Your child’s health care is important. Finding the right care is not always easy, especially when it comes to finding tuberous sclerosis complex care.
Tuberous sclerosis complex (TSC) is a rare genetic multi-system disorder that is typically apparent shortly after birth. The disorder can cause a wide range of potential signs and symptoms and is associated with the formation of benign (non-cancerous) tumors in various organ systems of the body. The skin, brain, eyes, heart, kidneys and lungs are frequently affected.
Finding appropriate care is important to your child’s health and development. Appropriate and affordable care should be every child’s right, and the tuberous sclerosis clinic offers some helpful resources on:
- Treating the Whole Person
- Family-Centered Care
- Leading Research Means Advanced Treatments
As I read more about TSC, I’m thinking: the seizures, the causes, the diagnosis, the treatment. All of it. How would I cope? I hate “calling in sick” when my child falls ill. Knowing that my child has “the bug” and has thrown up in the night, but that I have to go to work is heart-wrenching.
And of course, all the Murphy’s Laws of parenting a sick child add to the stress: Your child will inadvertently catch “the bug” when everyone who usually helps you out is busy, and you have no sick time left.
The equation is nerve-wracking to say the least.
Sick child + no one to help + no sick days left = One BIG sh*tshow!
I hate to admit that I may or may not have given Tylenol to my feverish sick boy so I could send him to school long enough to make an important meeting or deadline. It may or may not have been my proudest moment in my parenthood experiences. But, what else can parents do?
A child’s surprise illness can push a working parent to the point of panic—my child can’t go to school. I’ve got a jam-packed calendar that I can’t rearrange. So, now what?
I dwell on all these thoughts, and then I gain much needed perspective. And yes, it is true: Your child will get sick at the most inconvenient time possible. A child with “a bug” will have the day when health and “normalcy” will return.
But, what about a parent raising and loving a child with TSC?
Perspective, folks. Much needed perspective. Parents of children who have chronic conditions, I salute and support you!
