The Journey of a Mother of a Sickle Cell Warrior
My name is Andressa Hunsel Ambrose. I am the mother of Miracle, a sweet little girl of 9 years old and I want to share my journey with you through this platform. I will work with other mothers and young adults from different countries to ensure that there is enough "reading material" when it comes to parenting, insecurities, and challenges that we face as parents and children with sickle cell.
As a mother, I am working 24/7 to prevent my princess from having a pain crisis.
And yet that sometimes does not seem enough. Do you recognize this? A sense of insecurity, fear, failure? A feeling where you wonder what else you should do to make life more pleasant and bearable for your child.
A trip to the hospital
I can still remember being in the hospital with my daughter during COVID-19 and all I wanted to do was take over her pain. Taking the pain out of her body. She was so tired, physically and emotionally exhausted, and you could tell she could not take it anymore.
It was a 3-month period where she constantly had to go to the ER, be hospitalized, then go home, and then go back to the hospital. The continuous pain, trying new medications, and yet it never ended.
Supporting our loved ones
It not only exhausted my child but especially myself as a mother. Sometimes you want to cry out in frustration and powerlessness. But you cannot because you MUST be strong for your child. At least that is how it feels. But nothing is less true.
That day I cried with my daughter. She was in her hospital bed and I was sitting next to her bed. Miracle was quite shocked about this and I explained to her that I am worried and do not know how to deal with this. She was silent... Looking at me and said "Mommy, don't cry ... I'm going to get better". And then we started crying together again.
Holding onto the strength
Moments like this are so valuable. Valuable, because despite the pain, your child still has the strength to say, "I'm going to get better." I admire her every time. Knowing that her little body is going through a process of excruciating pain, and there is nothing I can do but sit next to her, and lie down and hug her.
You are not alone
As a mother, I, therefore, want to pass this on. When your child is in pain, give comfort, give hugs, give love, be patient, and above all show understanding. Do not try to be strong all the time but allow yourself to also breathe out and show your emotions. So that you go through this journey together, and certainly not alone.
Can you identify with this?
What are your hot weather triggers? (choose all that apply)