The Right Cloth

Many times in the last few years, people have told us that they admire us.  While we appreciate that sentiment and understand that it is meant as a big compliment, as a family we are looking for something other than admiration.

First and foremost, we want your empathy, tenderness, and tolerance for our children.  Please do not reject them because they are different.  Do not give up on them or ignore them when you are around them.  Do not retreat from them because they do not have volume control  or a gentle button (yet) or because they might be interested in something no other child you have met has liked or because they may not be able to reciprocate your interaction in that moment.  You could give us no greater gift and no greater joy than to accept, understand and love our children just the way they are.  When others reach out warmly to Rex and Emilia, it brings tears to my eyes every single time.  When others try to find ways to include our kids based on their ability, it fills me with immense gratitude.

by Carrie Lynne Photography

Secondly, as parents we need support, emotionally and socially.  Having developmentally disabled children is very isolating and our own road has become lonelier as the kids struggle forward.  Our schedule is filled with medical and therapy appointments and even when we are at home, we are usually trying to catch up with anything from laundry to medical claims.  It's impossible for us these days to sit for a long conversation or even a full meal, but that doesn't mean that we don't want to be with others.  We want to know what's going on in your life and be a part of it.  We want to have those good talks and real human connections.  Can you circle a playground with us while we chat?  Can you come over for a cup of tea while I unload my dishwasher?  Can you meet us at a therapy session, so we can catch up while the kids do their work?  Please do invite us to birthday parties and play dates and family gatherings.  We may not always be able to attend, but we will certainly make our best effort to come and then leave as still friends.

I recently read or heard a quote that, paraphrased, went something like this: "It's easy to love someone who loves you back, who says thank you, and who reciprocates your loving acts.  But when you are asked to love someone who cannot or will not respond in kind, it will truly show the cloth you are made of as a person."  In some ways what we wish for our children and family right now is to be surrounded by people of that special cloth who make the conscious choice to see our normal not as insanity, burden or struggle, but can appreciate the beauty, humor, tenacity, and blessings in our family and life.  If you are that person, you know where to find us.

Our most difficult task as a friend 

is to offer understanding 

when we don't understand. 

~ Robert Brault