Congenital Harmony

The other day I heard the comment, “Your daughter is not acute enough” from someone in the medical field. Lets just break this down. Acute is something that is relatively a short term situation of less than a year.  On the other hand chronic is long term, life sustaining.

When hearing this having a child with multiple chronic diagnoses was a slap in the face, that my child is unworthy of their services because I have kept my daughter safe and healthy through the challenges of 2020. Many have no idea the drama and mental anguish raising a special needs child is. The abundance of specialists, doctors, patience is overwhelming.

I am thankful for my child’s chronic issues are only acutely exacerbated, but does that mean she doesn’t deserve support as she is not ‘sick enough’? How about the family, do they not deserve the reprieve knowing that their child is safe while receiving specialized services? Or is this, all these specialties no able to be to my child’s avail because some 20 something who doesn’t have kids, working in a cubicle have any empathy for the specialized needs on a daily, often hourly situation special needs children require.

These questions are situations which many of us face. They are valid and you are not alone. Our children deserve unity and support. But so do we. Until recently my 7 year old and I have been doing all of her services by myself. I have just recently been receiving help and not having my daughter go to a traditional daycare, with continuous “we can’t handle her any more” situations.

During 2020, I have been full time employee with a new set up while adding to my responsibilities – day care provider, teacher, PT, OT, SLP, Dietitian, ABA, RN, MD, Ambulance, and mom. I know I am not the only one who needs a vacation from life after this past year. So the doors of opportunities getting slammed in my face when I know my child qualifies for and deserves is hear breaking for many reason.

The exhaustion felt by families with special needs children is all consuming. This exhaustion is mental, physical, emotional, and relational – isolation is real. Please be mindful of the added parental environmental defense mechanisms, they too are not acute, but chronic.

congenital-harmony.com/acutevschronic