Portrait of an African American Mother and daughter.

 

 

Caring for and then losing someone you love can be devastating, and even though grief and caregiving are frequently companions, you may not know where to begin to express your sadness. In the following interview, Me’Chelle shares her personal journey of caring for and then losing her daughter Kee’Doria who passed following a lifelong battle with Sickle Cell Anemia; a disorder that disrupts the formation of red blood cells. In the interview, Me’Chelle also reflects on the love the two shared, her feelings of grief, and how she honors her daughter’s life and nurtures her legacy.  
Kee’Doria’s Diagnosis: Sickle Cell Anemia
When asked how she learned of Kee’Doria’s diagnosis Me’chelle said that, “Kee’Doria was diagnosed with Sickle Cell Anemia at birth. She had her first pain crisis at 3 months old, which could only be identified by constant, nonstop, heartbreaking screaming and crying for my precious, innocent, little baby girl.” Me’chelle admits, that like many caregivers, neither she nor Kee’Doria’s father were prepared to cope with caring for their daughter’s illness would entail. 
What was life like for Kee’Doria growing up with Sickle Cell Anemia?

Me’Chelle says that, “watching her grow up was difficult.  She wasn’t allowed to participate in many activities and functions because her illness was agitated by so many factors such as weather, climate, temperature, water and countless other things.  Unable to be a carefree kid, she became my little smart genius! Kee’Doria loved reading and researching.  Particularly researching her disease, Sickle Cell Anemia.  Many times, school and holidays were brought to her in a hospital room.  With much hard work and will power, my little genius graduated!  However, due to Sickle Cell’s unpredictability, employment was basically impossible; though she had a strong desire to do so much more than her body and physical abilities would allow.”

Kee’Doria’s Living Legacy: Her Children

At age 19, Kee’Doria gave birth to a set of twins Arian and Ariana.  She again gave birth at age 24 to a son, Dorian. Her babies were the joy of her life.  By this time, Sickle Cell seemed to have taken a vengeance on her body.  She required triple the amount of admissions, blood transfusions and blood exchanges.  There were certainly good days, but her crisis became more frequent and were much more severe. 

Kee’Doria becomes the Founder of the Sickle Cell Unite Support Group

In September 2012, Kee’Doria put all her research to good use and created the Sickle Cell Support Group, “Sickle Cell Unite” via Facebook. In this safe space, Kee’Doria shared her thoughts, feelings and poetry with group members. The group was also a place where group members could support each other. Group members advocated for one another and found commonalities in their shared experience. In addition, to Sickle Cell disease itself, many of the members shared the same heartbreaking reality; including mistreatment by medical staff and being labeled a drug seeker due to the medications needed to provide relief from the painful disorder. Kee’Doria was a fierce advocate, hence she was one of Facebook’s most active advocates for the Sickle Cell Community.
Me’chelle: Kee’Doria’s mother, Caregiver, and Primary Source of Support
Throughout Kee’Doria’s journey, Me’chelle remained by her side, loving, supporting her whenever she was needed. Before her children, Me’chelle spent many restless nights at hospitals, then leaving for work by morning, only to return the same night, for weeks at a time.  After the birth of her children, during Kee’Doria’s monthly admissions to the hospital, Me’chelle ensured that her grandchildren made it to school and daycare. She completed a full day of work, checked in on her, picked her children back up, prepared them for school and daycare the next day only to wake up and restart the routine the very next day.  The older Kee’Doria got, the longer her hospitals stay became. Me’chelle was by her daughter’s side loving, caring, and supporting her as she battled the relentless disease. 

Kee’Doria’s Legacy

On May 2016, at age 28, Kee’Doria passed away due to complications of Sickle Cell.  Me’chelle said

Kee’Doria

that, “losing her that day was the worst day of my life. I lost MY first born, MY fighter, My Kiki.” Me’chelle experiences a sadness that is unlike no other. Yet, she finds some comfort in knowing that Kee’Doria’s legacy will live on through her children and Sickle Cell UniteSupport Group.

Kee’Doria’s Sickle Cell support group now has over 14,000+ members. In fact, Sickle Cell Unitehas become a home and family for many.  Me’chelle shared that, “our family has received countless messages about how they admired her, how she gave them a reason to push forward, how the group saved their sanity, gave them a place to breathe and be themselves. I am honored at what my Little Warrior did for others.”

 

About Sickle Cell Unite: Each One, Teach One, then we all go Out and Reach One
Sickle Cell Uniteis a place where those living with Sickle Cell Anemia can come together and unite with others who share similar life expereinces. Kee’Doria’s motto for Sickle Cell Unite is, “each one, teach one, then we all go out and reach one.” It was her wish that members unite to bring AWARENESS to Sickle Cell Anemia and to fight together to bring a voice to the disease known as “Silent Disease.”

             Please consider joining Sickle Cell Uniteif: 

·         You are a parent of a child who is diagnosed with Sickle Cell Disease. 
·         If you suffer from Sickle Cell Disease (any form).
·         If you are a family member or friend of anyone with Sickle Cell Disease. 
·         If you are a medical care provider (Doctor, Nurse, ETC).
Me’Chelle and Kee’Doria shared a special kind of love. Coping with the loss of her oldest child has not been easy for Me’Chelle. Yet, she finds solace in nurturing her daughter’s legacy and in showering her grandchildren with love. She is okay with expressing her sadness when she is sad, she acknowledges that feelings of grief often come in waves, and understands that she will experience some measure of grief for the rest of her life.
Are you Grieving? Two Resources for Grieving Caregivers

The following are two resources that you may find helpful if you are grieving:

Understanding Grief: A Guide for Grieving Caregivers. When someone you love is nearing the end of life or has already passed, you may experience a heaviness of mind and heart. This grief or sorrow often comes with a muddled mix of emotions including hopelessness, fear, denial, guilt and anger.  Please download the Understanding Grief Guide as a resource to assist you as you work through the heartache and uncertainties of your loss and sorrow.

 

 

 

 

 

Register for the upcoming webinar series. Please join us for the live webinar series titled Understanding Grief. This three-part series webinar will focus on the intense grief both family caregivers and care professionals experience when struggling with the acceptance of someone near and dear passing. The webinar series is sponsored by Right at Home and hosted by Caregiver Support Services. The topic and dates for the series are:
March 24, 2019- Common Feelings Associated with Grief 
March 28, 2019- Understanding Family Dynamics
April 4, 2019- Strategies for Self-Care
Registration is free. We hope that you will join us. Please register today! 

 

 

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Eboni Green, Ph.D., R.N., is a registered nurse, a family caregiver and a co-founder of Caregiver Support Services, a nonprofit offering training and consulting for family and professional caregivers.

 

 

 

 

1 Comment

  1. TrinitysMom on March 13, 2019 at 9:55 pm

    RIP KEEDORIA!!