The Weight of Parenting a Medically Fragile Child

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           The Weight of Parenting a Medically Fragile Child

Debating whether to call the paramedics or take him to the E.R. this time…

Heavy.

Being your child’s nurse, without any training and constantly watching, listening for any sound of distress, and jumping up in an instant to suction him or care for a seizure…

Heavy.

Knowing that no one truly understands our life unless they have lived it.

Heavy.

Thinking that if we are authentic with our struggles, then people will say we are “negative thinkers” or everything is “all about us.”

Heavy.

Driving in the car, praying he won’t have a seizure until we get home and then having to pull over to reposition and suction because, of course, he did have one and now needs oxygen.

Heavy.

Suctioning at every stoplight. Checking my mirror to make sure he is breathing.

Heavy.

Dealing with the school district and fighting for my child’s rights and safety…

Heavy.

Hearing my oldest ask why we have to be one of the “rare” families with CDKL5 and that it’s not fair…

Heavy.

Making call after call for medical equipment, dealing with insurance companies, appointments, interviews, social workers, ordering medications, talking with specialists…

Heavy.

Making decisions on treatments, medications, therapies, and life-saving devices without any prior training…

It’s very heavy.   

Wondering if your child will wake up in the morning…

It’s a lead brick kind of heavy.

Going on with life, pushing through the weight of it all, because he is worth all of it.

Heavy.

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