Dot Does Her Thang

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I always talk about “dodging bullets” when it comes to Dot’s health. 

Yes, she has a serious life threatening medical condition that will require meds and specialist visits for life. 

However, when you have a child with a rare disease, you ✨must✨ learn how to be thankful for what you’ve got - or in this case, what she doesn’t have. 

When I talk about the silver lining to having a child with a rare disease and that “things could always be worse”, it’s not because I can imagine all of these scary things that could possibly be worse. 

It’s because I was told at different times, that these worse things were suspected. 

Tests proved over time that these things were not valid concerns for us any longer, but when a new disease or condition is presented to you, you do what most every other parent does - which is educate yourself on the matter. 

Doctors will tell you not to Google these things because they don’t want to upset you. As a parent, part of my job is to understand the possible risks or complications or issues that are involved when it comes to possible diagnosis for my child. 

Was I supposed to just bury my head in the sand until I had concrete results either way? Of course not! 

They ran genetic testing on her for a couple of these and three or four weeks, sometimes more time goes by, before you have those test results in. 

There’s no possible way that I was not going to educate myself and learn as much as I could about this possible condition that my child had. 

What a ridiculous request to tell a parent that their child may possibly have this very rare condition but to not educate themselves about it. 

Educate yourself, so you have SOME idea of what your child’s future / or lack there of, looks like. It’s your right as a parent and caregiver of your medically complex & fragile child.