A Sickler’s Advice

Living with Sickle Cell Anaemia is like being the parent of a very temperamental baby. This baby cries when she’s hot, when she’s cold, when she’s tired, and sometimes she cries for no perceivable reason at all!

This month, I had the opportunity to be a volunteer mentor with the Children’s Hospital of Philadelphia. I participated in a 2-day program called REACH for college, where we try to prepare students with chronic diseases and their parents, for life in university. Personally, I think we’re preparing the parents more so than their children.

Anyway, for the program we (the mentors) were asked to think about a way to describe our condition briefly. The quote above is what I came up with. In coming up with that quote, there were many things I wanted to convey to the parents. Many things that I did not have the time to convey in the few hours we were together. It is those many things, that I would like to convey in this article.

You see SCD (Sickle Cell Disease) is a hereditary disease. Meaning that the afflicted have to start dealing with it from a very young age i.e the second they’re born, but I phrase it that way to draw a parallel. Take what I said earlier (about being a parent), and what I said a moment ago (at a very young age), and apply it to an ordinary child – and what you get is a teenage parent.

This parallel allows us to draw many comparisons. We have a child who has to take care of a baby for the rest of her life. She can no longer do the things her friends do as a result, AND she has a whole bunch of new things she has to do to keep the baby healthy & happy. It’s a lot of responsibility that she was not prepared for, and every one of her actions now has much heavier consequences.

Replace that baby with SCD and you have the perfect description of a teenage sickler. Except, this teenage sickler has been a teenage parent all her life. For some reason, her baby remains eternally young while she, grows older. Yet even though she has aged, she is not yet an adult. She is but an experienced teenage parent.

So in thinking about sending your precious teenager (with SCD) off to college, every parent ought to realise that they are sending off an experienced teenage parent. This person already knows most of what they need to know about managing their disease because they’ve been doing it for a while. They will still make mistakes (as people do) and mix-up their priorities (as teenagers do), and they might even do some very scandalous things (as college students do), but all of it will likely be within the limits they have learnt from their experience and upbringing.

They are still adolescents, so they will still need your support and loose supervision. But at least as far as the disease is concerned, they can be trusted to do the right thing. Of course what constitutes “loose supervision” will vary from child to child, but it shouldn’t be used as an excuse to avoid letting go.

Therefore as the parent of a college sickler, what should be of utmost importance is making sure that they have access to the medical resources and emotional support they need. As opposed to keeping tabs on their every move. Trust me, you’ll get used to it after a while and your kid will thank you for it.

Thanks Mom & Dad! You’ve both been wonderful parents to a sickler like me.

Damola Mabogunje

Software Engineer by day, Blogger, Poet and Author, by night, I spend my days writing everything from the convex comma, to highly complex code.

4 thoughts on “A Sickler’s Advice

  1. Hi Damola,

    I think this is awesome — I really enjoyed reading it. I think you’re right when you say that the parents are a more tangible audience (their apprehension is much more palpable). I think the benefit to the teens is a little more subtle, but still very real. It might be something they remember months later.
    We loved having you participate!

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