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Seeking 'normality'

It must be such a comforting experience to be able to send a child to school and not have to worry about how they’re getting on. I feel guilty just writing that sentence. Parenting a kid with special needs does that.. guilt. 

It must be a comforting experience not having to keep your phone near you incase the school ring and hoping they won’t ring but when your phone does ring you’re relieved when it’s not the school but your heart skips a beat when it is. 

Then you answer the phone with your heart racing and you’re told what’s happened... and as you end the call your eyes are tear-filled, as even though you said you’d be strong, it rarely happens. And then you feel guilty because whatever you’re feeling, you know your child is feeling worse. 

It must be comforting to go to pick up and not have to be prepared that your kid had a hard day, that when you open the communication copy, you make a wish to read a positive account of the day and not a day with incidents. 

It must be comforting to know that your kid is just happy in school and not ‘that child’, the one with the problems and the one that causes problems.

Every day you start with the mantra of this is a new day, you find the strength and tell your child to have a fantastic day and he smiles and says he will.

And it breaks your heart, because deep down you know he’s trying his best every moment but sometimes PWS gets the better of him and as much as he tried his hardest to control it... he can’t.. and he doesn’t know why.

When he gets home, he’s sad, defeated again and cries and you just want to hold him and hug him and tell him it will be ok.. and you do but you know he will face hard days... and as much as you wish this was the last one, you have to build him back up and help him to face another day. A new day. 

It breaks your heart when he tells you how worried he is about what people will think, about what people will say. It breaks your heart when he asks will they know it was a hard day for me, will my friends like me, that he’s worried about it all. He’s seven. Seven years old and so sad and worried and confused because he doesn’t know why he has hard days. 

And it breaks you, it breaks your heart because you can’t be there every minute to help him and mind him and protect him. 

And he must be so scared and sad and worried inside his tiny little self, as he’s just a child.... your child. And he doesn’t react like he should, like his peers would until he is home and he feels safe and people, as good as they are, don’t understand. 

My son, I’m sorry. I’m so so sorry that it’s you that has to have PWS and I wish I could take it away and make everything ok. 

Bring back the good day... it’s within our grasp, I can feel it.... 

I’ll always be proud of you. I’ll always love you. I will always have the strength to help you face the hard times. I’m so very sorry that PWS makes things so very hard for you.

I envy your strength, the incredible person you are. At just seven years old you have faced so much. 

I just wish I could take PWS away and we could just enjoy that feeling of comfort others have.. where days are just days. 

The guilt that I feel in even typing these words about wanting to know what it’s like to just have typical parenting worries. 

But my son, 
I will be strong for you and with you. 

We will face a new day together. I just wish I could be by your side helping you get the best out of every day... and helping you face the hard days. As there will be more and it breaks my heart that I can’t promise you that there won’t be. 



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