down syndrome and one without is a one in a million chance, so we consider ourselves very lucky to have her. The early days were very hard, and we went through almost a grieving process of what we thought we had lost but we soon came to realise that Harper having Down syndrome wasn’t the negative that we were led to believe, it has instead been a huge positive.
Harper having Down syndrome has changed our lives so much for the better and I cannot imagine her any other way, she is just perfect the way she is and I would not change her for the world.
What’s so amazing is how you’ve offered positive and encouraging support to other parents receiving the same diagnosis, via online support groups and workshops. What are three tips you’d give to parents faced with this diagnosis?
We have shared our story as we felt that seeing two girls born together and developing together would be a really good opportunity to show the true meaning of what Down's syndrome really is.
There is so much negativity surrounding Down's syndrome and there are lots of outdated information out there, but we have found that there really isn’t a negative; we have met so many amazing families who we now call friends online just by us having one extra chromosome in common.
I hope by us sharing our story, it helps others perhaps in the same situation as us in the early days. The three tips I would share would be as follows:-
1. Do correct research, speak to the families where they have a child with Down syndrome as I have found a lot of the medical research to be very out of date, and giving a list of things is not the same as living with Down's syndrome.
2. Don’t feel bad for the feelings you have, I had very dark days thinking why us, and wishing to change Harper but I have learned that those feeling are part of the process it’s ok to cry and grieve for what you thought your child was going to be.
3. Know that everything will be ok, you may not think it now but believe me when I say that Down syndrome does not consume your everyday life, there are some changes but day to day we live a regular life just like everyone else.
How has life at home changed during lockdown?
I think life for everyone up and down the UK has changed for everyone in lockdown, at the beginning of last year life was so, so hard for us as Harper was awaiting open heart surgery and was considered at risk.
We had to shield, we spent 5 months without leaving the house and it was mentally so hard as we were having to home school, provide home therapy for Harper as all of her face-to-face appointments stopped, and both my husband and I were both working from home.
But I have found that I am a much stronger person than I ever thought possible and my creative side has definitely been put to use making bug catchers out of toilet rolls and egg boxes.
Even though it has been hard we consider ourselves so lucky too! We have been able to stay at home and keep our family safe and for that I am forever grateful.
Do you have a particular routine that allows you to juggle family life and working from home?
We have all had to adapt our routines and we have had to change ours to fit everything in. I am a super organised person anyway and always have been which has come in handy while trying to juggle everything.
I’ve found having set timings in place always helps to keep some structure in place, so for example snacks at 10am and 3pm. On weekdays we’re all up and dressed for 9am, as I find sitting in loungewear all day doesn’t give me any motivation. On a Sunday I always take time to plan the week ahead, what schoolwork we have, any appointments for Harper, and then plan everything else around this schedule, and this seems to work the best for us.
Want to learn more about Down syndrome?
Website Positive about Down syndrome is a resource created by parents of children living with Down syndrome for other parents and those expecting. Head to the site to learn more.
Was halten Sie von diesem Artikel?