Thursday, November 25, 2010

in case you were wondering...

recently, a friend of mine asked a question on her facebook: what are the "extra" expenses that you incur when caring for a medically fragile child, especially the expenses that you never expected or never thought about until you had this child?

great question, and WOW! did she get a lot of responses.

i know that i, for one, always believed that our health care system in ontario was fabulous... at least in that it covers so much. then asher was diagnosed. sure, i have never had to pay a dime for his care in the hospital, which is good (for example, the prostaglandins that kept him alive before and in the initial period post-hybrid, yeah. that one med costs $1500 per dose. at two doses per day. for 11 days. not to mention, the cost of the bed in CCCU - just the bed space, not the meds, surgery, nurse, therapists, docs, equipment, but just the bed space - is $2500 per day. and just in that first admission, asher spent 18 days in CCCU. and there were a lot of other meds, several doctors, heart surgery, tests, an MRI, oxygen, bloodwork, etc etc etc etc etc... yeah, thank the good Lord for Tommy Douglas, because there is no way we could have afforded to keep asher alive for just one day in there). most of asher's meds were covered, either partially (80%) or entirely, that sort of thing. i've never had to pay a doctor or a surgeon (thank God!). i didn't need to pay for his first feeding pump, although i would have had to pay for the replacement pump were it not for a generous gift from some charity (i still don't know which one).

but it's those other expenses... the ones you never think about... those are the ones that destroy you financially. things like transportation, parking and gas for appointments. food for the parent who stays with the child during admissions. food for the rest of the family when i'm away or just plain exhausted at the end of a looooooooong day (because that has usually ended up being "convenience" foods or take-out). it's things like special tape and tubes and syringes and formula. its the "special diet" asher required to gain weight, things like ice cream and whipped cream and tons of cheese and butter and mcdonalds. the "stuff" you buy for your other children in an attempt to compensate for your absence or consuming focus on the other child. it's the phone bills, as you try to contact (and/or co-ordinate) doctors and therapists, the cell phone that you must have at all times in case of emergency, and long distance calls when you're in the hospital or clinic far away from home. it's the internet access, so you can educate yourself on your child's condition, and so you can stay in contact with family and friends while in the hospital (and that's expensive). it's utility bills incurred because of your child's condition: asher needs the house warm in the winter (21-23C is ideal for him), and very cool in the summer (our a/c is set at 18-20C in the summer); when asher was refluxing all the time, it added up to a lot of laundry; hydro to run the feeding pump 20 hours a day, etc.

and with the boys' birthdays coming up, i just don't have the money for the party they really want (at a bowling alley), so we're going to do something fun here. and it's gonna be uber cheap. and i want to give asher something awesome because, well, he has survived four years! but um, yeah. not gonna happen. and i want to give bram something awesome because, well, he's awesome for putting up with this life. but um, yeah. not gonna happen. i'll figure out something good, i'm sure, i always do, but in the meantime, there's the guilt and panic. which leads us to...

the non-financial issues: the stresses on relationships and friendships. the guilt of "ditching" the other kids when asher gets sick. the stress of money-less-ness. the chaos and unpredictability. the feelings of freaxia and of being overwhelmed... i could go on,

getting the idea?

and asher is one of the cheapest and least complicated medically-fragile children i know of.


i want you to check out my friend's post. she wrote about this subject the other day (and did it better than i just did, i might add).

it will give you a clear picture of why SN/MF families struggle.

and so, since it's thanksgiving today in the states (asher has a lot of followers south of the border), and with the holiday season fast approaching, i'm asking you, gentle readers, to do something.

i know that a lot of people look for registered charities to give to at this time of year. if that's the case, i would ask that you donate to cardiovascular research at SickKids. if you decide to go that route, that is.

but i want to suggest something a little different, too. something you may not have considered. and of course, since i'm writing, it will involve a little story.

christmas for the kids and i is taken care of this year. i mean, i don't have to worry about anything. someone (whom i will not name, but rest assured this person is amazing) emailed me the other week to say that their family (including their parents) are giving us christmas this year. i don't have to buy a single gift for the kids. we will also be given groceries and gift cards, because they know that i'm low on funds (shocking, i know), so i won't need to worry about anything like that. honestly, just the thought of this gift is enough to make me cry. i'm tearing up right now, actually. this is such a wonderful gift for the kids and me, and even i cannot express how grateful i am for their generosity.

so here's where you come in:

we all know families with chronically ill and/or medically fragile and/or technology-dependent children. why not help out one of those families? you don't need to play Santa like my friend is doing. but you might think about buying a gift for each of their children (please remember the siblings). and/or something for the parents. or you might want to give something simple like grocery store gift cards. or get the oil changed in their vehicle. or rake their leaves/shovel the snow. offer to watch their other children while they go to an appointment. take a couple meals to the parent in the hospital with their child. whatever. just please, do something. you can't imagine how stressful this time of year can be for families in this situation (well, maybe you can after reading these posts... at least, i hope you can). please help someone this holiday season. even something small can make a huge difference in their lives.

Whatever you do for the least of these, you do for Me.     ~ Jesus

1 comment:

Wendy said...

I now cry whenever I come to the blog....I cannot listen to the song "Ordinary Miracle" without bursting into tears :)

And I had no idea how much a bed in the CCU cost per day. Let alone the drugs - like the life saving prostaglandin, wow.

Thanks for sharing this and all the other information with other parents out there. We need to appreciate that we have great in hospital care aka no bills BUT we have a long ways to go in supporting families once they leave the hospital to ensure they get what they need without losing their shirts and quality of life.