Ren's Ramblings & Writings

Contemplations on things tangible and intangible

Sunday, January 11, 2015

Some Mothers Get Babies With Something More-special needs moms

my response to this beautiful ode to special needs parents at

I don't any longer have that " strength of a draft horse while holding onto the delicacy of a daffodil..." I've become wilted and fragile over years of fatigue (mental, physical, and emotional) dealing with severe depression. Were it just my special needs kids (two of them) that I had to deal with-piece of cake, really. Even during my husband's many deployments... But life throws so much more at you, never-ending. things you have zero power to influence. You can advocate for and protect your kids, but you cannot save the world around you. You cannot even influence whether the pharmacy gets your order right or drops the ball on your refill, whether others around your child act reliably when your child has a seizure and sustains secondary injuries. You cannot influence whether or not the school handles your case wisely when another child bullies your child. You cannot influence whether ER doctors have even basic understanding of your child's condition(s). You cannot influence whether or not a teacher reliably understands your child and interprets your child's behaviors accurately.

Worse than all this... you have no power to influence, over and above your own children, whether or not your sister makes good choices that protect and care for her own children-your nieces/nephews or makes them homeless and endangered-you have no power over whether society takes action on an abused or neglected child or animal around you. You have no power to influence whether or not others around you care for or cause the suffering of people and animals that you care about. You have no power over whether or not your own personal ethics agree with the ethics of your employer, the GOP, or your neighbor. You have no power over whether or not people give animals away for free on Craigslist and allow those pets to end up as bait for fighting rings. You have no power to influence whether or not a company cares humanely for animals that are kept/bred for human consumption. You have no power to influence whether or not someone starves horses, dogs, or babies to the point of extreme suffering.
In the end, you have only the ability to care for, protect, and advocate for your children in the best way you know how. And sometimes we make mistakes. We get angry.. We get tired. We are emotionally exhausted by more than just our childs' needs.
Never-the-less, we keep on trucking. We react like clockwork, predictably, when our child has a seizure, or stops breathing. We deal with the shock of traumas later, out sight of the kids. Sometimes we end up needing help to keep on trucking (help of other moms who understand, dads, doctors, pharmaceuticals, and others in society)-but what is our choice-to lay down and die? We do not have that luxury. We have children who need us for a very long time to come (or a not so long time) and we are not likely to outlive them. So we have to do our best to get thru each day and hope that we can set them up to be cared for or self-sufficient in the future after we are gone... we have to keep our eye on the ball, so to speak, which is enjoying the day to day, as well as just getting thru the day to day of life, when knowing that the future for our special needs kids can be uncertain...

And it is a struggle to maintain some level of optimism some days... do we count on the GOP to care for our special needs kids after we die? Our neighbors? Our alcoholic brother or uninterested sister? Will a capable sibling care for the special needs sibling as adults once we are deceased? The struggles to make our special needs kids as capable as possible to care for themselves on some level in the future takes place today.

Try being the mom with all this on her personal "plate" whose autistic child acts out in public-and everyone around judges you-and every action you take in this situation is judged. every time you see the school's phone number in your caller ID, your heart races, wondering if it's an emergency.  Never mind the future, I'm trying to get thru the moment.... while not losing sight of my child's future.... and some days it feels like a losing battle... though in reality, it isn't-you're just extremely tired, mentally, physically, emotionally...

None of this means you don't love your children every moment; you love them with every breath you or they take.