I used to read blogs and find links on the internet after Oli was born about children with special needs. More specifically I looked for those words describing BLIND children with special needs. Blind. They had to be totally and completely blind or I couldn’t relate. They couldn’t be JUST blind either. They had to have other disabilities. Other delays, or I couldn’t relate. The children couldn’t be too much older, they couldn’t live in another country, they couldn’t be able to walk or crawl… or I couldn’t relate.
Looking back on it now, I just couldn’t relate to anyone.
I would find the differences in the people, circumstances, and situations so that I was left standing utterly alone, unable to find comfort in any of the sentences that I read on the screen.
Reading those words and seeing the hope and the progress as the parents of these children reveled in their accomplishments, left me yearning to find the key that opened the door to their secret world.
The world, in which people who believed in their special children and accepted them, lived.
Where was my key?
How do you learn about all of the differences in your child, how do you sit through evaluation after evaluation of disappointing prospects and yet still find the key to acceptance?
How do you get to that place?
I sought out those stories of the milestones these children met, delayed yes, but nonetheless met, and wondered if my girl would ever do any of those things.
I wasn’t sure that she would.
I tried to compare her to similar children (when I found them which was rare) and felt defeat after defeat as they surpassed her by miles.
They learned to crawl and walk and talk and when my daughter reached that same age? She just didn’t.
The remorse and regret and guilt of all the possible things that I could have done different or better or faster… It just crushed me.
When she didn’t do the things that I thought she should do, I felt like such a failure as a mother.
I had failed her.
I hated that feeling, but I just couldn’t make it disappear.
I met lots of doctors who, when asked questions of what she would do, responded with shadows of “might not”‘s.
I also met lots of therapists who replied to the same questions with cheerful “might”‘s.
I tended to drift and focus more on the might nots.
When I would try to discuss my fears of the future with people, and I did so rarely, they responded as people do.
They told me to believe that she would grow up normally. They told me that my fears were silly and that I shouldn’t think such things.
They told me to look on the bright side.
Easy to do when it’s not happening to your child.
In truth, they were well meaning people with good hearts who wanted to help me but were completely
Sometimes it’s hard to talk to people like me.
People who, when in such a place of darkness, find fault with every well meant comment or upbeat possibility.
Where was that key?
As time passed I just stopped talking about it. I didn’t want to be the downer of the conversation wallowing in all of the shame I felt. The self pity, that I didn’t see as self pity, but most definitely was.
I couldn’t talk about the guilt.
Who do you tell when you have feelings like that?
God and I were definitely NOT on speaking terms after Oli was born.
How could HE let this happen to a child? To MY child more importantly.
I felt like it was all my fault and I couldn’t admit that to him.
I guess I felt that it was his fault too.
Like this was something that we had done to her. Something that shouldn’t have happened.
I couldn’t tell him that.
No. We already talked about that up there^^.
Nope. Not her either. Too much guilt. Too much shame.
What had I done to her very first granddaughter?
Sooooo… that left?
Except it didn’t really.
It turns out there were a few people that I would meet along the way that would help me to find my key.
People who had been in and out of my house since this whole thing happened.
People who saw mothers like me and children like Oli every single day.
They were the therapists who worked with my daughter.
Not all of them were warm and cuddly.
Not all of them were inviting.
Not all of them I could open up to.
But some of them… I could.
Some of them had a compassion and a keen sense of understanding for a situation that they had never lived.
Some of them didn’t even have children of their own!
But it didn’t matter.
For some reason they had the right tone of voice, they said the right words, they were silent when I needed them to be, and the outer shell that I had created began to dissolve.
It turns out that I met a succession of these therapists in the exact right time in my life where I was able to hear them.
I was able to be honest about my fears and my wounds and as I listened they began to heal me.
In the beginning I guess they couldn’t help me because I was so engrossed in putting on a good front. I was so focused on pretending to be strong that I never let my fear seep through the words of strength that I wove together.
I didn’t feel like I could tell anyone let alone a stranger!
I ended up learning that sometimes a stranger is a heck of a lot easier to talk with.
Especially a stranger that isn’t really stranger because they come into my house every week and watch me fold laundry (including my underwear that likes to fall out of the basket at the most I inopportune times!)
They watch my children bicker and me burn the dinner.
They watch my 3 year old run out of the bathroom naked from the waist down and listen as she recounts less than savory tales of our household.
Basically they just see us…as us.
They see me…as me.
Eventually it becomes very difficult not to open up to someone who sees you as you are.
It might have started with a simple question.
“So how are you doing with all of this?”
Followed by a quiet stare as I repeated my all too well known response to that question.
It might might have started with that stare that bore through my soul.
That stare that unequivocally meant
“No really. I know you can’t be fine so how are you?”
I don’t really remember, but I know it started with them.
It started with them showing kindness and empathy and it started with a trust that developed between us.
As I allowed the door of communication to be opened, as I began to finally relate with people who understood me, they began to lead me down a path towards finding my key.
My key to peace.
My key to happiness.
My key to acceptance.
…to be continued.
First part of an upcoming speech on communication between team members.