Do you know how it feels to see your child in discomfort and pain from the swelling and know that the medication you were prescribed for her doesn't really help?
Do you know how it feels to watch your child get recurrent fevers during the week that come out of nowhere and can spike at any time without warning or signs of infection?
Do you know how it feels to wrap your child in three towels and a down blanket after a bath to warm her shivering body up because she doesn't regulate or handle temperature changes well?
Do you know how it feels to watch your child have difficulty swallowing food so she uses a drink to help wash it down and even then she winces, so every meal is a struggle to get her to finish?
Do you know how it feels to see your 4 year old be completely comfortable and used to being in doctor's offices, hospitals and labs that exams, ultrasounds, blood work and surgery doesn't phase them?
Do you know how it feels to go to a specialist and basically have to argue and insist that you be taken seriously and that your child's symptoms be taken seriously?
Do you know how it feels to hold your child while they cry and ask what is wrong with them and not be able to give them an answer?
This is my normal.
This is Phoebe's normal.