We all live and move within circles. We have our circle of family. We have circles of friends and of co-workers. And we have circles for special interests and
special needs. Our circles are made up
of kindred spirits. We trust the members
inside. They are our safety net when we are vulnerable. But the reality is that our circles are
constantly evolving. People move in and out
of our circles depending on the situations in our lives.
When Emily was born, my circle of friends changed. I
struggled with the grief that came with having a child with a disability. I had
lost my own identity, the mom I used to be before Emily’s birth. I had lost the
child I dreamed that Emily would be. I focused on becoming the mom my family
needed me to be. I was abruptly thrown
into a circle with other parents who also had children with disabilities. Those
people touched our lives with their words and examples. They dispelled my
feelings of aloneness. I took support from those in this circle who were there
before me and later, I gave support to those who came after me.
The circles I knew before Emily was born, changed. Some people slowly
drifted out because we no longer shared the same priorities. And others, I unknowingly pushed away when I
put expectations on them. Those expectations put undue pressure on my friends
and set me up for self-initiating disappointment. Eventually I learned that
just as I get to choose how, and with whom, I walk my journey, they get to
choose how, and with whom, they walk their journey. If others choose to continue
to walk with me, I am blessed. And if they choose another path, then I am
blessed for the time they did walk with me.
My circles changed again when Emily died. I desperately did not want to lose the support
within the parent’s circle. As I faced
the challenges of finding a new normal, I clung to the familiarity of those
relationships. But the focus of raising Emily had necessitated my being in the
circle, and when that focus was gone, the need for the circle was gone. Gradually it became obvious that I no longer
belonged there. For the other parents, I, minus Emily, was an all-too-real
reminder of the fragility of life. For me, seeing the intact families was a
painful reminder of all that I had lost.
It was fully two years after Emily died that I finally sent a note to
the Down Syndrome Association of St. Louis and asked them to take me off the
mailing list for their monthly newsletter. That notes was the final event that severed
my connection from the circle of parents of children with disabilities.
I became part of a different circle – one for parents
whose children have died. Now grief was
my daily focus, and it threatened to consume me. As my journey took me through the swamp of
loss, I experienced many “secondary losses” which heaped grief upon grief. I
felt like I would drown in it. I
surrounded myself with people who had traveled this road before me. When I was lost, they gave me direction. When I
was weak, I relied on their strength.
When I was confused, I used their wisdom. When I despised myself, I soaked in their
love. And in turn, I gave that support
to those who came behind me.
It’s now been nine years since Emily died. Now my
question is, “How long do I stay in this circle?” The circle where I expect to be sad every day,
where I struggle to allow myself to feel joy, where I feel guilty when I am
happy, where I disapprove of myself for wanting to move on, and where I never
feel that I have done enough penance for my imagined failings as a mother.
I have been tempted to succumb to the black holes of anger, despair, and
self-loathing, but now I am ready to step out of that circle. I am
not looking to forget Emily, or to
forget the people who were so significant in our lives. Her presence was so very significant! It was hard and it was so wonderfully simple. It was great and it was awful.
So, I don’t want
your pity and I don’t want your sympathy. I trust God to set my feet on the paths that I should go,
and to set the right people in those paths to help me along the way. I trust
that He knows all about it, and that He has it all in control. I take comfort
that this world is not the end of life. I now belong to a circle in which my focus is
on life instead of on death, a circle in which I celebrate life and embrace
both the blessings and cursings that I am given.
