Sometimes I Forget...

As the special needs mom of several young adults, my life is not at all what I imagined it would be at 52 years old.  Due to infertility, we started our family later, and due to disability we are actively parenting longer.  As our kids mature, the differences in our life become more pronounced, and yet oddly, with the passing of time, it has become so normal that it is hard even for me to understand what is actually unusual.  It all seems "normal", that is, until I am brought up short by some new awareness...

Sometimes I forget...

That most parents with kids who are 19 or 20 are not still having to make sure they are dressed appropriately.  They don't have to regularly remind them about hygiene issues from hair brushing to wiping their mouth at the dinner table.

Sometimes I forget...

That most parents haven't had to plan their annual calendars around surgeries year after year, or anticipate other medical needs.  I can't imagine having a defining medical moment be merely a broken arm, or that time your child had the chicken pox.  

Sometimes I forget...

That most parents have not had to take over their children's entire education because there was not another single option that would keep their child's hearts intact and their hope alive.  For the majority of parents, homeschooling is never on the radar, and for the 4% of kids who are homeschooled in the US, it is very often a choice made, not an "option of last resort".

Sometimes I forget...

That most parents are not sitting down with their young adult children and having to take over handling their finances, because they can't recall spending their money or track it, and because if it isn't tangible in their hands it is like it is Monopoly money.  Then, they look at their bank statement, and they are shocked, scared, and despondent, fearing the reality that they will likely never have the ability to fully handle their personal finances without regular assistance.

Sometimes I forget...

That most parents are not trying to help their children re-learn and re-learn certain tasks, over and over again.  That they don't have their children stare back at them blankly, saying, "I really don't ever remember that mom, I believe you, but I don't remember it at all."

Sometimes I forget...

That most parents don't have to sit before their child who silently stares at them as the clock hands move past five minutes, ten minutes, and much longer because they are in a brain loop and aphasia has kicked in, and words simply do.not.come.out.  Patiently, achingly, you wait, and still...nothing.  Wheels are turning, but words can not be accessed, and then FINALLY they come, it is with an unusual deliberateness that is not your child's typical presentation at all.

Sometimes I forget...

That most parents haven't had to hear the horrific stories of trauma, fear,  intentional neglect, and much more that your child endured.  They haven't held large quaking bodies in their arms as memories surface, as old hurts are given new life by some seemingly innocuous event.  

Sometimes I forget...

That most parents aren't terror-stricken many a night as the gnawing concern chews at them when they think of how impossible it will be to provide financially for not one, not two, but three kids they love dearly who may never be able to fully support themselves, and never qualify in America for disability payments (but they sure do in Canada).  How will they survive?  Can we take out more life insurance?  Will they ever earn a real paycheck?

Sometimes I forget...

That most parents don't turn to one another on one of the very rare evenings they are out by themselves on a drive an hour from home and one says, "You know, this may seem totally stupid, but whenever we are out by ourselves driving somewhere of any distance, I find myself thinking about what would happen to our kids if we were in a car accident and both of us died."  And then your spouse quietly responds, "No, it isn't stupid at all.  I always think the very same thing."  And you realize you may feel this way the rest of your life, for some of your children will never, ever live without assistance regardless of chronological age, and you say a little prayer that very moment and ask God to please keep you alive as long as possible so your other children, who will eventually step in, have the chance to mature and start their lives solidly before something happens to you.  And you think twice before you leave the house together with your spouse and everyone else is home.

But there is more, thank goodness, there is so much more.

Sometimes I remember...

That most parents are not trusted to be as intimate a confidante as I have been blessed to be.  Our sons and daughters trust me with a depth that can only be borne out of walking through hell and back together, hand in hand, never leaving one another's side.

Sometimes I remember...

That most parents have never witnessed their child ever-so-slowly come to life and soften around the edges.  Like a long ignored perennial whose yellowed leaves droop, there is a blossoming that occurs in a child who once belonged to no one, and now is precious to someone.  The bud that eventually flowers is sturdier for having withstood the weathering of its early life, and they turn their face eagerly toward the sun, basking in the light that is offered.  There is a sacredness in this experience that can not be easily put into words.

Sometimes I remember...

That most parents, like a perfect artisan dough, are not stretched and kneaded in the same ways we have been.  Some parents may not be able to as easily handle being punched down and deflated, only to rise again as a newer, tougher, more durable version of themselves, ready to face the scorching heat of the oven where their outer crust turns a golden brown and protects the soft, tender inner layers.  We are heartier, we are firmer,  we are leavened.

Sometimes I remember...

That most parents may begin their "third act" as their kids reach the age ours have, they can reinvent themselves, look forward to a life that is more peaceful, more independent, more carefree.  There is no more taxi driving and no more constant correcting.  But we get to live into a "third act" that might be far better preparation for our later years, for it will teach us through practical experience and real-life application what "interdependence" in healthy relationships looks and feels like, and we will better be able to accept help from others when the time comes that it is necessary for us.

Sometimes I remember...

That I once thought my life would look very differently at this stage.  I never imagined the grace that would be offered me daily by my beloved ones as I, too, try and navigate a combined world of ability and disability.  I never imagined a love so overwhelming and powerful that would be shown to me so openly and appreciatively every single day.  I never imagined the gratification of relationships that allow for joint ventures and holding hands as we dive into the deep end and must sink or swim...together...as adults.

Oh, sometimes I forget that our "normal" really isn't what others would view as normal.  

Aren't I fortunate?