Written by Michele Westmaas ~ Who is a mom, a wife, and an advocate for people with disabilities.
To outsiders, the lives of children with disabilities can look very bleak
for the children and their families. People wonder how we can cope with
such dreary circumstances. Frankly, there are days when we wonder how we
Recently, a friend came upon such a day. She's known since birth that her
nearly 2-year-old daughter is profoundly deaf. But the other day, final MRI
results revealed that she has no auditory nerves -- crushing any hopes of a
cochlear implant or other kind of hearing assistance. My friend felt
sideswiped by grief as she suddenly realized how tightly she'd been holding
on to the hope of some intervention to bring her daughter sound.
Thus began a profound conversation about hope and grief, expectations and
trust. I used to think that hope would get us through tough times. But now
I think hope may be a dangerous place to hang your hat.
Consider my friend's daughter. Her hearing is the same as it's always been.
The only thing that changed is her parents' awareness of what that is. Each
time we get bad news about our children's condition, nothing has really
changed - just our knowledge of it. Our knowing or not knowing usually will
not stop what is to be. The grief is not about a new condition or
situation; it is about our lost hopes.
When hopes are really expectations of how things should and will be, we are
setting ourselves up for grief when those expectations are not met. We have
no control over how things will be. The future will unfold as it is meant
to - regardless of our "shoulds", expectations, and hopes.
So what do we do with our hope? We use hope as a compass to direct our path
and give substance to our vision. But we temper precarious hope with
gratitude and trust. Trust that whatever comes will be just as it must be.
Trust that we will endure any trial that comes our way. Trust that for
everything that appears bad, there is goodness on the underside. Gratitude
for that good -- for the new understandings and insights that can be found
under every obstacle and tragedy in our path. Gratitude for the wonderful
gift that is our child.
When we find ourselves weary and stooped under the weight of our worries,
when our instinct is to hold tightly to hope with eyes clenched shut and a
white-knuckled grip, our despair can be lifted with a combination of trust
and gratitude. Open your eyes, soften your grip, trust, allow, and be
thankful for what is.
Contact Michele by email at firstname.lastname@example.org.
I thought this was such a wonderful piece, and exactly how I view our life with Emma Sage.......With ~ open eyes, soft grip.....trust and knowing she is exactly who she is supposed to be and what a marvelous gift that is!
I hope you enjoyed this essay as much as I did.