The Lonely Road

A fellow adoptive mother of children with special needs, Adeye Salem of No Greater Joy Mom, posted this entry to her blog yesterday and I want to share it with you.

Why?

Because it hits home.  Because we, too, have experienced the silent hurt of social isolation that began and slowly expanded as we grew our family, accepting and loving children with significant special needs.

Because we, too, used to have a lively group of friends with whom we celebrated special occasions, vacationed, and maintained ongoing contact.  Because this group largely faded away when the going got tough.

Because it's easier to stay at home than to go out and yet we want to go out together as a family and so we do, no matter the challenges.  Because respite is a miracle and so hard to get.  Because there've been three date nights in almost five years.

Because our life is not as scary if you come inside as it may look from the outside. Because our kids and our family need a village.

I agree with Adeye completely.  The most challenging aspect of having a family that includes individuals with physical, developmental and emotional special needs has nothing to do with doctor's appointments, therapy sessions, home modifications, IEP meetings, diaper changes, special diets, lots of broken objects or the juggling of schedules and complex needs. What's most painful and difficult to handle is the social isolation, the loss of togetherness opportunities, friendships and even of relatives.  It's the unspoken heartbreak of families like ours who are, for one reason or another, suddenly on the fringe.  It's our secret sorrow because we know we made choices - which we would make again - and we must live with their consequences, however unforeseen or devastating they might be.

To those of you who are sticking it out with the five of us or who have newly welcomed us into your life since 2011, thank you will never be enough.