Infusing Love: You Know You're a Hemo Mom When…

Everyone finds coping mechanisms to get through stressful situations. Moms quite often bear the brunt of the stress as caregivers, and many moms of children with bleeding disorders find humor, and especially sarcastic humor, to be a helpful way to deal with the day-to-day issues of hemophilia or other bleeding disorders. They see the irony in the bumps and bruises and can’t help but laugh at the crazy things hemo moms say and think to themselves. Humor has long been seen as a complimentary and beneficial medicine for those faced with chronic illness; HFA’s “Infusing Love” mom bloggers agree, and compiled a list of those moments that are as funny as they are true.
This “You Know You’re a Hemo Mom When ____” list is dedicated to all moms in the bleeding disorders community. If you have one to add to this list, please leave it in the comments below.

BUMPS, BLEEDS & BRUISES

• you can spot a slight limp a mile away
• you can identify the varying stages of bruising and can tell how old one is by color and size
• you admire veins of friends, family and complete strangers and let them know it
• you can tell by the way he/she walks that he’s/she’s bleeding before they do
• you assess any injury by the number of boxes it will take to get it to stop
• you start assessing a bleed on another kid/adult who does NOT have a bleeding disorder
• when there is even blood on your checkbook
• you could never have imagined that you could stick your son with a butterfly and give him his factor

LAUNDRY DAY, AKA: NOSE & MOUTH BLEEDS

• you brag to everyone when your child manages his first nosebleed totally on his own
• you are looking for something in your purse and you pull out nose pinchers
• you have a red washcloth/towel handy in the car or in your child’s backpack
• you’ve learned how hard it can be to get blood stains out of clothes or car seats
• you have learned not to freak out at the site of what looks like a crime scene on a pillow case when your child wakes up with dried blood everywhere
• you have learned that a little peroxide, dishwashing liquid, and a soak in cold water for several hours will make that blood stain smaller and smaller to where it eventually becomes unnoticed
• your sheets and pillowcases are black
• your child has permanent marker circles around his bruises to monitor size and shape
• your son eats red jello for lunch in 2nd grade and the school staff thinks he is bleeding from his gum

NEED SUPPLIES?

• you carry a tourniquet in your purse
• your carry-on bag is factor and medical supplies — NOT clothes
• the contents of your refrigerator total more than what your house and its contents are worth
• when the ER bag is packed for the grab and go…  or  you  can “pack” for a trip or ride in less than 5 minutes
• you always have a Sharpie marker and tape measure in your purse, and in every drawer in the house
• a syringe or saline flush in your purse is as normal as lipstick
• you understand the power of a character on a Band-Aid and how much of a difference it can make
• Band-Aids are another endless supply item that can be found in your purse, wallet, pockets, glove box, drawers, and every room in the house!
• you see something and think it would make a great ice pack
• the bottom half of your refrigerator is full of factor
• you go away for the weekend and pack more factor supplies than clothes
• Grandma has factor in her butter compartment in the fridge instead of butter
• you think to stop at the grocery store frozen food isle for a quick ice pack in a pinch

SCHOOL DAZE

• your child has a permanent pass to the school nurse and the front office waves you through without going through the normal check-in procedures
• your child has their name on an icepack in the nurses office
• the school nurse calls to see if you have any extra ice packs you’d like to donate because the ones you have work so well
• you count the number of days your child completes a full day of school
• you have a hemo packet made up for the beginning of school every year for the new teacher
• your kid has a cut bleed all over their homework paper and you have to make a copy on your home printer to send to school so you don’t freak the teacher out
• you honestly contemplate wrapping your child in bubble wrap before sending them out on the athletic field
• your school morning questions include: do you have your homework, lunch, permission forms and did you do your prophy?

HEADED TO THE HOSPITAL

• you are on a first name basis with every nurse at the hospital
• you get the employee discount in the hospital cafeteria
• you have to remind people that you are not a nurse and have no medical training outside of hemophilia
• you walk into an ER and can educate the staff
• you have an amazing confidence and empowerment when you are telling nurses and physicians what hemophilia is, the tests that need to be run, the rules for sticking or who will access the port, and what IV antibiotic is used when waiting for port infection results
• you can interpret blood tests and CBC results
• you end up drawing up your son’s factor in the ER because its quicker than watching ER staff trying to work it out
• you know the fastest route to the ER during all traffic conditions

ME, AN ADVOCATE?!

• you have learned the art of advocacy and standing up for your child, even if you were once reserved and quiet
• you learn how to lobby when you have never had an interest in politics and law
• you can translate insurance terms and Explanation of Benefits (EOB)
• you learn how to fight for your choice in providers and manufacturers
• you become an active voice and member in your local bleeding disorder member organization
• you make it a priority to attend bleeding disorder events in your state and across the country when you can
• you advise that parent when they comment on their kid’s unusual bruising/bleeding to get a simple PTT test from their primary doctor

LIFE WITH A BLEEDING DISORDER

• you get excited when someone says “factor” only to realize  they’re talking about “The X Factor” and it has nothing to do with hemophilia
• you measure days between infusions, not days of the week
• you have family contests about who has the biggest bruise
• you get through a tough infusion morning and get them off to school before you have a good cry
• your adult son thanks you for all the needles, all the adventures, all the support you  give him
• it’s not uncommon to randomly cry because you hate watching them suffer, even if there hasn’t been an issue in days or weeks
• you play “what’s that shape?” with bruises (much like laying in the grass looking at clouds) you can put together a wheelchair with one hand (and blindfolded)
• it seems easier to get routine things done in crisis mode than when there’s plenty of time
• it’s only after your “other” friends eyes glaze over do you realize the you and the hemo moms have been talking in “hemo speak”
• you have an official health insurance representative that no longer asks for your ID numbers or what you are calling about…they just apologize for processing the claim incorrectly and get it fixed
• you can properly spell hemophilia
• you find ways to reach out to other hemo moms that can relate to or understand what it’s like to find strength when you are tired and frustrated
• you are able to give tremendous support without even realizing it just because you listen and have been there
• you have become part of a new and extended family after a bleeding disorder diagnosis
• you find caps to factor mediction and saline mixed in with the kid toys
• you never leave home without your first aid kit, red wash cloth and meds
• you find your kids using a syringe like a water gun
• at the park with friends, they always ask you for a bandaid or ice pack or opinion on how bad a bruise really is
• you become the master of padded creativity with pool noodles and foam
• your son can’t find his belt and uses a tourniquet for a belt
• you decorate your cutout cookies with icing squeezed from a giant syringe
• people complain about the high cost of their oral medications, you laugh hysterically
• you save all the good snacks for “factor day” rewards
• your puppy’s mouth is bleeding from losing his puppy teeth, and you immediately start wondering what his factor level is
• you have one piece of luggage designated solely for factor and supplies for all members of the family when traveling
• you & your son decorate the pumpkin with lids from water & factor bottles