Still Waiting

I’ve been waiting to post on my blog until I hear from the doctors in Seattle.  Well I am still sitting here waiting!  The surgery team on Jackson’s case should have met yesterday and we should be hearing from someone soon.  The wait is killing me, I am not a patient person.  To top it off, Jackson has just been so grouchy and obstinate lately.  One day he is beautiful – happy, laughing, content.  The next day he is screaming and yelling, pushing me away every chance he gets, unhappy about everything.  If he doesn’t get what he wants he throws a tantrum.  I believe we are in the terrible two’s.  Leave it to Jackson to at least accomplish that milestone on time!  I think it is highly unfair to have a child with disabilities that seems to make all the crappy milestones (teething, tantrums) right on time.  A bit of ironic humor seems to guide my life these days!

I recently read a book called The Child Who Never Grew by Pearl S. Buck.  Buck was a very popular writer in the 1930’s who won the Pulitzer Prize and the Nobel Prize for Literature.  She had a daughter who was mentally disabled.  Buck tried for a few years to raise her daughter on her own but eventually placed her daughter in an institution.  She was very conflicted about this.  She desperately wanted to raise her daughter and care for her, but societal views and pressure were different in her day.  For many years, I would say until the 1980’s or so, if you had a child who had some kind of physical or mental disability the thing to do was to put them in some kind of institution where they could receive the kind of care they needed.  That was the idea anyway.  What Buck discovered was that some of those institutions were nothing more than a shelter.  While there was a degree of embarrassment and shame to having a child who was institutionalized, Buck refused to feel this.  She found a wonderful home for her daughter, visited her regularly, and then dedicated her life to getting special needs children adopted.  Then in 1950 she wrote The Child Who Never Grew.  Buck felt her and her daughter’s story needed to be heard, no matter how difficult it was to come forward with it.  60 years later I read their story and found myself understanding a fellow mother’s love and decisions.  While I can’t fathom having to put Jackson in some kind of institutional home, I don’t know what life has in store for me.  Maybe someday I will no longer be able to care for him and that may be my only choice.  Perhaps it might even be a better one for Jackson.  But for now I am thankful that there is a better understanding from society and doctors about the ability to raise special children in their homes.  Whether we parents of special needs children chose to keep our children in our homes or put them in the care of others, it is our personal decision.  It should be respected by others.  Here is a little part of the book that touched me.  I hope it touches you.

From The Child Who Never Grew by Pearl S. Buck:

Parents may find comfort, I say, in knowing that their children are not useless, but that their lives, limited as they are, are of great potential value to the human race.  We learn as much from sorrow as from joy, as much from illness as from health, from handicap as from advantage – and indeed perhaps more.  Not out of fullness has the human soul always reached its highest, but often out of deprivation.  This not to say that sorrow is better than happiness, illness than health, poverty than richness.  Had I been given the choice, I would a thousand times over have chosen to have my child sound and whole, a normal woman today, living a woman’s life.  I miss eternally the person she cannot be.  I am not resigned and never will be.  Resignation is something still and dead, an inactive acceptance that bears no fruit.  On the contrary, I rebel against the unknown fate that fell upon her somewhere and stopped her growth.  Such things ought not to be, and because it happened to me and because I know what this sorrow is I devote myself and my child to the work of doing all we can to prevent such suffering for others.