To be a parent of a child with a chronic illness

To be a parent of a child who is battling a chronic illness….

Is heartbreaking, yet inspirational

is exhausting, yet eye opening

is demanding, yet rewarding

is lonely, yet comforting (we belong to a tribe, with other moms/dads like us and we all rally behind each other)

I just heard from a mom who had to sit in the E.D. a week ago and she complained because it was the first time she’s ever had to do so (her kid is over 10) and she was mad because she sat for hours, he got his stitches then they were sent home. She didn’t feel like it should have taken hours.

Yet, what about the parents who do this day in and day out. We know plenty who have sat in the E.D. for hrs, knowing it was going to result in an admit status. We too have been there. What about the parents who have lives filled with clinic appointments, specialist appointments, battles with insurance companies, PT/OT appointments, School IEP/504 Meetings, etc. What about those of us that know this won’t have an end date, it will be life long.

As Addyson continues to deal with all of this we see her anxiety worsen, we see her fear about the new sports team, new classmates, new teacher. We see her beg for answers for this condition.

We see her put on a brave face to go see other kids who are inpatient. We see her go and do her commitments, even though she can’t do them 100%. We hear her ask about all her other Hopkins friends by name daily. We hear her discuss her medications while playing with her dolls. We hear her talk herself up before going to swim birthday parties.

She puts on a brave face for the world, but this girl is facing big battles. We know this makes some people sad…..it makes us sad too and we hear people say she is brave and that we (and others from our tribe) are brave, but there is no choice and we don’t always feel brave. We feel like each day we are hanging on with a thread. Some days we keep it together and life looks simple, other days we are reorganizing meds, restocking the saline, playing phone tag w/ the hospital staff and crying a lot due to all the added stress.

Just know that we care about everyone and we are trying the best we can to keep it together and to keep up with the every day things.

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