Why doesn’t she just…
See her?
That mom over there?
Why doesn’t she just…
…Leave her baby in the nursery at church?
…Give it a rest with the hand sanitizer?
…Breastfeed?
Or that one-right over there-why doesn’t she just…
…Make her child behave?
…Stay home?
…Get a sitter?
What about that one-why doesn’t she just...
…Stop trying to put her child in with the “normal” kids?
Because she cannot-because she knows the nursery won’t pay close enough attention to her baby’s allergies, because her baby has reflux so severe it would break your heart if you really knew, because her baby has a skin condition and people say and think the cruelest things when they get a close look, because she’s the only one that knows how to care for her baby’s trach, g-tube, medical condition-she and her family are the only ones who are able.
Because she knows it’s worth the risk of offending someone by offering a bottle of hand sanitizer. Because she knows that her baby is only one well-meant cuddle away from another three-month stay in the NICU.
Because breastfeeding isn’t always as simple as it sounds. Because hours and hours of sleepless nights and stressful tears while her child’s life hung in the balance have ravaged her body to the point that it has nothing more it can give-no matter how much she wishes it were otherwise. Because the dream of nursing her own child died while her baby struggled to survive with the help of ventilators, trachs, feeding tubes. Because her child cannot or will not eat, leaving her to plan for future therapy, the next surgery, the next specialist appointment-while she searches for answers, diagnoses, treatments.
Because bad behavior isn’t always synonymous with bad parenting or spoiled children. Because she’s doing the best job possible in a challenging set of circumstances. Because her child has autism, asperger’s, tourette’s, down syndrome, schizophrenia-and after a full day of doctor and therapy appointments the stop at the grocery store just wasn’t optional-much as she wishes that it was. Because you just happen to be seeing her on one of the very worst days of her life.
Because she’s already stayed home for months. Because she deserves fresh air as much as the next person. Because her child does too. Because she’s working hard to give her child as many normal experiences as possible. Because others need to learn to be compassionate.
Because the possibility of a sitter isn’t a reality for everyone. Because she and her family are the only one’s who know how to calm her child down, how to give the medications, how to get her child to eat, what to do if her child seizes, how to vent her child’s g-tube, how to run her child’s feeding pump, how to flush her child’s port, how to change her child’s trach, how to assist her child to the bathroom, how to tell when it’s time to take her child to the ER or just time for a nap, she and her family are the only ones who know how to keep her child safe.
Because her child deserves a little bit of “normal” in this life too. Because her child, like every child deserves the best that can be given to them. Because she sees the child when others see a disability. Because her child matters.
Because she’s right to teach her child to try, to aspire, to dream.
Written by “Michelle” another special needs parent.
