May is Prader-Willi Syndrome Awareness month. I could tell you all about the complexities of PWS. I could tell you all the symptoms. I could tell you about the medical interventions required. I could tell you about the therapies. I could tell you how the diagnosis changes you as a person. I could focus on the negative side of things.... but I won't.
Instead, I'll share with you the joyous moments. The milestones we waited for. The feeling of pride we have when The Lodger achieves something we never thought he would.
Just for one minute, think about your muscles that we mostly just take for granted. Think of the muscles you need to stand up from sitting. The strength you need in your core to stand tall. Think of the muscles you need to hold a book or to lift your arm over your head!
The Lodger has low muscle tone. This means that everyday tasks we take for granted are an extra challenge for him. At birth, The Lodger could only move his eyes. It's been an incredible journey so far in seeing him get stronger and reach milestones.
|The Lodger a few days old|
Just today, he took climbing to the next level. As you watch the video, think of all the muscles he needs to use to climb. Look at his feet supporting him, his legs lifting, the strength in his shoulders. Now think back to what I told you about him when he was born..... he could only move his eyes!
Video not playing, watch it on youtube here
Low muscle tone is just one symptom of PWS. Daily physiotherapy plays a big role in The Lodgers life. As The Lodger grows older, exercise will be important everyday to help him stay fit and healthy.
To any parents who've just received a diagnosis of PWS, your baby will get there. I could never have believed that I now have to rearrange furniture to keep him on the floor. I could never have believed that one day he'd just take off crawling. We're close to walking now but that's how The Lodger does things. We wait and wait... and wait.... and then one day, he'll have it mastered and off he'll go!
And on that day, The Day The Lodger Walks there'll be BIG celebrations!! Watch this space.....