Why Doesn't She Just...?

[Guest guest]

Why Doesn't She Just…?

Written

by

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 she won a hard fight against

breast cancer. 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, touertte's, down syndrome, schizophrenia, fetal

alcohol syndrome — 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 ones who know — the only ones who know how to calm her child down, how to

give the injections, 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 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.

--

Johanna

Mattern

http://www.caringbridge.org/visit/jackhenry

The best exercise for the human

heart is reaching down to lift someone else up.

~ Tim Russert