My Child Is More Resilient Than I Realized
I speak for many mothers when I say that receiving my child’s sickle cell diagnosis left me thinking he would be incapacitated. I thought he would be in pain every day, with a poor quality of life and unable to do normal daily activities.
Considering many of my family members live with sickle cell disease, I should have known better, but something about it affecting my son made me fear the worst and lose all sense of reality. Thankfully, life so far has been nothing like I initially imagined.
My son has had his fair share of falls off the sofa, bumping his head on walls, playing a little too rough with his older siblings, and getting hurt or kicking his foot against the wall instead of the ball. Yes, he has gotten hurt on many of these occasions and screamed his lungs out like any other child his age would, but none of these has led to pain or a crisis. I thought situations like those would lead me to the emergency room in the early days.
His siblings have come home from school with colds, coughs, and signs of other infections, but in most cases, he hasn’t caught any of the illnesses, and when he has, he has recovered from them within a few days at most. Once again, I thought every encounter with an infection would have me packing a hospital bag for a few nights’ stay. And yet again, this has never happened — long may it last!
I know sickle cell disease affects children on a spectrum, with some children affected severely, others mildly, others somewhere in between. But I’m almost confident that no matter where on the spectrum they fall, children with sickle cell disease are not as fragile as we think. Their immune systems may be weaker than the average child without sickle cell disease, but they are, in some cases, much stronger than we realize.
They will inevitably be exposed to numerous infections, but not all of them will cause pain or crisis. They can still run around, scream, play with their friends or siblings, and get hurt without many of these activities leading to pain or crisis.
You may have just received your child’s sickle cell diagnosis and be fearing the worst. While I cannot predict your child’s future, it likely will not be as dreadful as you imagine. And that’s not to say that caring for your child won’t be (sometimes) challenging.
Think positively and hope for the best, but don’t be complacent. Following the care guidelines, feeding your child a healthy, nutritious diet, and being the best parent you can be are still paramount to ensuring that they have the best quality of life possible.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell disease.
I absolutely agree with you. SCD is an unpredictable condition and the spectrum is quite wide in terms of how the disease affects different people. In any case, the best gift we can give our kids who suffer from SCD is to stay positive and strong for them. Help them to maintain a positive mental state and uphold them by our faith and prayers. Thank you for encouraging moms who are caring for SCD patients. I found your write up very uplifting,