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

Oprah Winfrey has been quoted, “I always say moms have the toughest job in the world.”  Everybody knows Oprah is right more often than not.

What would the job description for a mom with a child of a bleeding disorder look like?  I think maybe it would be something along these lines:

Job Title:
  • Mama
  • Mom
  • Mommy
  • Mother
Alternate Titles:
  • Advocate
  • Art Director
  • Bodyguard/Safety Inspector/Lifeguard
  • CEO
  • Cheerleader
  • Chef/Nutritionist
  • Daycare Provider
  • Doctor/Nurse
  • Finance Manager
  • Hair Stylist & Wardrobe Stylist
  • Housekeeper
  • Insurance Specialist
  • Judge
  • Laundry Operator*
    (skills in blood removal particularly helpful)
  • Personal Assistant
  • Physical Therapist
  • Researcher
  • Social Worker/Psychologist
  • Taxi Driver
  • Teacher
  • Toy Repairman
Department/Group: Family Services
Location: Work at Home Travel Required:
  • Must be willing to drive children to multiple appointments for the next 18 years.  Provide your own vehicle, gas and insurance.
  • Some overnight travel required to camps, sports tournaments, clinic visits.
  • Courier duties as assigned (often at the last minute).

      *Travel expenses not reimbursed

Position Type: Full time
*Expect extensive overtime
Previous Experience & Salary Range: Entry level acceptable; on-the-job training continually offered. Salary: No monetary compensation
Advancement Opportunities: Grandmother (which hopefully will come far, far into the future) Benefits:
  • Smiles without reason
  • Hugs and hand holding
  • Artwork and innumerable craft projects
  • Hearing, “I love you, Mommy”
Vacation Time: You must plan, coordinate and execute entire family vacation time. Extensive pre-planning involved as you should research closest medical facility, arrange for medication supply and delivery. 2nd Sunday each May designated as “Mother’s Day”
Physical Requirements:
  • Know how and when to bite your tongue
  • Ability to juggle multiple items (and children) with only two hands
  • Must have Jedi-like reflexes to save child(ren) from danger
  • Ability to carry your own personal belongings as well as those of child(ren)
  • Thrive under periods of sleep deprivation and exhaustion
Job Description
Long term team player needed for challenging permanent work in chaotic environment.
Role and Responsibilities:

  • Primary caregiver for children aged 0 – 18. Expect to fall in a deep unconditional love with child(ren) and be prepared to do anything for child(ren).
  • Be a playmate and disciplinarian to child(ren).  Serve as chief counselor and advisor.  In later years, you must learn how to balance these roles without mortifying the child(ren) into inexcusable embarrassment.
  • Honest and open communication with child(ren).  Teach them how to be self-independent and a self-advocate.
  • Worrier-in-chief.  Plan ahead for the worst, but hope for the best.
  • Identify bleeds and respond and treat appropriately.
  • Be a warrior for child(ren) and fight for everything they need at school, home, and in medical settings.

Preferred Skills:

(Not required, but helpful nonetheless):

 We may have the toughest job in the world, but we are rewarded with our children and our friendships with one another.  Happy Mother’s Day to the most over-qualified group of women I’ve ever known!

_________________________________

*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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