Don’t you….forget about us

This is, without a doubt, one of the hardest blogs I have ever had to write. But such an important story to be told for someone to understand the impact they have had on our lives and what a truly special person they are.

When I first became a mother, I heard a lot of stories about amazing nannies. Popular sound-bytes might include “Oh, I couldn’t function without our nanny!” or “The kids prefer the nanny to us!” and “We’re bringing the nanny on holiday with us!” And I felt excited than when I did finally go back to work, I too would be blessed with this Mary Poppins character in my life.

But when we did find a childminder for my son, she was nice and provided good care. But I was disappointed to establish I did not especially want to bring her on holiday with us. And when my son went to nursery, it was a lovely place where he made lots of friends who are still amongst his best friends, but we simply moved on to school at the right time and said a fond farewell rather than weeping and wailing at the gates.

Then Marigold was born. And we knew very early on that neither a childminder nor a nursery was an option for such a unique little person. At nine months old she was still regularly ill with epic respiratory infections, on a range of meds and was just starting with therapeutic intervention. So we agreed to take the financial hit and found a nanny to care for her. At that point, we hadn’t really got a grasp on the extent of her needs but as time progressed, what started off as “just a bit of physio” gradually became occupational therapy, speech and language therapy, weekly emergency appointments at the doctors plus an increasingly frazzled and stressed mother. Crunch point was a week-long hospital admission (directly after my 40th birthday party – ouch) where I confessed to the people I worked for that I could no longer hold down a job having a child with what was now, obviously, very complex needs. And a wise women who I know will be reading this gently suggested that what I really needed, if I did still want to work, was not only more balance, but someone who was suitably trained to look after Marigold’s increasing medical and therapeutic needs and who could support all of us, as a family.

So exactly three years ago at this time, I scaled back to get my sh*t together and find a nanny who was experienced in the world of special needs.

As anybody who has ever had a nanny before knows, it can be an arduous process to find that person who is right for your child and your family. Finding that right person for a child with complex needs is even harder. The pool of talent for experienced special needs nannies is a much smaller one and particularly difficult to access. And we had some knockbacks. One nanny we offered to who decided to take a role with a typically developing baby instead as after consideration thought the role with us would be too much like “hard work.” Another who showed promise and then failed reference checks (always check references people. ALWAYS.)

Then I got a CV through which caught my attention. Maybe it was because the DOB was 1975 and I thought “Finally! Someone who will get my 80s references!” So we invited my fellow 75er, Jackie, to come and meet us.

Now the thing is with people in childcare, is that they LOVE being with the children. They go into childcare because they want to play with the kids. They don’t necessarily thrive in formal job interview scenarios with two corporate maniacs firing competency-based interview questions at them. But I remember Jackie saying that the most important thing was that we worked as a team for Marigold. And I liked that. And she was calm, mature, professional and a mother herself. And there was the 80s reference thing too of course. So we offered her the role.

And Jackie came very quietly and unassumingly into our lives and laminated her way into our hearts (more on the laminator later).

It is important to stress how difficult life was at that time. We were overwhelmed with the realisation that our beautiful little girl did not just have additional needs, but very complex medical and developmental needs. This was not a journey we had prepared for nor understood and we were poorly prepared on all fronts, especially emotionally. But as we got to know Jackie, she infected us with her passion for this new world. Having spent six years working in a school for children with complex disabilities, Jackie had so many stories and at the heart of all of them was her belief that all children with disabilities have so much potential, can achieve more than we could ever imagine, if only they have the right support. Jackie helped us to see the beauty and potential in the world of disability and special needs and set me on the path to becoming a disability advocate, determined to make the world a better and more inclusive place for those affected by disability.

For Marigold, Jackie is the person who understands Marigold her the most – sometimes even more than me. She quickly tapped in to the fact that she is highly motivated by certain things, and designed drawers full of bespoke resources to help Marigold with her therapy in a way that worked for her. I would often come upstairs to find Jackie drawing and colouring in the entire story of a children’s story with a bag of felt pens; beautifully hand drawn stories brought to life with moveable characters and the like: Three Little Pigs, Goldilocks, the very Hungry Caterpillar, The Gruffalo, laminated picture boards for days of the week, weather, numbers, colours and letters where Marigold, although she could not speak, could match things and choose things to show her understanding. Beautiful Jackie resources that show the journey of Marigold’s learning and which I will never be able to part with. (At this point I should also probably credit Jackie with single-handedly driving sales of laminating machines and pouches up by 100% and bringing the joy of the laminating machine into our lives.)

There is so much more besides, but it is also important to talk about the impact Jackie had on our son. Because it’s not easy, being the typically developing sibling of a child with special needs. Sometimes it feels like the world revolves around your special sibling. But Jackie tapped into my little boy’s psyche too to create a bond so strong, that when we talk about who we need to buy presents for, it is the grandparents followed directly by Jackie. That is where she ranks in his little world. She has helped him grow with arts and crafts, cake making, junk modelling, game playing, days out in London and Brighton and has been a key influencer in the development of the current Minecraft and Pokemon obsession. She has been the first person to hear about his day when she collects him from school and picks up on anything that might be troubling his little head. He has loved his walks to and from school with Jackie.

And for me, as a mother herself of two older children and in the absence of my own mother, Jackie has given me that all important advice and reassurance I have so often needed as someone who more than often feels like they are massively winging it and doing a crap job! In the past three years we gone through so much together, from Brexit to increasing political madness, running marathons (Jackie, not me, clearly), starting primary school, starting secondary school, doing GCSEs and so many other life events including a TV appearance on 24 Hours and A&E (you are welcome Jackie #plasticbag). She has always been frontline support to listen to my ramblings and worries and downloads on a global and a local level. And we have laughed and cried and supported each other through things and suddenly without really realising it, there she was. The nanny that I did want to bring on holiday with us! That I couldn’t live without and dare I say it that yes, in certain moments, the kids do prefer to me!

So it is with a very, very heavy heart we say goodbye to Jackie today as Marigold has gradually scaled up to full time education. A bit like Mary Poppins herself, Jackie appeared at a time when our lives felt dark and dysfunctional and employed her unique brand of lifestyle to bring colour and happiness and cartoons into our life and now she moves on to do the same with another family. And I am not sure what the hardest thing is: that Marigold may not understand where she has gone, or how much Harrison will miss her or WHO is going to listen to my Brexit rants and discuss an imaginary school set up for kids with moderate learning disabilities on the back of a fantasy lottery win now Jackie? WHO?????

Our hearts are breaking to say good-bye but we feel so lucky to have found a lifelong friend that will always be part of our lives. One of the most wonderful things about a child like Marigold is that when those truly special people come along that are part of our team, you never, ever let them go. So I have written this blog not to campaign for a cause or to highlight an issue, but for Jackie to truly understand the impact she has had on our lives, how grateful we are to have met her, how much the past three years with her means to us and how we hope she will always be a big part of our journey.

Because sometimes words are not enough.

Unique is the rare chromosome disorder charity providing support, friendship and knowledge for those affected by rare chromosome disorders. If you have read and enjoyed this blog, nothing would make me and Jackie happier than a donation to keep the amazing work they do for families like us going. You can donate on https://www.rarechromo.org/donate. Wishing you all a very Merry Christmas and all the best for 2019.

 

 

 

 

 

 

 

 

 

 

 

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