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#121 of 137 Old 04-02-2009, 07:58 AM
 
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You know the hours of operation of every grocery store, shopping mall and restaurant and when they are the least busy so that you can avoid as many people on your outing as possible to reduce the risk of infections.

You wish that there were disposable pediatric respiratory masks that DIDN'T have Disney Characters on them but you use the Disney ones anyway because at least they do the job. (Even though you hate brandification.)

Your two year old starts rubbing his hands together whenever he sees a bottle of hand sanitizer.

Your child is prone to flashing people to show them his "Boob" which just happens to be his V.A.D. bump.

You contemplate dressing your child up as Frankenstein for Halloween due to some really awesomely placed surgical scars on their neck.

You carry EMLA cream and tegaderm patches as well as a digital thermometer with you everywhere you go.

You hear I.V. poles beeping in your sleep even when you're not in the hospital and all you can think about is rolling over to press the "silence" button.

You call your kid a cyborg with absolute love.

You call your child a vampire with absolute love, although if he truly were a vampire he'd be fat due to the vast amounts of blood consumed.

You think pictures of your child WITH hair look kind of strange and even a little fake.

Your routine when you go into a restaurant is to make sure that absolutely everything that your child will come into contact with is wiped with rubbing alcohol. Forget the highchair, you bring your own whenever you can.

Your kids don't even blink at taking their meds.

When people launch into the "My baby is developing better/faster than yours." competitions you reply in the very next breath that your child glows in the dark. Even better, you don't even laugh when you say that.

You reward yourself for not screaming "No, it's because you're a dirty nasty walking infection risk and I bet you don't even wash your hands after going to the bathroom." at the person that audibly assumes that your child is dangerously contagious because they're wearing a face mask.

You proudly tolerate all of the people making snarky comments about the lengths of your non-hair-challenged BOYS' hair and you secretly enjoy the contrite looks on their faces when you offhandedly remark that those same boys with the long hair are growing their hair because they want to donate it to kids with cancer. (Okay, so one of them also wants to look like Princess Leia, but nobody needs to know that!)

You have shaved your head even though you look horrible with a shaved head, just to raise money or bring awareness.

You no longer see Doctors as any sort of authority figure and will fire/order them about as necessary because THEY work for YOU.

You have held it to the point of considering wearing diapers due to the lack of non-chemo patient washrooms within range of your child who won't let you out of their sight. And you've done this for weeks or months while living on ward.

You haven't said "Nothing, what's wrong with yours?" to the people who have asked what's wrong with your stroke survivor child's face. But you kinda wish you did.

You have dealt with the terrible twos and 'roid rage. At the same time.

Your idea of "me" time involves having a nice hot bubble bath with candles and a nice book- and your toddler sitting in their bath seat in between your legs. The bubbles at least muffle the splashing/playing sounds so that you can pretend you're alone for a few minutes.

You spent over $8000 on cafeteria and medical visit related food and expenses in the last year and those are just the receipts that you can find in order to declare.

You're an old hat at heli-ambulance transport and the pilots/EMT's remember you and don't even bother telling you the procedures because you know.

You enjoy looking at your kids' brain scans because they're so cool. Especially when they can do ultrasounds through the fontanel while it's still there.

You don't get what the heck people are whining about when they talk about their epidurals.

You absolutely expect to be arrested for beating up the next person who officiously says "Oh, well leukemia/treatment of leukemia is NOTHING nowadays." :

You've sat with your child through minor surgeries, bone marrow biopsies and lumbar punctures and you feel less squeamish about those than you do about your kid cutting himself through normal activities.

You're a notorious medical supply thief and you know which nurses to enlist in helping to liberate the more obscure things.

Your kids lecture complete strangers when they cough or sneeze improperly. (It's in the elbow/armpit people!)

Even though you are AP you prefer that your child ride in their stroller, because at least then you can use the plastic rain shield as a barrier from other people- even indoors- when it's not even raining outside.

You will nurse your child until he's ten if that's what it takes to keep him infection free and give him all of those lovely anti-cancer proteins. And you'll proudly do it in public too!

You will freely laugh at yourself for still being an no/delayed vax. parent with toxicity being at the topmost of your list- even though your kid is has been on practically every purposefully cytotoxic drug under the sun.

You worry about how many times you should be rinsing your cloth diapers to ensure that the rest of your family's laundry won't glow in the dark.

You absolutely do not fear a future diagnosis of cancer in yourself even the least little bit. And you kinda want to raise your eyebrows at adults that make such a big deal of their own diagnosis when the kids don't even bat an eye.

You know who your real friends and family are and it's the people you never would have imagined could be so wonderful that actually are.

Your kid owns more hats than you do shoes, and you've paid more for a single hat than what you've ever shelled out on a pair of shoes for yourself.

You absolutely thank the T.V. gods for their wonderous gift of isolation ward friendly entertainment and the catatonic state that entertainment induces. (You also eat a heck of a lot of crow for being when of those "No T.V. until at LEAST 2." parents beforehand.)

