March 14th – 21st is Down’s Syndrome awareness week, culminating in World Down’s Syndrome Day, when we celebrate all the wonderful, unique people who have Down’s Syndrome.
So, what is it like to be the parent of a person with Down’s Syndrome? To give you some idea I would like to share with you some of my experiences and the things that I have learned during ten years of living with and loving a person with DS.
This post is a letter from me to Freddie written on the occasion of his tenth birthday, in which I tell him about his early days and compare them to where we are now.
This post first appeared on the Firefly Community website in November 2018.
Happy Tenth Birthday, Freddie.
I find it difficult to believe that a whole decade has gone by since you came into the world, the years seem to have passed in the blink of an eye.
You were due to be born at Christmas, but actually arrived six weeks early, in the middle of November. Because you were born early, you were very small. All the baby clothes I had bought and put in the drawer ready for when you were born were too big.
Nana Jean had to go out and get some extra-specially tiny ones. Harry and Lucy couldn’t wait to hold you. I don’t think either of them had ever held a baby before.
You were the first.
I was very happy that you had been born, but it made me very sad that you were too poorly to come home with me straight away. You had to stay in hospital for six weeks.
I came to visit you every day and stayed for a long time. For the first three weeks you were in an incubator (a special cot that keeps early babies warm and safe), and after that you went to the children’s ward and slept in a little plastic cot that looked a bit like a fish-tank.
I stuck photographs of Harry and Lucy to the outside of it, where you could see them. Me, Daddy, Nana Jean and N’Auntie Brenda took it in turns to stay with you, day and night, so you were never alone.
You left the hospital on 1st January 2009 – the best New Year’s Day ever.
Now you slept in a basket next to my bed – but you soon outgrew it: you used to wriggle about so much that the basket would wobble and I was scared it would tip over and you’d fall out, so we got you a big wooden cot instead. Sometimes either Harry or Lucy would climb in to give you a cuddle.
They’ve both always been very good at comforting you, and very happy to do it. I hope it is because they remember how daddy and me comforted them when they were little. Now that we have moved to a new, bigger house, you have a new, bigger bed: a full-sized one just like Harry and Lucy have. It’s the poshest bed in the house.
I love it when you wriggle under your quilt at bedtime and say ‘Ooh, comfy!’ as you settle down for sleep.
A first I had to feed you every three hours, day and night, and it would take you more than an hour (that’s 60 minutes or 3,600 seconds) to finish your bottle. Then it would take me another hour to make sure I had enough milk ready for your next feed (I’ll explain about that when you’re older).
I must have been very tired but I don’t remember that now; I just remember being happy that you were home with us at last, so I could be with all the people I loved at the same time. You found it hard to learn to chew: I had to mash all your food until you were five years old.
I waited a long time to be able to treat you to a McDonald’s alongside your brother and sister. Even now, I still love just sitting beside you watching you scoff chicken nuggets, especially now that you have mastered munching and chatting at the same time – who cares about table manners?
I first started reading to you when you were still in the hospital.
I took some of Harry and Lucy’s old books and read them aloud while you lay on my chest under a blanket. You had a machine taped to your foot that measured how well you were breathing. You always got top marks for breathing nicely when you lay on me and could hear my voice.
If you were in your incubator and you heard my voice you would scream until a nurse took you out and put you in my arms. I’m glad you haven’t grown out of having cuddles with me yet. On some evenings now, though, it’s you who reads aloud to me. I never knew what order the planets are in until we read your First Big Book Of Space together.
And I would never have heard of a Giraffatitan if you hadn’t found them in your dinosaur encyclopaedia. We named the ones in the picture Geoffrey and Gemima. I have to remember that, because every so often you randomly ask me what their names are, when we’re walking home from school, or eating our dinner, or something.
You were one year old when you crawled for the first time.
It was Christmas day, and you managed to creep almost the full length of the living room in one go; that was your present to us. You began to walk when you were three-and-a-half. Lucy used to prop you up against the wall, kneel down just in front of you and let you flop forward into her arms.
Gradually she inched further and further away, so that the flop became a stumble, and then a step. It’s still her proudest boast – that she taught you to walk. Now we march to and from school together every day; we can even make it all the way into town.
Now it’s autumn we kick through the fallen leaves and look out for squirrels in the big horse chestnut trees that line the road. At least I look out for squirrels, you’re more interested in dogs. We can’t pass by one out for walkies without stopping to make a fuss of it, ask its name and age, and ordering it to sit, or shake paws.
Your first word was ‘Hiya’, and for a long time it was your only word.
By the time you started school you were using between 20 and 30 words reliably. I have lost count of how many words you have now, whole sentences full of them. Sometimes you stumble over your words and get them mixed up because your brain is going faster than your mouth can. You have so much that you want to say.
You understand so much more than you are able to tell other people about. That’s why I ask you lots of questions when we are walking home from school: I want you to practice talking about the things you have done and learned each day. I’m sorry that I don’t always hear what you say first time, and have to ask you to say it again.
I do that because the things you say are important to me. It makes me happy when you talk to me, even if you are saying no because I have asked you to do something you don’t like. It is good that you can tell me about what makes you sad, so that I can help you. We can talk about what we can do to make it better.
I love to hear about the things that make you happy, too.
Last year, for the first time, you were able to ask me for a book that you wanted, and we got it for your birthday. That was your First Big Book of Space. This year you have asked for another book about the Solar System, and you have waited a long time for it.
Remember we chatted about it on the bench beside the park; I told you then that it was three months until your birthday. But now November is here, and the book is ready and waiting in my secret hiding place for the big day. I can’t wait to read it with you, snuggled up on your bed.
The first ten years of being your mummy has been an adventure.
I don’t know what the next ten years will bring us, but whatever it is we’ll face it together, hand in hand, with a book and a blanket at the ready.