Friday, 12 August 2016

A Glorious Adventure

Emily was born 24 years ago today, on the twelfth of August 1992. The Glorious Twelfth as it’s known.

What have I learned over the past 24 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Firstly, and most importantly, the birth of a baby, a new life, is a reason to celebrate! If you’ve just had a baby, Congratulations! If your baby has Down’s syndrome you will probably experience a myriad of emotions, hopes and fears, joy and despair, elation and dejection. This is perfectly normal. However, the main thing is to love your baby with all your heart, soul, mind and strength. Love your baby today and each and every day. Consider today, without letting the cares of tomorrow rob you of this moment as a dusty curtain drawn across a sunlit room.

When any baby is born none of us has any idea about what the future may hold. Will she be an artist? Will he be good at sport like his Dad? Will she be a daydreamer? Who will she marry? Will he understand his place in the world? Will he want to travel the world and see all that I have not been able to see?

The answer is, we don’t know. So it’s important to let them just be who they are one day at a time.

Of course, when your baby has Down’s syndrome your thoughts of tomorrow may be a little different. For us it was, Will she live? Will she be able to have a faith? Could she really understand who God is? Will she read? Will she write? Will she be poorly? Will she be bullied? Will she have friends? How will this affect her sister? Who will look after her when we’ve gone? Could she live on her own?

Right from day one, dark thoughts flood our very being like a river cascading down a waterfall.

Of course, we had no way of knowing what the answers to those questions would be or what was ahead of us. However, twenty four years later I can tell you this (consider me a voice from the future if your child is young) I would not trade this glorious adventure for another. Emily having Down’s syndrome has opened up our world to things we would never have dreamed possible. We’ve had opportunities to do amazing things, we’ve become friends with people we would never have otherwise encountered. Some of these friends are true, loyal, supportive, lovely friends and we have never even met them in the flesh – it sounds crazy but it’s true. We are a genuine community which exists to support, to love and to care for one another.  

Emily loves life! She does! She has learned to grasp opportunities that come her way. Her world is so much bigger than many people with no disability who choose to live a small, secure, safe life. You know, the people who consider an adventure to be switching the central heating off in March instead of April.

Emily reads all the time. She loves reading. She can write. She loves to sing and dance and act. She loves to do musical theatre, not in a special needs group (not that there’s anything wrong with that) but in a mainstream group where she can hold her own with the others. She’s got a part time job working in a hair salon. She has a strong faith, she absolutely loves church and understands who God is. She has friends. She can travel independently on known routes. She has hopes and dreams. She wants to get married. She wants to live away from mum and dad.

She knows that she has Down’s syndrome. And whilst Emily understands what this is and what causes it, she chooses to not let it define her. She knows that she needs additional support but she does not allow that to prevent her from doing the things she wants to do.
Babies grow to be children and children to be adults. No two people are the same whether they have Down’s syndrome or not. So I can’t tell you everything will be ok. There are times of struggle and challenge for us all. Tears of hurt, disappointment, tiredness, fatigue, joy, pain, anguish, hope. Tears of pride. When you see your baby, your child, however old they are, achieve something for the first time. This is the same for all our children, whether they have Down’s syndrome or not.

Emily has a riotous sense of humour. She can be silly but so can I. Mostly though she is sensitive, caring, compassionate, aware, discerning and working hard to live life to the max. She is my inspiration to be a better version of who I am. Rather than the world dragging Emily down, she is raising others up. Society would have us believe that people like Emily are weak. If that is true, I don’t want to be strong for there is a beauty made perfect in weakness. There is acceptance, there is tolerance, there is joy, there is hope, there is peace, there is grace, there is love.

Twenty four years seem to have flown in the blink of an eye. Remember to take time to enjoy your children, your family, your friends. 






And remember on the bad days it’s ok to cry, for tears have a healing quality. But don’t live there. Don't allow the worries of the future to permeate your every waking moment. Seek support. Seek those who lift you and they will often not be your family, who may not understand. Families are often the ones we expect to provide the support we need but it's not always the case. You may feel let down. Find a time to sit down and have the conversation where you allow them to speak and for you to listen without interrupting or being defensive. Then switch it round so you get chance to speak. It may take time but you're giving yourself a chance of progress when you agree to listen and to try to understand. It's not always easy but it's worth some effort with those you love.

Finally, surround yourselves with people who “get” you, who love you for who you are, people who support you and who love you unconditionally, just as I know Emily loves me.

I wouldn't trade this life for another. Those who believe Down's syndrome should be screened out of existence are like an ancient people who believed the world to be flat. And the only way this theory was proved wrong was when the brave adventurers left the safety of the known world, the proven and the familiar to seek out that which is unknown, untried, and unfamiliar and they discovered a new world, they plotted a new course and re-drew the map of the world. 

We ARE those adventurers, we need to show the "Down's syndrome denying flat earthers" the bounty of the new world, the REAL world, a world where people with Down's syndrome are educated, pass exams, get jobs, contribute to society and live life to the full. We long to live in a world where they are accepted, included and embraced simply for who they are, not how many chromosomes they have.

The Glorious Twelfth led to a Glorious Adventure. Here’s to a Glorious Future! Happy birthday Emily xxx