Being his mom means unplanned trips to the emergency department on a Saturday night because his fever spiked, signaling the first sign of another infection.
Being his mom means hospital stays, specialist appointments and new medications.
Being his mom means sleeping in hospital chairs listening to beeping machines all night but being grateful.
Being his mom means planning our next doctor’s appointment instead of a trip to the pool.
Being his mom means knowing more medical terminology than anyone else without having worked in the medical field.
Being his mom means frequent calls to the doctor because of another health concern, even though I just called two nights ago with a different concern.
Being his mom means knowing more than most healthcare providers about his rare condition than they do and having to explain it to them when seeing a new doctor.
Being his mom means learning about more health conditions than I ever thought I’d have to.
But being his mom also means we celebrate every milestone, no matter how small.
Being his mom also means understanding how it feels to overcome a medical hurdle after I’ve watched him fight so bravely.
Being his mom means being thankful for all the little things in life that others take for granted.
Being his mom means fighting and winning every battle right along with him.
Being a rare disease mom is something I never envisioned when I pictured what motherhood would be like, but now that I’m on this journey, I know this is what I was meant to do.
Being his mom means being his advocate and when necessary, his voice.
Randi is a mother of two boys. Her youngest has a rare, complex birth defect called Bladder Exstrophy. Follow their journey at Elias The Brave on Facebook.
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