Monday, July 6, 2015

Playing the hand you are dealt

I have two wonderful, absolutely normal children and I have four grandchildren: two girls and two boys.  The last one was born with a rare genetic disorder that will affect him for the rest of his life.  It is serious.

I read a lot of blogs and articles by other families with special needs children.  Most of them show some encounter with someone "normal" who unwittingly acts in an unsympathetic manner toward the affected family.  Some point out the "blessing" these kids are to the family.  Others plead for understanding that most of their lives are just as "normal" as unaffected families.  At the heart of all of them is a family in pain that is coping as well as they can.

My daughter is dealing with a life-changing child. He is medically fragile.  Common illnesses are life-threatening.  He requires round-the-clock feedings.  It is exhausting.

We all have to play the hand we are dealt.  I do not believe some god is sending defective children to families because it will be a blessing.  I do not believe a child with issues is any less or any more a family member, or any more or less deserving of love and attention, than any other child.  Life gives us challenges and my daughter and grandson face significant ones.  With love and support, they will meet these challenges and be the best people they can be.

There will be people who do not understand, who think my daughter is picky or unreasonable.  There will be those who think my grandson should outgrow his problem.  His disorder involves an inability to process most fatty acids, which severely affects his diet and his ability to expend energy. People are funny about food.  They feel defensive about it. They hate picky eaters. For most kids, a hot dog and fries are a treat; for my grandson it is slow death.  We will all just have to live with this and all it involves.

Strangers will not understand.  People will try to feed him things he should not have thinking it can't be that bad for him. He will want to eat those things and during his childhood will not understand why he cannot have them.  My daughter will never cease to worry about him. I will never cease to worry about her.  This is our life now.

My grandson is a super-cute little guy and we all love him dearly.  We would have loved him had he been born without this disorder.  It makes no difference. We are up to this.  We have to be.  It does not matter to me if strangers don't understand.  They have their own hands to play.  Perhaps that woman who seemed uncaring has a husband with cancer at home, or elderly parents she can't afford to care for.  I don't know what others are dealing with any more than they know what my grandson has or what it means.

We should be charitable to all.  No matter what you have to deal with, act like the person you just met has twice that on his or her plate.  For they may.  For me, I am happy to love all my grandchildren, relieve my daughter a few times a week, and carry on.  I don't need to change anyone's behavior but my own.

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