You treasure every minute. Every. Single. One. :






I know I'll think of more... I REALLY like this thread!
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#122 of 137 Old 04-02-2009, 08:20 AM
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You absolutely expect to be arrested for beating up the next person who officiously says "Oh, well leukemia/treatment of leukemia is NOTHING nowadays."
this one nearly made me cry. Although Aurora never finished treatment (she ended up being one of the 6 percent who developed seizures, which were eventually fatal), I probably would have been physically violent with anyone who dared say that to me.
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#123 of 137 Old 04-02-2009, 08:27 AM
 
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Originally Posted by black balloon View Post
this one nearly made me cry. Although Aurora never finished treatment (she ended up being one of the 6 percent who developed seizures, which were eventually fatal), I probably would have been physically violent with anyone who dared say that to me.
I am sincerely sorry for your loss and I can definitely relate to being in the territory where the "cure" is sometimes in many ways worse than the disease itself. I can not even fathom having that be true to the point of fatality and my thoughts are with you.

We have lost too many friends and have been through too much ourselves to even dare call leukemia "nothing".

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#124 of 137 Old 04-02-2009, 09:50 AM
 
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Originally Posted by 3-StarSystem View Post
You contemplate dressing your child up as Frankenstein for Halloween due to some really awesomely placed surgical scars on their neck.
AHHHHH!!!!!!!!! Hilarious. I totally got "in trouble" with dh because I suggested we do this while VeeGee had her distraction appliances (hey, it was Halloween!!!). DH - not amused. But, heck, there were two little pins sticking out of the side of her jaw - JUST LIKE FRANKENSTEIN!!!!!!! :

Quote:
You hear I.V. poles beeping in your sleep even when you're not in the hospital and all you can think about is rolling over to press the "silence" button.
And this is us too. Even when we know the machines aren't running, we hear that blasted beeping. In our sleep, while we're watching tv, doing the deed, running errands . . . . . .

Good ones!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#125 of 137 Old 04-06-2009, 02:30 AM
 
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You contemplate dressing your child up as Frankenstein for Halloween due to some really awesomely placed surgical scars on their neck.
Haha! I would have dressed Faith as an oompa-loompa for Halloween, since she was already orange! Now she's starting to turn pink so I won't be able to anymore...

doula, wife to Dave ribbonyellow.gif, mom to Noah (5/14/06) superhero.gifand Faith (11/13/08) ribbonlime.gif (Gastroschisis Awareness) 127 days in the NICU, and 6 weeks thousands of miles from home, because of gastroschisis.  Expecting #3 2ndtri.gif July 2011! computergeek2.gif www.frugallynatural.org
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#126 of 137 Old 04-20-2009, 11:58 AM
 
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-you can answer a quiz of random questions on their obsession while doing something else and dont even have to think (mine are sonic, ben 10 and dr who)

-you can do your shopping without worrying where the kid is because they wont move an inch

-you can say to the other mum thats come over because their kid said your kid did something... my kid doesnt know how to lie

-you can recite about 20 books cos you have read them a million times

-you have to add an extra 10 mins onto your journey time cos you child has to count and check every police car at the station that you have to walk past

-you laugh at people that say 'oh, youll have to stop him from doing that' i cant even make him put his shoes on ffs

-you dont care how late you are, you are happy you even managed to get there

-people said theres no way you would cope as a single parent to ds and a newborn and you want to rub their noses in it!!!

- your 7 year old wakes you up in the night more than your newborn does

-you dont realise your ds is not using any words but still understand what he is saying

-if one more stranger says that child needs a good slap you will slap the stranger

-your family blame AP for your childs problems

-you child loves the library and will spend all day there..... but checks the same book out everytime

-people think your child has only one set of clothes... they have loads but all exactly the same

- you own all the clothes your child will need for the next few years because you bought it in different sizes because thats all they will wear

i'll think of more later....

my boobs are eeeevil.................eeevil i tells ya....
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#127 of 137 Old 04-23-2009, 09:55 PM
 
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Wow, a lot of these mentioned bring back memories of days passed!

You've become the greatest detective b/c your kid's expressive language hasn't quite caught up to his questioning...so when he asks "why does it do that?" while you are driving and there are about 100 scenarios he could be referencing, you quickly scan all out all windows to clue into what would interest him. Telephone poles? Traffic lights? Ambulance with no light? Someone mowing lawn? AH! Blinking yellow light. Mystery solved, blinking not in vocab...

The looks you get when your 1 yr old and 5 yr old are fighting for the seat in the stroller b/c both are tired of walking...

When you and both ST's have had enough of all the "why" questioning, ds adapts and starts asking "how come?" instead....

Lining up 3 water cups in new fun cups for the 3 kids, so the one will take his miralax without suspecting a thing. And trying to make sure kid #2 doesn't take the wrong cup!
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#128 of 137 Old 05-07-2009, 08:01 PM
 
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Your child asks his 'grandmother' after she returned home from a Dr visit ...
"Did you have fun at the doctor's office?"

So glad we have made that aspect of his life "fun"
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#129 of 137 Old 05-07-2009, 08:57 PM
 
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SN parent here to two lively preschoolers!

- You dress your kids in weird colors or put bells on their shoes so you can find them across the playground.

