She spends so much time in the hospital or at appointments.

Alot of time on her own, without Noah or the others.

Days, weeks, when she has to miss out on the things that her ‘friends’ and peers do.

Some have called it socially withdrawn.

The paed labelled her as institutionalized.

Whatever you call it, Ivy is struggling with playing with other children.

She has no problem with adults – she’s spent most of her life surrounded by big people

and not with our kids, they all accept Ivy for who she is,

they understand her normality -

but with others.

At the end of Summer there was an… incident;

Ivy was playing with a little girl about the same age as her on the beach, they were getting along quite well until the girl noticed Ivy’s line

and the needle

and the port.

She stepped away from Ivy and said that she didn’t want to play anymore because Ivy scared her.

Ivy tried to tell her that it was just her medicine and that it helped her to get better

but it was too late.

The little girl had skipped away.

It’s normal, I know, for other people to be weary of things they don’t understand, especially children

but since that day, there has been a noticeable difference in the girl.

She tells me she hates the port.

She tells me it makes her look like a monster

and she spends more and more time alone.

The beach incident has not been the only one, there have been others,

but that one seems to be the first,

where Ivy started to struggle.

It’s almost  like she’s given up trying to relate to other kids,

and she’s supposed to start school next year.

New people, who don’t understand, new bugs and diseases, new challenges

and we’re hardly coping now.

I guess it’s normal for kids, like Ivy, to feel as though they don’t belong.

I know it’s normal to want to be like everyone else.

I’ve explained to Ivy that those children are only scared because they have not seen a port or a line or a needle before – they are largely not part of their world

but, for now, it seems easier for the girl to pull away than to push through all the confusion and hurt.

I had a very long conversation with the paed yesterday, trying to figure out other options but when it all boils down to it,

I can’t change the way it is for Ivy, we can’t -

she needs the medication and the port to allow her some level of wellness.

What I can do is try to think of ways to promote understanding and acceptance.

It’s not an easy task, there are lots of limitations but I want to help her find her confidence again.

The paed is looking into things from his end and I have had some great advice already but I would love any ideas, suggestions and help -

a group think tank, if you will

because, you know, two heads are often better than one,

a hundred heads better still.