Kennedy's Village

When Kennedy was first diagnosed with Sickle Cell, people around me were great and full of encouragement. People who knew someone with Sickle Cell gave me all the positive reports of their lives, and people who didn’t know anyone with Sickle Cell researched people and found articles about PhD professionals, nurses, teachers, designers, engineers, entrepreneurs, etc. who fight Sickle Cell Disease.

To help encourage us, people would said things like, “my daughter’s friend has it and she does well in school” or “my cousin has it and she is in college.” And the testimonies continued.

I remember a person who told me about one of their relatives with Sickle Cell. She told me the child’s parent has to take the kids to “a few doctors’ appointments, but that’s it.” They also told me these kids were “just fine,” and put me in contact with their mom.

I gave the mom a call and after she said hello and we got all the polite greetings out of the way, she said, “my aunt tells me she told you my kids are ‘just fine’. Her tone changed to a more serious tone and the warrior mom continued speaking and said that her kids were fine because she works hard to make sure they’re “just fine.” She told me she didn’t want to overwhelm me, but that it’s not just a few doctors’ appointments and it’s not easy. Finally, she gave a gentle laugh and said, “I guess I make it look easy”.

As I chewed on the dose of reality she served me, I swallowed the last bite and told her it’s one thing to do something and another thing to hear about it. Everyone on the outside sees the results but they don’t know the journey. With relief that I was getting it, she exclaimed, “YES! The earlier you know that Shavonn, the better.”

Today, a couple years later, as I’m sitting in my quiet place preparing to get my conqueror ready for yet another doctor’s appointment, I’m reminded of that mom and I can say wholeheartedly that she is right. Conquering ain’t easy.

It feels like every time we go to a doctor’s appointment, we are preparing for another one. And it’s not just the hematologist. As we conquer along in this journey, we see the ophthalmologist, audiologist, radiology, etc. etc. etc. The pathology (blood draw) department knows us on a first name basis. And this doesn’t include the appointments with the primary care physician. By the way, many of these appointments take all day or they are at the worse times of day. And sometimes these departments are so full they have to squeeze you in — Can you come in at blah blah blah time? The “can you” is just them being polite because the next available appointment is months away. If you don’t answer yes quick enough you may get talked to about how important this all is. And of course we know it is important — she is our kid.

Understand she is a whole person and parents have to work to make sure that the whole person is provided for.

I guess some people think this is easier than it is because we look good doing it (lol). But seriously, a day’s worth of work and the pre-work of scheduling the appointments are easier heard about.

Have you ever made homemade garlic sauce? I have. My husband and I love it. I gave some to a friend once and she asked what was in it. I told her fresh garlic cloves, salt, lemon, and canola oil. She said, “oh sounds easy enough.” Nope, it’s not easy. The process of mixing those things has to be done just right. If you add too much of the oil at once, you can ruin the whole thing. Those four ingredients have to go in at the right time and at the right temperature. But as she ate my sauce I knew she didn’t understand. The process isn’t something you can get from a simple explanation. It wasn’t until my friend sent me a picture of oil with garlic floating around in it that I knew she got how difficult it is to make.

Not everyone will have our experiences with chronic illness. Not every husband without paid sick leave will have to hear about the appointments over the phone or after they’re over so he can take care of the whole person I mentioned earlier. Not every sibling will have to be understanding when a parent is missing and every parent won’t have to try to make sure that kid knows they’re also loved.

But what every person can do is know that just because you can’t see it doesn’t mean it’s not real. Just because you’re not experiencing it doesn’t mean it’s not difficult.

Oh, and don’t try to compare one illness to another. They’re all hard, people! Yup, we’ve been told by medical professionals, “it’s not like you have cancer.” Seriously! I’ve talked with people with both illnesses and we agree that given a multiple-choice selection, we’d pick “C. None of the above”.

The beginning is still true, there are PhD professionals, nurses, teachers, designers, engineers, entrepreneurs, etc. with chronic illness. And though it won’t be easy, the sky is the limit for my conquering warrior and the same is true for you and yours. And yes, it’s difficult but just because it’s difficult doesn’t mean it’s impossible.