How was your night? Realities of looking after my special child

The sleepless nights you have: because he can't sleep, you also can't sleep. He doesn't eat, you also don't eat. He's frustrated, you're also frustrated. Physically and observing him during the day, there seems to be nothing wrong, but you know he isn't ok. Then you know it's going to be a long night. He's restless and you just cant find the reason why. My child is my daily bread, if he's sad I'm sad, if he eats I eat, if he has no appetite, I have no appetite, if he's happy, I'm happy. A mother's priority is always the well-being of her child.and if he isn't alright, you're not going to sleep for sure.

The sleepless nights usually start with seizures. The pain I feel for my child when he has a seizure and there is nothing I can do. He looks into my eyes and you can see he is in pain and he is almost asking 'why is this happening to me' and you can't explain. All you can do is hold him close and shower him with kisses until it ends. Even two minutes is super long when it happens because I know he is going through pain and doesn't understand why. The moment he is done, it's like nothing happen at all, he gets back to being a happy baby. That's when you know that this little man is a fighter.

The sleepless nights...oh boy, the irritability, the moaning, the jerks, the confusion. The moment you pick him, he feels all safe again and closes his eyes and then you lay him to sleep and he's up again. The routine is endless, even with babies with no condition at all, but it's more intense with babies with a condition. In the end, you are lacking sleep not just one day, but several days of it. And believe me, like any other human being when you lack sleep it shows and you become grumpy at home and a zombie at work. You snap at family members and they don't understand the grumpiness. Lol. Meanwhile you keep it to yourself that you've had a difficult night. Why complain anyway? This may probably be how it's going to be for some time so what really is the essence of complaining, I keep it to myself. 

Some days he will decide he doesn't feel like eating, Yes, he will go a whole day with you forcing him to drink just 5oz of milk. But I don't give up so easily, he shows no signs of hunger but I still prepare his milk religiously with the hope that he will eventually drink it. In the end , he never does drink it, I end up wasting minimum three bottles of milk when he decides not to eat. But it's ok, I prefer to prepare the milk and try than to assume he isn't hungry.

So when you ask me how was my night, I may have a slight smile and just say it was alright. When the truth is my nights are sometimes longer than my days, lol. But we take it all in good faith and make the best out of it. Since we both become vampires at night, I also occupy myself and become Giovanni's personal clown and pillow. Giovanni loves cuddles and songs and so I use the time to chat with him, cuddle  and sing songs. The sleepness nights, they are many so now that I have tuned my mind to this and occupy myself in doing stuff for him since we both can't sleep. It's the time I can cut his toe nails, ahaha. The precision and patience you have to use in cutting toe nails of your child whose foot decides to shake non stop sometimes due to his condition .

I really don't know whether this little boy had another life before coming to me but it seems he is in love with music from the 40s and 50s. I always have Nat King Cole on repeat for him, especially 'unforgetable', how his face lights up to that song. So at 1am we listen to dear Uncle Nat, which calms and soothes him for some reason.

It's finally 5am, time for me to get ready for work and someone is surprisingly falling asleep. Meanwhile mummy is exhausted and got a back ache and arm from all the cuddling and distonia. You would be frustrated without the sleep, I can assure you. While having my bath, I know it's going to be battle between my desk and head today at work. And then just about when I'm leaving to work, I kiss him and hold him to say a little prayer, just as I'm leaving the room I turn back to have a last glance  and there he is, curled up sleeping so peacefully, my heart goes all soft again and I go give him some more kisses before leaving for work.

My little angel, some of our nights may be without sleep, but we sure have many memories of them worth keeping. :)