My beautiful son Elias exists in the looking glass world. The deeper he in in that world, the more withdrawn he is. Things are not quite what they seem, lights and sounds frighten him and you're never sure which ones they'll be. Certain textures use to create a gagging response even when only touched by his hands. Things that seem comforting to him seem too intense to us. His world is reversed. Most of us exist on the other side and to us his world seems strange.
I find myself navigating between these two worlds, trying to help others reach him and understand him. The moments he is spinning happily, going up and down stairs or playing with doors makes these moment obvious. The explanations are unending and they now come automatically as we try to get through the day. It is a busy labor of both heart and mind.
Occasionally I feel that ever so slight pause at the peak of the pendulum and time seems to pause on one side of the looking glass or the other, these are the times I tend to feel the greatest pain as a parent. I felt it a great deal on our recent vacation. While at a museum Kent was off playing with the other children while I had found some glass doors for a Eli to amuse himself. Pulling them open and stepping back to watch them gradually swing into place, he grins in shear atticipation and with a burst of giggling at the moment of closure. His laugh as always evokes my answering smile at his deep pleasure.
It was then I chose to look through that window. A passing class of children gazed with undisguised curiosity. Beyond them I saw my family playing happily and they felt like a world away. I wasn't there sharing in the moment, I wondered if they'd become so use to their parents being separate in all our outside activities that they didn't miss me. Did they miss Eli, did they wish he could be there to join in their games? I. missed them, I missed feeling we were altogether a family sharing in our experiences of the world. Instead I felt like I was trapped on the other side, looking through touched by the heart but untouched in body wondering when we might experiencing and sharing on a connected whole family. I mourned his diagnosis all over again.
Then there are other times when we all seem to be in front of the looking glass. Even Eli is prepared to be there, reaching through to touch his siblings on the other side. These are the times I feel some of my greatest joys. When we exchange raspberries on each other's bellies, when we 'blub bulb' with our fingers on our lips and end with a resounding "Tada!" That would evoke a round of laughter. The best ones are where he reaches out in his own like recently on a hike when Eli took his older sister's hand. Her surprise and delight had stopped her in her tracks to loudly declare ," Look mama, Eli loves me!!" He responded with his typical side head tilt into her arm as if to say, "'Of course I do!"
So if you ever wonder why it is I can swing from joy to pain in a single moment it is because of these two worlds I bridge. The funny thing that I've come to understand is that we all have our own little looking glass worlds. They are not as obvious as Eli's and not always as isolating but the connections that are made at the border point are the ones that help us bear through the loneliness. More than that we are not so different from each other but our realities are, the struggle is to not let our realities define us or others.
As cute as he is now, one day he will be a man and I will not be always there to bridge those worlds. Will he come to the looking glass and find anyone there? Will he reach through and find that connection that gives his life meaning and worth? Will it be only a few or will we have built him a community?
Will you come to the mirror? Will you cross that bridge for him. It becomes easier each time you go and as you understand him you will see him for the beautiful individual he is. I love him with all my heart and the more you take this journey with me, the more my mother heart can rest assured in the future - a future of greater understanding, compassion and grace. This is the prayer of every special needs parent.
It was then I chose to look through that window. A passing class of children gazed with undisguised curiosity. Beyond them I saw my family playing happily and they felt like a world away. I wasn't there sharing in the moment, I wondered if they'd become so use to their parents being separate in all our outside activities that they didn't miss me. Did they miss Eli, did they wish he could be there to join in their games? I. missed them, I missed feeling we were altogether a family sharing in our experiences of the world. Instead I felt like I was trapped on the other side, looking through touched by the heart but untouched in body wondering when we might experiencing and sharing on a connected whole family. I mourned his diagnosis all over again.
Then there are other times when we all seem to be in front of the looking glass. Even Eli is prepared to be there, reaching through to touch his siblings on the other side. These are the times I feel some of my greatest joys. When we exchange raspberries on each other's bellies, when we 'blub bulb' with our fingers on our lips and end with a resounding "Tada!" That would evoke a round of laughter. The best ones are where he reaches out in his own like recently on a hike when Eli took his older sister's hand. Her surprise and delight had stopped her in her tracks to loudly declare ," Look mama, Eli loves me!!" He responded with his typical side head tilt into her arm as if to say, "'Of course I do!"
So if you ever wonder why it is I can swing from joy to pain in a single moment it is because of these two worlds I bridge. The funny thing that I've come to understand is that we all have our own little looking glass worlds. They are not as obvious as Eli's and not always as isolating but the connections that are made at the border point are the ones that help us bear through the loneliness. More than that we are not so different from each other but our realities are, the struggle is to not let our realities define us or others.
As cute as he is now, one day he will be a man and I will not be always there to bridge those worlds. Will he come to the looking glass and find anyone there? Will he reach through and find that connection that gives his life meaning and worth? Will it be only a few or will we have built him a community?
Will you come to the mirror? Will you cross that bridge for him. It becomes easier each time you go and as you understand him you will see him for the beautiful individual he is. I love him with all my heart and the more you take this journey with me, the more my mother heart can rest assured in the future - a future of greater understanding, compassion and grace. This is the prayer of every special needs parent.
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