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Embracing reality and overcoming fear…

Written by Faustina Mensah.

It is very hard to pick up from where Vanessa’s Dad ended his blog because he said everything that must be said and heard. I will talk less about crisis because Vanessa is doing a great job sharing her lived experiences. Therefore, I decided to share some of my experiences that can be helpful to all caregivers, especially young moms like myself who are still figuring out how to navigate supporting their child with Sickle Cell Anemia (SCA).

“I will be a lactor (lawyer and doctor), and a princess”, yes, that is my 8-year old baby girl, Asempa, my boss lady (BL) and Madam! She responds when I call her madam, she has brought us so much happiness and oh yes, she is a handful too and has Sickle Cell Anemia (SS genotype).

We found out BL was SS, a few days after her 2nd birthday, the details, I will reserve for another time. It took me over a year to embrace our new reality and to date, I still have my episodes of pain and guilt anytime she has a crisis. It has been 6years and counting and I feel I became a better caregiver to my baby after I embraced our reality and refused to give in to my fears, anger, and guilt. I was able to do this after I learned more about SCA, paid close attention to signs of stress, and practiced positivity towards the condition.

After the baptism of recurring crisis episodes, I quickly realized that supporting BL goes beyond having the financial resources to rush her to the hospital when a crisis is imminent. Instead, be able to read the signs when they are lurking was the first step to reducing her crisis, so I read more about the condition and asked questions when in doubt. SCA, according to the experts is largely about strength management and knowing what stresses the patient out.  As a mom of a child with SS, my most challenging experience with BL has been the ability to effectively manage her strength and stress. It took us a while to see her as a partner in achieving this goal, and we learned it the hard way that we had to believe her and be responsive whenever she complained of pain or discomfort. Countless times BL would complain about pain, but we felt it was just an excuse to stay home and not go to school, 9 out of 10 times there was some infection lurking.

On another front, I stopped playing superwoman and allowed every member of the family to be involved in taking care of BL especially during a crisis; once I did this, providing support became less overwhelming for me. During recovery times, for example, BL’s big brother is always available to play his catalyst role as a joker for his sister to keep her happy or encourage her to finish her meal. Although it took me a while, I found value and overcame bitterness through positive associations with people who understood my predicaments. With this, I drew inspiration from Madam Marian, who has 2 older children with SS and is the most positive woman I have encountered. She is always available to encourage me and share her coping strategies that I found helpful.  

I can go on, but in summary, keep your SS child happy, do not take their crisis for granted because the pain they experience is not only excruciating but also life-threatening – this is pain that one cannot sleep through, pain that has the potential to shut their bodies down! As a Christian, I am keeping my faith alive that God will heal my baby girl, but in the meantime, I pray that there will be more medical breakthroughs around a cure for SS. That notwithstanding, be cheerful, remember that you radiate the hope, faith and strength they need to embrace their reality. Do not get lost moping about the illness; enjoy your gift of parenthood.

Finally, I entreat every reader to consider everything Vanessa shares through this blog especially when we must make that judgment call about childbearing or parenting or supporting caregivers who have relations with SCA.

21 Comments

  • Reply
    M.M Chumbow
    May 18, 2020 at 6:36 pm

    As usual, a very informative piece with so much for everyone to learn. Through the weekly articles, I’m learning a lot about SCA and how other parents are handling tough situations in their parenting. May God give me the grace to be half as strong as you, Faustie and May He continuously protect BL and your beautiful family ❤️

    • Reply
      vnsmgn
      May 19, 2020 at 1:22 am

      Thank you!!

    • Reply
      Faustie
      May 20, 2020 at 1:17 am

      Awwww thank you MM! You are an inspiration to all moms too ♥️. Amen to your prayers too and yes, you’re a strong beautiful maama too! May God continue to bless you too

  • Reply
    Kwadwo Aikins
    May 19, 2020 at 12:17 am

    Wow! I can’t believe I am tearing after reading this piece….. Ma’am Faustina was my teacher and a life-long friend. I didn’t really know this story. Very inspiring! BL will surely be a lactor!

    Thank God there are mothers like you!

    • Reply
      vnsmgn
      May 19, 2020 at 1:21 am

      Such kind words!Thank you!She really is amazing!

      • Reply
        Faustie
        May 20, 2020 at 1:20 am

        Thanks buddy!

      • Reply
        Faustie
        May 20, 2020 at 1:21 am

        Thanks Dr. Vee!

    • Reply
      Faustie
      May 20, 2020 at 1:18 am

      Thanks son!

  • Reply
    John Asmah
    May 19, 2020 at 11:01 am

    Fausty you are always an inspiration.

    • Reply
      Faustie
      May 20, 2020 at 1:20 am

      Thanks buddy!

  • Reply
    Juliette
    May 19, 2020 at 2:26 pm

    Sweetheart, you’re still the super woman. You are an overcomer.

    • Reply
      Faustie
      May 20, 2020 at 1:19 am

      Amen sissy! God bless you.

  • Reply
    Faustie
    May 20, 2020 at 1:18 am

    Awwww thank you MM! You are an inspiration to all moms too ♥️. Amen to your prayers too and yes, you’re a strong beautiful maama too! May God continue to bless you too

  • Reply
    Kim
    May 20, 2020 at 3:01 am

    Thank you for sharing your hard earned truth: learn the triggers, accept help, and listen to your kid! These apply to more than SS

    • Reply
      vnsmgn
      May 28, 2020 at 1:20 am

      Thank you!

  • Reply
    Fatou Drammeh
    May 22, 2020 at 12:35 am

    Wow! Very inspirational❤️. You are a great mom darling.

    • Reply
      vnsmgn
      May 28, 2020 at 1:20 am

      She definitely is! Thank you!

  • Reply
    Moses APPIAH
    May 22, 2020 at 11:26 pm

    What an awesome read, I know BL will do well by God’s grace. What a story of strength and care for a little one with SCA. Faustie, Yahweh bless you for sharing.

    • Reply
      vnsmgn
      May 28, 2020 at 1:21 am

      Thank you!

  • Reply
    ปั้มไลค์
    June 1, 2020 at 6:14 am

    Like!! I blog quite often and I genuinely thank you for your information. The article has truly peaked my interest.

    • Reply
      vnsmgn
      June 11, 2020 at 11:29 pm

      You are welcome. Thank you for reading.

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