17 years ago
When I heard my baby had Prader-Willi syndrome (PWS), the world stood still for a moment.
At first I felt sad when, after four months, a diagnosis finally came. Because now it wasn't going to "just pass" or get better on its own. On the contrary - there was a whole story and a future tied to it that I wasn't ready for. I mostly felt resistance, and later perhaps a bit of relief. The searching and tests were over. There were now options, appointments and an association with knowledgeable people I could hold on to or dive into. But there was also sadness, uncertainty and fear of the future.
Then came being "lived". We were mostly busy with appointments, examinations, feeding, hospital visits and gathering information. Really, I wanted just one thing: to enjoy my baby and build a strong bond.
A pink cloud?
But how do you do that when your little one struggles with muscle tone, alertness, feeding or development? When your life is taken over by appointments, pumping and feedings?
Everyone around you tells you to "enjoy your pink cloud", but the reality felt very different. A baby with low muscle tone sleeps almost constantly. When awake, there is barely any muscle tone, little response and no strong eye contact yet. I loved my baby with everything I had, but alongside the primal force of surviving and caring came the question: will this be okay? Why don't I feel that deep, natural connection?
It feels like you have nowhere to go with all your motherly love. You have to convert that feeling - the pink cloud you've been moving toward for nine months - into medical caregiving. And that's quite something.
My discovery: Peter Walker in the UK
I of course also went online to look up Prader-Willi syndrome, and what did I find... As if it was meant to be. Peter Walker in the UK massages babies with hypotonia. He focuses specifically on the development of babies and young children, including babies with PWS. And he was getting beautiful results.
I thought that was wonderful. I would have loved to fly to London right away to learn it, but with a three-year-old and a baby with PWS at home, and a partner who was often away, it was impossible. I started following Peter and already learned a great deal from him online.
More than just massage
Developmental Baby Massage is not an ordinary baby massage. Through touch, movement, observation and contact, you learn to better attune to your child's needs.
The goal isn't just to solve problems. The goal is to make a connection. That connection is precisely what forms the foundation for development. It supports bonding and the reaching of all motor milestones from birth until they can stand.
During the COVID pandemic, Peter Walker started giving his training online. I signed up immediately, completed the course and earned my certification.
My mission now
Now that my baby with PWS is almost 17 and a head taller :-), I realise my journey may have had a deeper meaning. I want to share this knowledge and this peace of mind with the PWS community. And not only with PWS parents, but with all fathers and mothers of a baby with a developmental delay or hypotonia.
To deepen my expertise even further and master the very latest techniques live, in mid-October I'm taking an exclusive online specialisation course directly with Peter in the UK.
Behind the scenes I'm working hard on a beautiful at-home offering and an online connection course. I hope to bring you something wonderful in autumn.
*As a parent of a child with a developmental challenge, I know how important it is to look not just at the diagnosis, but above all at the child and the connection you build together.*
In closing
Back then, with a few years of massage experience, I immediately understood why Peter Walker's Developmental Baby Massage was the missing link for my daughter with PWS. Today, 20 years later as a massage therapist, I realise how important touch and connection are for everyone.
And how good it is to slow down and connect now and then.
I would love to hear how it's going for you. Let me know via the contact page or send a message on WhatsApp.
Relaxed regards,
Sandra