Very good advice..I remember when Sarah got diagnosed and I was so scared and looking at her like she was from another planet for awhile thinking she was going to do something I wasnt prepared for...grow a third eye or something.
Then I read a post someone wrote about when getting the diagnoses remember the child you have is the same baby you loved yesterday and nothing has changed ..only your perspective of them has....I kept that in mind most times and tried not to look for that third eye.
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 will cope.
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.
Michele Westmaas is a mom, a wife, and an advocate for people with
disabilities.
Contact Michele by email at momonamission@verizon.net
Not sure but I always feel that hope is what keeps me going, keeps me fighting. If I had no hope I would lose the fight. If it turns out that I was wrong then so be it. I will morn the day I realize I was wrong. But for now I will hold HOPE close to my heart. My eyes will never be shut with hope just the opposite, my are wide open with hope. It's what I've got.