An Open Letter to the Special Needs Moms of COVID-19

Dear Special Needs Momma,

I see you.

I see you making it work as you assume the roles of mommy, teacher, and therapist. I see you worrying about your child’s mental health, since they can’t always verbally tell you how they feel. I see you waiting even longer for that visit with the specialist you’ve already waited months to get. I see you putting off getting diagnoses because you fear a clinic visit would lead to an ICU stay. I see you weighing out risks and benefits of ER trips, and making plans for what constitutes a trip to the emergency room and what doesn’t. I see you mentally working through emergency scenarios in case an ambulance can’t get to you in time. 

I see you taking extra precautions on top of your already-thorough routine for disinfecting and distancing from others. I see you worrying that your medical supplies may not come in next month, and coming up with back up plans since you can’t stockpile your medications and supplies. I see you worrying that you can’t order diapers for you older child who isn’t yet potty trained.

I see you assuming the role of nurse, since respite may be unavailable or not worth the risk of outsiders coming in. I see you administering medications, running tube feeds, suctioning, and checking vitals — meticulously keeping records by hand. I see you summon super human strength to carry you child up and down the stairs, in and out of the tub, and in and out of their mobility devices. 

I see you sighing as you watch those who didn’t get their flu shot last year because “they never got sick” suddenly become advocates for herd mentality and staying home for this virus. I see you wondering if the world finally recognizes the gaps in accessibility that have been so obvious to your and your family. I see you shed tears as others claim this to be a hoax, ignoring safety protocols, because you know the health of your child, and the world, is only as strong as the weakest link. 

I see you lying in bed, muscles throbbing at the end of they day, as you assume the role of full time caregiver for your growing, and still dependent child. I see you pushing through despite the exhaustion because of a love so deep, and so great, others can only imagine what it feels like. 

I see you.

I am you. 

You are doing your best, and that is more than enough. 

Sincerely, 

Your Fellow Special Needs Momma

Avatar
Cristina Perez is a firm believer that while life is complicated, that is what makes it beautiful. A born and raised New Orleanian and fierce disability advocate, Cristina is a singer, activist, writer and mother to three-year-old “Oskie” — her son with a rare disease. With a mission of giving a louder voice to mothers of children with disabilities and rare diseases, Cristina creates original music inspired by untraditional motherhood, positivity and inclusivity for all. Her latest single, “Lessons I’ve Learned” was released in 2019, as an uplifting anthem for mothers to turn to when things get tough – a motivation to remain strong despite what life throws at you. Currently splitting her time between New Orleans and Washington, D.C., Cristina also authors a popular blog called “It’s Not Too Complicated,” where she breaks down the trials and tribulations of medically complex motherhood, marriage and everyday life while using her voice to promote rare disease awareness.

LEAVE A REPLY

Please enter your comment!
Please enter your name here