To whom it may concern,
If one more person tells me that we have been here too long and that
I worry too much about things like
*when my daughter’s oxygen saturations fall below 89%
for a sustained period of time
*when she has breathing up with the above
*her suddenly wanting to sleep for a large portion of each day again
I think I might explode.
If there is one more insinuation that Ivy and/or I get
something more than her wellness out of the whole hospital experience
*a holiday from the six other children and my husband
*more one on one time with each other
*a break from having to cook the dinner
I may scream.
Here are my solutions to your accusations:
don’t run any more tests – you always say they mean nothing anyway,
don’t monitor her oxygen saturations.
That is a special kind of torture having it on all night and knowing that you
will then turn around and label me a monitor watcher and a worrier
if I report that her numbers are down.
If you don’t care to know what her sats are doing
then just leave the monitor off.
because the simple truth is, when her saturations fall below 90%
I will worry.
Don’t ask me what I think about my daughter’s condition.
I don’t know (that’s one of the reasons we are still here).
Don’t ask me about how I think she is going and then tell me
she looks fine to you.
If she looks good to you, then discharge us.
If you think we have been here too long
let us go.
I agree with you, we need to go home.
If you honestly believe that we are getting something out of this other than
the obvious healing for my daughter
I suggest you keep it to yourself.
Telling my girl that she should be outside in the sun,
running around like a normal child is just not helpful.
How do you think that makes her feel?
Don’t you think she would like to be doing all of that,
rather than going to test after pointless test
and having adults in her face telling her it doesn’t hurt (when it does)
telling her to give them a smile after they’ve frightened her
and turned her day upside down.
I know she would prefer playing with her sisters
or cooking pancakes for breakfast
or sitting on the verandah with her dogs
than anything else.
I feel very sad and overwhelmed because I can’t give her that right now
and when you make those statements, I have to explain to her why.
Do you honestly think that we enjoy being locked in a room for six weeks
while people watch our every move?
While you guys walk in and out of our fishbowl lives as you please.
Do you think its fun for either of us to not be able to use the bathroom
without the worry of someone walking in and judging the odour of our
or to live out of a suitcase
(and when we bring in more than one bag being asked
if we are moving in for good)
or to have nowhere to go when we are sad, upset or angry,
so that our emotions are always on public display
(and therefore yours to critique)
or to not be able to sleep when we should because we are waiting on
a doctor to review or to come and take bloods
(and then when we cannot keep our eyes open anymore being woken at
11pm at night for those things because that is when it is convenient to you).
Do you think that I want that for my daughter?
Do you even care how much stress our family is under
and how I would give anything for all of us to be together again
in my own home, where I can cook good and hearty meals
and sit around our kitchen table talking about our day.
How I would like to tuck my son and daughter in
just before I turn in for the night
and check on each an every one of my older children.
Do you even understand how lonely it is here and how it is
almost impossible to convey anything meaningful over the phone
or how much I miss my husband and our comfortable conversation,
how we can bounce things off each other without fear of judgement.
The simple answer to all of this is don’t assume you know,
don’t make pointless throw away statements,
don’t expect that we won’t be affected by them
and please, if you think there is nothing wrong with my daughter
let us go home.
P.S. When there is something in a test that actually means
my daughter *is* unwell and I haven’t been imagining things
(and that it will inevitably lengthen our stay)
at least have the decency to answer my questions
and don’t expect me to be happy about it when you won’t.