01522 steps back...

It's really hard sometimes to be the parent of a "sick" child, especially when he's not "sick enough". He doesn't have a life threatening illness. He's not in the PICU (thank God!). They look at Jordan and see what looks like a perfectly healthy toddler. It's extremly frustrating though because I am the one up with him in the middle of the night as he screams at the top of his lungs and can't calm him down, when no one else can see it. I am the one who has to watch his eyes roll back in his head and his body go limp when he has a seizure. I'm the one that has to grab him from the booster seat to hit his back because he's aspirating on food. These are the things I deal with that no one usually sees.

It's hard because people can see the needs of the parents of a "SICK" child (gas money, meals, childcare, etc.) But the parents of a kid who's not "sick enough" often gets overlooked. I'm not saying this to complain, it's just life and it's what I experience.

Just an idea of how much a "trip" to UNC costs:

Gas: $20-$30
Room at the Ronald McDonald House : approx. $20 ($10/night)
Food: We try to eat what we can at the RMH, but it usually is another $15-$20.
Parking: Parking is up to $10 per day.
Babysitters: varies any where from $20-$100 depending on the availability of my parents and whether they have to work.

Usually an average trip to UNC costs us around $100-$150 depending on whether we have to pay for babysitters, and these are all out of pocket expenses. Since January, we've made 8 different trips to UNC.

Again, I'm not saying this to complain-I'm saying this as a wake up call to anyone who might read this. If you know of a family going thru any sort of extended care with their child, especially if they have other children, please ASK THEM what needs they have. They'll feel bad enough that they can't "do it all" and most likely won't ask for help, even if they need it. Pass on the kindness, because you never know when you'll be needing help but not want to be a burden.