- Your kids know to get up and come to you if they get a bonk because you don't usually have the energy to go get them. Or they just kiss each other and go on.

- You get in the car and your DD reminds you to wear your special "driving glasses".

- The cats all like your chair the best because the heating pad is on it.

- You encourage your children to ask strangers on the playground to lift them onto the swings because you can't do it.

- Your 2yo can outrun you.

- Your chiropractor tells you that you absolutely MUST NOT lift your 36lb son and you laugh in her face.

- You encourage your 4.5yo to ride in the stroller because you can keep track of her that way.

Erin caffix.gif , Happy wife of Honey Bearguitar.gif , mom of Curly Miss (11/04), Little Mister (10/06), Princess Abi (3/08), and The Bean (9/09) jumpers.gifadoptionheart-1.gif  <>< oh, and I blog.

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#130 of 137 Old 05-08-2009, 02:55 PM
 
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I haven't read the entire thread but as the mother of a 16 1/2 yo child with truly "non specific" Developmental Delays, Disabilities and Psychiatric issues I TOTALLY RELATE!

Here is my newest: When they are drawing blood for the standard checks, you tell the doctor (his pediatrician) that you also want a test run for _______ and she orders it -- no questions asked.

(I had researched and wanted him tested for Prader-Willie Sydrome. It was negative. So, he is still without a "diagnosis" after almost 17 years!)
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#131 of 137 Old 05-09-2009, 06:51 PM
 
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When you worry you are going to burn out the motor on your stand mixer because your SN toddler is obsessed with it and would watch it spin for hours every day if he could.
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#132 of 137 Old 05-09-2009, 07:37 PM
 
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Pukey Lukey is said affectionately by his friends......who came up with it (prek)
You can read the paper and know just when and where to put your hand to catch puke without missing a word
you've memorized the weight/height/age percentile chart

still learning
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#133 of 137 Old 05-26-2009, 08:55 PM
 
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You know which day the hospital cafeteria has the fajita special

You have had more than one doctor ask you if you are a doctor

You have ridden in an ambulance more than twice in one week

Your child has been admitted to the hospital at least four times in one month

You have been in every room in the ER, and call dibs on the good ones

You routinely use the medical equipment to treat your child, because the nurses are taking too long

You read and interpret lab results, and ask the docs to write ’your’ orders...and they do

You hand out instruction sheets for your child, because the MedicAlert bracelets don’t have enough room for every diagnosis

You diagnose random people...correctly

You have to use fingers and toes to count all of the specialists your child sees

You have ever seriously considered wearing t-shirts with the names of malpractice lawyers on them, in order to get better treatment for your child

Other family members must be bleeding, dismembered or comatose in order to receive any sympathy from you

You have been exposed to so many x-rays that you consider radiation a form of birth control

Your immune system is so well developed that it has been known to attack squirrels in the back yard

You own at least three pens with the names of prescription medications on them

Your family stopped talking to you because every time you open your mouth it sounds like a recital from a medical dictionary

You have placed bets on lab results

You’ve spent so many hours sleep-deprived in the ER that you are reduced to muttering things like "it’s just a flesh wound" and "I’ve come for your liver!"
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#134 of 137 Old 05-26-2009, 09:15 PM
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You smile graciously when your daughter gets long sleeved shirts as gifts, even though short sleeved are less of a hassle.

Other kids arms seem abnormally long to you.

Your kid's face looks strange to you without Tender Grips on.
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#135 of 137 Old 06-08-2009, 04:18 PM
 
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I don't have a SN child (well, he's only 2mo so we can't say for sure yet) but I stumbled across this thread...

Reading this has done a few things for me:

- I'll be less likely to judge the parent of the toddler with a bottle or pacifier because I don't know if that child is SN

- I'll also be less likely to judge the parent that appears to be ignoring their screaming child for the same reason.

and I hope this one isn't taken the wrong way...

- If my child turns out to not be SN I'll cherish every moment that much more...even the tough ones.


Thank you for opening my eyes. You are all in my thoughts and prayers.

Kas (24), Helpmeet to Stefan (25), Mom to Franklin Gaudelio 4/15/09, Jonathan Boswell 1/2/11
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#136 of 137 Old 06-11-2009, 11:39 PM
 
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Originally Posted by AFWife View Post
I don't have a SN child (well, he's only 2mo so we can't say for sure yet) but I stumbled across this thread...

Reading this has done a few things for me:

- I'll be less likely to judge the parent of the toddler with a bottle or pacifier because I don't know if that child is SN

- I'll also be less likely to judge the parent that appears to be ignoring their screaming child for the same reason.

and I hope this one isn't taken the wrong way...

- If my child turns out to not be SN I'll cherish every moment that much more...even the tough ones.


Thank you for opening my eyes. You are all in my thoughts and prayers.
: Thanks.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#137 of 137 Old 07-05-2009, 11:49 PM
 
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when sleep is optional at your house
when you ban buttons from your house because they make your SI kid freak out.
when you have to explain that your child is having a sideeffect from a new med and the medical staff says: hey, I didn't know that was a side effect.
When you have to walk your seven year old to the bathroom (2 feet away) because "it's scary by myself".
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