Alex
I remember the first words from our neonatologist in the NICU: “Your child has dysmorphic features.” After a completely normal, full-term pregnancy, I was in a state of shock as my little baby was carted off for test after MRI after test and no one had any answers. Laying on his belly, he looked up at me — breathing tubes in his nose — with pain in his eyes. He struggled to feed and sometimes would take an hour and a half to consume a couple ounces through a slow drip bottle. We spent the next few years seeing various specialists each month until he finally received a diagnosis.
At six years old, my son weighs about the same as my two-year-old. He still cannot sit independently and requires care like an infant — feeds 7x/day, requires us to change his diapers, carry him up and down stairs, transfer him in and out of the car, try to interpret his nonverbal communications/needs, and wake up in the middle of the night. Sometimes I wonder what his future will be like; how long he will live; and what will happen to him after I die.
I listen to the stories of other parents who struggle each and every day. Sleeping by the side of their child each night who is on oxygen and heart monitors. Listening to the cries and screams of their child who is in pain and they do not know why. Dropping everything in an instant to go back to the hospital again. Watching their child seize constantly and helplessly trying different medicines to ease their symptoms. Leaving their careers to be full-time providers and having nightmares about what will happen to their children when no one is there to care for them. Struggling with the fragmented, broken, and bureaucratic system of endless providers, insurance companies, vendors, organizations, and schools to obtain help. And then there are the children who fall between the cracks — helpless and frail — because their parents may be struggling with their own personal life challenges.
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