Sickle Cell Warriors

Articles

 Breaking News

Seek and You Shall Find the Support You Need!

Seek and You Shall Find the Support You Need!

 How do you survive when your entire support system is gone? Read ElleJenae’s quest to rebuild her support system, and provide care for her family, and daughter with sickle cell. 

Z4 and Granny

Since the week I found out my baby had SCD my mom became my biggest supporter.  Many thought it would have been my husband but it was my mom and her alone.  Sometimes a couple won’t know how strong their marriage is until the trials and tribulations start.  He couldn’t handle it.  He couldn’t handle her crying. He couldn’t handle not being able to help her. He couldn’t handle staying at the hospital or taking her to the doctor for so many checkups. He couldn’t handle my mom helping me instead of him.  His anger increased the more she was sick.  He would curse at Z4 and tell her to be quiet and at that moment, I knew without a doubt my marriage was over. 

Once separated my mom and I made plans to move in together with her section 8 voucher.  I landed a job at a high school and enrolled back into college.  Until we found a place, my mom decided to come stay with me during the week and allow me to go to school. When Z4 was sick, my mom would stay in the hospital while I was at work and then I would switch with her in the evenings. The days I had school, my mom would stay the all day and night.  Regular days she would leave the hospital and go to my house to make sure the girls were okay.  Unfortunately, in October 2012, my mom was diagnosed with stage 4 cancer and by November 2012 she passed away. 

Today I am rebuilding my support system from ground up. For the most part I’ve been doing it alone but it started to take a toll on my new job.  Near the end of October 2013 thru December 20, 2013– Z4 was constant in and out of the hospital consistently.  So I decided to open my mouth, seek and hopefully find help by doing the following

  • Send out a mass text to all my friends for help

·         Send out a facebook.com message to all my family members who lived in Chicago or near

·         Called the family members on her dad’s side what help could they offer, if any

·         Called my oldest daughter and asked her for help when she is in town not working

·         Call my daughter’s grown step sister and ask for help

My message was the same to all of them; I need physical help!  I cannot do this alone and any amount of time you could give us during Z4’s crisis would help.  I needed weekday coverage and someone to help with my girls all week the nights I would at the hospital.  I was willing to adjust the schedule to fit with whatever they could give me.  I didn’t get a mass response but I did get a positive response from 8 people.  Out of the 8 people, only 7 could help me during the week days.  My oldest daughter came to the hospital and stayed 2 whole days for me.  Two cousins did one day each and a sister from my church did one day.  And the gentleman I’ve been dating for 6 months volunteered to manage my children at home and cooking for them when I wasn’t home.   Another cousin and my transportation lady both volunteered to keep Z2 and Z3 on the weekends while I stayed at the hospital. 

Z1 and Z4 Sleeping

I was overwhelmed with joy by the response and wasn’t focused on how many responded but focused on the help offered.  In return, I did my best to offer abundant gratitude to let them know I am here to help them too with whatever.  My support system is still not solid– but it is there.  I am grateful that today someone is always there to lend a hand and for that I am forever grateful.

Related posts:

About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior.
I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can.
I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

Related Articles

4 Comments

  1. IHATESC
    IHATESC February 11, 18:31

    You and your girls are in my prayers. My parents both come from HUGE families. None of my family have ever been there for us during the years to help in any way. I even had an aunt refuse to babysit me because she was afraid I’d get sick. My Mom & Dad have always been my support system and they’ve done it all alone from day 1. I can only imagine your frustrations. Stay strong and know that God has his hands on you and your girls through it all.

  2. kona coffee
    kona coffee March 31, 01:53

    I blog often and I truly appreciate your content. This great article has really peaked my interest.

    I’m going to book mark your website and keep checking for new details
    about once a week. I subscribed to your RSS feed too.

  3. Elle Jenae
    Elle Jenae Author April 06, 09:47

    @Kona Coffee. Thank you so much for your support & reading my articles of what’s on my heart! Awesome comment!

  4. Elle Jenae
    Elle Jenae Author April 06, 09:51

    @IHATESC. I too will you & your family in my prayers! Thank you for your comment! Your encouragement is so appreciated!

Write a Comment

Donate

Support awareness & education for SCD

Announcements

Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here: http://sicklecellwarriors.com/classes/
* = required field
Interested in local meetups?




powered by MailChimp!

Join us on Facebook!

Archives

Tweets!

have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss