Can Parents Really Accept Sickle Cell?
Last updated: October 2022
As a parent, have you ever asked yourself if you have accepted sickle cell disease? If so, what did your acceptance process look like?
During Thanksgiving, we sat at the table as a family and my husband asked me to pray before eating. My prayer was short, but I think God got the message before I said "Amen." My only wish for this holiday season is for my little princess to get better.
She has had a pain crisis in her back for months, and she can't seem to get over it. Sometimes I just want to “pull her out” or say “Okay and now it's over”. But unfortunately, it doesn't work that easily.
Can we really accept sickle cell?
Sitting here with my little princess in the hospital I wonder if I'll ever really be able to accept this painful illness.
Over the past period we have been going in and out of the hospital, and I notice more and more that it is quite a tough situation where I have more and more trouble being "positive". And don't get me wrong, I'm a very strong positive mother, I will always do everything I can to give my little princess the very best, but sometimes it's just hard to tell myself that everything will be okay. Because how long will it be before it will be okay? What else needs to be done before it gets right? Why does it take so long? Can I take over the pain of my little princess? What have we overlooked? What triggered her?
Life as a caregiver
Living with sickle cell disease is challenging when there is a pain crisis going on or even if your child has a stroke as a result of sickle cell disease.
Talking about acceptance. Acceptance is so important when caring for a child with sickle cell disease. I am convinced that you can take care of your child best when you really accept the disease. Let me explain why.
In the beginning, when I found out that my child had SS I was so shocked, sad, angry, and disappointed... there were so many mixed emotions that I couldn't focus on sickle cell disease itself at all. Thanks to my close support (my mother, my sister, my grandparents, my niece, and a few more people), I have been able to accept this disease.
The most difficult part
The hardest thing for me was the fact that there was no easy way to heal my child. Or worse, having to accept that your child is in pain and there is nothing you can do to help her. Because let's face it, sometimes the painkillers don't help when they have a crisis. The feeling of powerlessness was the hardest. Because all you want is to see your child playing happily and cheerfully with her peers.
Starting to accept sickle cell
The moment I "accepted" the disease, I started to dive into it, started reading, researching, studying, and talking with fellow warriors and their parents, and specialists and eventually you learn to deal with it healthily. That does not mean that you can no longer be insecure, or that you are sometimes afraid or you don't know what to do. That's all normal. But the fact that you are open to knowing more and more and doing everything you can to make the quality of life for your child as pleasant as possible, is the most important part of acceptance.
Our children are central and in order to give the very best to our children, we must deal with the disease and all the challenges that come with it in a healthy and strong way.
Tips for parents and caregivers
I have some tips for parents who need to care for a child with sickle cell disease.
- Take a moment for yourself now and then.
- Ask for help when you are "stuck".
- Talk to a counselor if you feel you are emotionally struggling to cope with the pain episodes.
- Give your child the opportunity to talk to a counselor or psychologist so that she can also learn to cope with the pain and sickle cell disease.
- Talk to your child about the disease, this is good for both your child and you.
- When your child is in pain, be patient.
- Make the child comfortable and make sure she doesn't feel alone.
Let this be your motto: We are in this TOGETHER!
Acceptance is a big word, but every small step you take in this process is of great importance.
Are you interested in connecting with other sickle cell warriors?