It's meant to be one of the best days of your life. It's meant to be full of joy and amazement. It's meant to be filled with well wishes and time stopping moments as you just marvel at how incredible your tiny baby is.
It wasn't like that for us. Not at the start.
We had one carefree hour with The Lodger before everything turned horribly wrong and we were left feeling empty and confused, angry, guilty and sad. Terribly sad.
The second time I met The Lodger he was hooked up to wires, in a room with twenty incubators with tiny little babies all fighting their own battles. Beep.... beep... beep... beep beep beep. It didn't take us long to understand tubing, wires, machine sounds, hospital routines and hushed conversations. The frustration of trying to change a nappy with wires attached to his feet and chest. The feeling of inadequacy as you try to feed him 10mls of his bottle that he just won't take, as you manipulate his jaw to suck and wish you had another set of hands to untangle the wires or readjust his oxygen tube. The lack of privacy as you just want to cry and cry but the mum beside you is putting on a brave face and singing lullabies, so you just join in with her.
We lived in a bubble. We waited for the doctor to say there was a terrible mistake and he is fine and ready to go home. We waited and waited. Blood was taken, no results yet. The lab messed up, more blood. The wait continues.
And then the day arrives... the Doctor walks into the room and asks 'Has anyone spoken to you yet?'
'No', we reply.
'I'll get a chair' she says.
And you're in it, the moment that will give you your child's future.. the diagnosis.
Prader Willi Syndrome.
You very quickly become an expert. You finish reading the internet on Prader Willi Syndrome even though you've promised yourself you won't google it.
You try to look for something positive. You try to be positive. You try to do and read everything you can to make your child's life the best it can possibly be.
But somewhere along the road, you're not sure exactly when, you take a breath. You pause. You get to know your child. You start to see him as the person he is.
I wish I could rewind three years and go back and talk to us on the day we became parents.
If I could get in the DeLorean, this is how The Lodgers birthday would go.
Doctor: 'It's a baby boy, have a little cuddle mum'
Nurse: 'We're just going to clean him up, he'll be back with you in one minute'
Nurse: "Isn't he lovely Dad!'
Wheeled into recovery room. Different nurse 'How do you feel?'
Me 'It's hard to put into words'
Nurse 'Wonderfully surreal?'
Me 'Yes'!
One hour later, he's taken to NICU (Neonatal Intensive Care Unit).
But just then, there's a flash and we appear from the future...
Hello us in the past, we're here to tell you that everything will be ok. He'll be diagnosed with Prader Willi Syndrome but don't let that scare you. You both will be incredible parents. He'll teach you to become strong in hard moments. He'll make you a better, more understanding person. He'll teach you patience. He'll open your eyes to a world you knew little about. You both will help him reach his maximum potential and he will.
He's 3 now and he amazes you everyday. He makes you laugh a lot.
Just the other day he had you all singing. He'll call you into the sitting room to give you a lego flower he made. He'll drive around on his car, just like daddy. He'll finish a jigsaw and be so excited to show you. He'll love animals so much that you have to read a story about horses every night. He's clever and can pick up new things easily. He loves cars and dinosaurs and making a mess. He'll reach his milestones in his own time and you'll celebrate each and every one.
There will be hospital appointments, many hospital appointments. The long waits in waiting rooms will be entertaining as he'll befriend everyone and cheer as people are called in to see the doctor. You'll educate professionals on PWS and spread awareness. You'll become therapy experts with help from his early intervention team- physiotherapy, fine and gross motor skills, speech therapy and the use of signs to help him communicate will become a natural part of your daily activities. He'll learn animal noises before he says Mum and Dad, but he will soon know everyones names and many words. His first Christmas will be spent in hospital but from that a new tradition 'Henrymas' will begin! There'll be a harness to fix his hips, leg splints to give him support, sleep tests and a cpap machine but he'll step up to every challenge. In an odd way, it will all become natural, just part of your new routine.
He'll inspire charity events and form a massive team of support for himself. He'll cheer on cyclists and runners and people on motorbikes. He'll charm strangers and make everybody smile. He'll amaze you with his courage and determination in challenging moments. He'll take his time. He'll grow in confidence as he gets stronger. He'll give you the best hugs and kisses. He'll understand everything you say to him. He'll make friends. He'll have a great imagination.
He'll understand No means No. He'll love swimming and being outdoors. He'll love reading books and having you read stories. He'll include everyone in the room in whatever he's doing. He'll be happy to share. He'll celebrate other peoples proud moments with cheering and clapping.
He'll be happy. He'll be healthy. He'll be The Lodger.
So try not to worry, take each day as it comes and don't stress about the future. In his three years so far he's been heroic and has gone beyond all your expectations. Don't be afraid to dream of his future, it will be a bright one.
Enjoy everyday and don't let Prader Willi Syndrome take over. He has PWS but it is not him.
One area of deleted genetic information on one chromosome does not make a person.
Happy 3rd Birthday to you our extraordinary son. There is not one person we love more. We're proud of you every moment of every day. We're looking forward to more adventures in the world of The Lodger and Us. x
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