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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend.  Standing at 14,115 feet, it’s one of Colorado’s highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful” after admiring the view from the summit.  It’s a harrowing drive up the mountain; there aren’t guardrails for a large portion of the road and, until recently, the road wasn’t even paved all the way to the top.  It’s absolutely stunning, but remote.

Knowing the kids would get hungry along the way, we stopped and bought a loaf of bread, peanut butter and jelly, water bottles and some snacks.  Pulling in for the last bathroom break before we entered Pikes Peak Highway, I ran the front end of the car up on a concrete barrier that was in front of a parking space.  Nathan poked fun at me, I shrugged it off and we drove the nineteen miles up to the top, where we were greeted with snow and a rainbow.  We climbed into the car and began on the winding road back down.

About halfway down, the park staff stops each car and does a brake check to make sure you aren’t overheating the brakes.  “Ma’am?  I need you to pull over,” the park ranger said. “Your brakes are fine, but you are dragging something from your front end.”  I pulled the car into the adjacent parking lot and we got out to inspect.  Sure enough, part of the undercarriage from my front bumper was hanging.  Nathan was all set to tie it up to get it off the ground so we could continue on, but it was then we realized we were absolutely unprepared.  We had no tools in the car, no cable ties, no string, no bungee cords, not even a screwdriver.  I walked into the gift shop looking for something…anything, but found nothing but stereotypical souvenirs.  I came back out to a frustrated husband, lying on the ground as the children whined, “We’re hungry!”  (Hey – at least I had that covered; I had stopped for food!)  A nice lady offered us dental floss, but it wasn’t strong enough.  A pair of motorcyclists revved their engines as they came to a stop by the minivan and asked if we needed some help.  Before I could even finish explaining what happened, they were joking around with me, and pulling supplies out of their saddlebags.  The kids found this development hilarious – here we were in a mini-van loaded down with what we thought important (snacks and factor), but we hadn’t taken into account what other emergencies might pop up.  We were able to get the undercarriage secured and continue our journey back down the mountain, lucky that our knights on shiny Harleys had saved us.

In the last week, we’ve seen the unpredictability of severe weather and my first thought after hearing such news is always, “I hope we don’t have any families with bleeding disorders in that area.”  We never know what scenarios might play out in our lives – it could be a natural disaster, it could be a service interruption, it could be anything.

Individuals and families managing a bleeding disorder already know that life is pretty good at throwing us curve balls.  Planning ahead might not stop certain events from happening, but it sure can have a positive impact on the outcome and will allow you to use your energy to stay focused on the solution, not the problem. With preparation and a plan, you can know that when the time comes your actions will be purposeful and productive.

Helpful Hints

  • It is recommended that every person with a bleeding disorder have a “to go” bag ready at all times.  Read more on tips and items to include in an Emergency “to go” bag.
  • Questions to ask yourself and family:
    • Do you know how to reach your medical team if the usual phone numbers, email addresses, etc. aren’t working?
    • Do you have sufficient factor and supplies on hand? (The American Red Cross recommends having at least a 72 hour supply for emergencies).
    • Do you have the other necessary items you need for you and your family to “shelter in place” for a few days?
  • As we approach the summer season that often sees tornadoes, hurricanes and wildfires, take a moment to use this informative, bleeding disorders specific guide from the CDC to review how prepared you are.
  • Click here to learn more information and tips from HFA’s Emergency Preparedness page.

Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service.  She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001.  Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year.  Sonji, her husband Nathan, and three children:  Nora (11), Thomas (9), and Natalie (7), currently reside in Colorado.

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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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