Open letter to my cousin on Down’s Syndrome Awareness Day


Dear Lewis

Today is Down’s Syndrome Awareness Day and I wanted to take the opportunity to thank you for being you.

We may have been born fifteen years and one day apart, but I really can’t remember you not being there and filling my life with laughs.

We didn’t know you had Down’s Syndrome until you were five months old, this gave us time to get to know you as a person, not as a label and I am incredibly thankful for that. Every day with you is full of laughter and fun.  I haven’t always had a happy face, but every Sunday that I saw you when you were growing up, you made sure I found one. My mum had always worked with people who had Down’s Syndrome, but I didn’t know any of them really well – everyone says ‘oh they’re so loving’ but the people with Down’s I’d met, before you were born, were grumpy! I hate that, ‘they’ and ‘they’re so loving’,  people with Down’s are very different to one another. Thankfully you’re only grumpy when you’re in Kevin the Teenager mode and you don’t cuddle strangers (another stupid ‘they’re so loving’ lie). You’re Lewis, not a stereotype!

You have been the glue that has held our family together since you were born, your personality is so wonderful to be around. You don’t know malice, you don’t know being nasty and I envy that – thankfully you know sarcasm! You are blessed with an amazing mum, who would walk through hot coals for you and I hope you know that the rest of us would too.

Darren and I love you as if you were our brother, not our cousin, and my heart swelled with pride when he made you his best man on his wedding day. You did an amazing job and you kept everyone in check. It takes a lot for him to get emotional, but when he wrote in your thank you card that you are his best friend and he loves you like a brother, this echoed exactly how I feel about you too.

I’m so glad you love Hairspray the Musical as much as I do, going to see it with you was a great day, for once I was not bothered about what the others around us thought and getting up in our seats to dance with you during the show, was brilliant. I’d do it again for sure, because you make me challenge invisible boundaries, your outlook on life is so great. You have taught me more about living in the moment and hygge than any book on amazon can ever do.

You’re just about to leave school and start an internship – OK social services haven’t been too great in supporting this despite you being the first person in your school to ever do this, but your family have got your back, especially your mum. Each and every one of us is so proud of you. It may be hard, you will encounter people who aren’t very nice, but don’t let their negativity have an impact on who you are. You have Down’s Syndrome, you are not Down’s Syndrome. It isn’t what you are, it is a part of who you are – an absolute legend, who is one of my favourite people in the world.

Stay you, Lewi Monk

Lots of love

Me x

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2 Comments

  • Devon Mama
    March 21, 2017 at 12:52 pm

    Beautiful post Nic – he sounds like a lovely young man and a great part your life! It’s so good to challenge those stereotypes and labels, plus it made me quite emotional!
    x

  • Nicola
    March 21, 2017 at 4:29 pm

    Beautiful letter. What an exciting time in Lewis’ life to be finishing school! I wish him the very best on this new journey.

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