How Can I Support My Child With Sickle Cell?
In my childhood days, anytime I had crises or got sick, my mum would be so emotional. She would hold my hand and say, “I’m so sorry you have to go through this. We didn’t know." Heavy tears would flow freely from her eyes, and she always tried so hard to help.
It is devastating as a parent to watch your child go through pain, and there’s nothing you can do about it.
After mum died, I made a promise to myself to take all the available measures so that I would avoid having a child with sickle cell disease (SCD). There were many times I could see the guilt she felt because she felt she failed to protect me.
Blessed with a daughter
I confidently say that this guided my decisions when it came to choosing a partner. Today, I am blessed with an amazing daughter (AS) and proud of myself that I could protect her from the stress of SCD in my own small way.
Childhood for me was not so fun. I was bullied, my parents didn’t have a clue, and I couldn’t open up. Parenting a child with Sickle Cell involves a lot of calculations, timing, focus, and strategy.
Tips for parenting a child with sickle cell
Here are a few tips to guide you:
- Be Attentive. Pay keen attention to things people in your circle say to your child. Everyone is a suspect when it comes to verbal abusing and bullying a child with SCD. From my experience, the people closest to you are the abusers.
- Protect and support your child. Know their triggers and try your best to help him/her avoid them.
- Try to never remind them of their health condition. They know. Most times, we just want to feel like everyone else and have a taste of what it feels like. Mostly to see if we are missing something or it’s not a big deal. Try to give them that. If a crisis occurs, stay by their side and help them through the pain.
- Be involved. Find ways to get involved in your child’s medical routine. Join your child to take routine medications. Folic acid especially is very vital in the lives of SCD patients. However, this becomes difficult because it’s an everyday routine.
To make your child feel better, you can make it compulsory for the entire family to take folic acid every day. This, in turn encourages your child to take it every day as it is visible to him/her that you’re in this together.
- Provide physical support. Physical support goes beyond providing a shoulder to lean on, medications, health care, and staying by the sickbed.
Grateful for the people in my life
I want to appreciate the few loved ones I have who do not make me feel responsible for my illness. The few ones who are always there, even if those crises could have been avoided.
Be your child's best friend
As a parent, your support is the most important need of your child. Especially when they are facing a challenge like SCD. Be your child’s best friend. Sickle cell comes with a lot of prejudices from the outside, even from close relatives.
Try to create the space and room for your child to lean on you all the time. Be that pillar that never bends when it comes to your children (living with SCD). If you rebuke your child when the whole world seems to be against them, they may begin to see reasons not to exist. No one wants to live in a world where they feel unwanted. Be that person who assures them they are enough and needed no matter how tough it gets. Give them a reason to keep moving.
Take small steps
Also remember to take care of yourself so you can be fit and healthy enough, to be there for your children. They need you.
Do you consider yourself an advocate for sickle cell?