Friday, 4 October 2013


On any given day, when I do not think about it intentionally, I feel like we are living a "normal" life. Like any other family on this planet.

However, there are still many reminders that come up every now and then that show me how "special" our life is. Sometimes they come out of the blue and the facts are suddently shoved in my face.

Like when we have to apply for a new changing table with our insurance company because ours has become too small but we still need one.
When "normally" my son should be potty trained by now.

Like when I watch Sunny play in the sandpit and I am excited about that. And then, when I wonder why my child playing in the sandpit makes me so happy I become aware how long it took him to touch sand, let alone sit in the sand, take a shovel and a bucket and really play with it. Touch it, let it rinse through the hands or from the shovel into the bucket.
When "normally" playing in and with sand is the most "normal" thing to do for almost any child.

Like when I still have to buy baby food jars and feed Sunny with a spoon.
When "normally" he should be able to eat by himself, chew his food, and even use cutlery.

Like when Sunny sleeps until half past seven without waking up several times in the night or at 5:00 in the morning because I am immediately afraid that today will be the day when he has another seizure.
When "normally" I should just be glad that my kid finally sleeps through the night, every night, and longer in the morning than he used to.

Like when I see him lying on his stomach and flipping through one of his favourite books like an adult because I know how much work and effort and strength it took him years ago to finally be able to lie on his stomach and lift his head, if only a tiny bit.
When "normally" it should not even occur to me as something special.

Like when someone we know tells me what a good job I do with raising my son. How loving and caring and devoted I am, how I always bend over backwards for him. Because it always points out that nothing I do is "normal" and that we and our lives are just that, not "normal". And it makes me well up every time.
When "normally" no one should ever compliment me on parenting my son because it is what every mother does.

Like when I search the internet for hours on end in order to find a way for Sunny to go on a trip with us and sleep safely outside his own bed (which has room-high bars in order for him to stay inside and not endanger himself at night).
When "normally" you just book an extra bed for your child and put it to sleep there when you are on a trip. Period.

Those moments come and go but each time they sting and take away my illusion of "normal" for a while. Sometimes shorter, sometimes longer. But each time it still hurts - sometimes more, sometimes less - and it reminds me that my normal is not anyone else's normal.


  1. I feel the pain of your post. I'm not sure what to say, but I wanted to let you know that you are heard. While my normal is not your normal, it also isn't normal. I understand that raising a child with needs that are out of the ordinary requires consideration of situations that don't even cross the minds of most parents. Hang in there.

  2. It's strange the things we get used to, isn't it?

  3. Hugs to you, Joy! I feel with you when you describe all your obstacles. It's like explaining people without kids how it is when you suddenly have to keep little ones in mind. I don't really have an idea what you go through, because I'm not. But I'm wishing you many, many "normal" moments in your daily life, and improvements for Sunny!

  4. Oh I hear you Joy! I totally understand E V E R Y S I N G L E point in this post, I know that the fact that you are not alone, (cause you are not, I am there too) doesn't make you feel any better in moments like this, so all I can do is send you thousands of hugs.


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