I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. sk_nicky1Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age.

But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic that is hard to explain or even illustrate. In a way, Nicky is shy, withdrawn. He does not speak much and it is hard to have a conversation with him just because I have to get the pliers to get words out of him. However, when he does speak, watch out. He tells it like it is. “No offense” he says at the end of a sentence if he thinks I might be upset (he has never once offended me). If he gets upset though, he can’t speak at all, his face gets all red, and if he wants to tell me what’s going on or explain to me in more details what he’s upset about, he has to write me a ‘note’ on my phone or iPad. For being a kid that hates to write, he’s quite eloquent that way.

skblogNicky is hardly ever angry, actually, I can’t remember the last time he was ‘mad’. The only time he looks mad and upset it’s either during bandage changes or if his little brother drives him crazy. Connor can be quite the pill, he plays me like a violin and has his daddy wrapped around his little finger, but he also talks and talks and talks, we often joke that he started speaking ‘late’ but when he started he never stopped! He’s always so full of questions, he’s a very curious little boy. These two are very close, they are best pals, but I try not to make Connor Nicky’s servant, although often he does it without complaining. He’s very happy to get Nicky his water, a blanket or whatever he needs, but I don’t want his childhood to be one that he will resent, rather one that he will look back upon and know that from his brother he learned compassion, to love without conditions, and I hope that when he’s an adult he will never feel the need to take care of his brother like many siblings of special need children do. I want him to help Nicky, but out of his own will, not out of duty. I want him to want to do it or not do it at all.

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The truth is, and I am not even sure how to say this, but by the time Connor is old enough and out of College, Nicky will either be partly/wholly cured or no longer with us. I don’t want to be a Debby Downer, but I know what reality is, I do have hope, but I learned long ago to take it all one day at a time. I don’t know what tomorrow may bring. I am keeping myself as healthy as I can so I can take care of Nicky as long as humanly possible, and I do hope it is for a very long time… so long that eventually he’ll be able to take care of himself. For now, all I can do is take each day as it comes, knowing, as this quote states, that someway, somehow, things will work out, maybe not how I would like them to be, just how they are meant to be,

Thank You for your continuous support, the endless prayers and to keep our spirits and hopes alive,

Love and Light,

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