Sunday, May 8, 2011

Our Tribe

I was up before my kids this morning, super excited that I had an hour of uninterrupted time to write my post for Hopeful Parents.  At the end of that hour my computer crashed and I lost the entire entry. 


SO instead of re-writing it under rushed circumstances, I figured I would wait until I had another hour of uninterrupted time. 

Who knows when that will 

Below is a post I wrote in February about what I like to call our tribe :)

Happy Mother's Day

"A Special Needs Tribe"

Every second and fourth Friday at my clinic is our epilepsy clinic, these patients have seizures that require the care of two world-renowned epileptologists. 

It isn’t a coincidence that a lot of these adults are developmentally delayed and due to tragically long wait times in our clinic, I get a lot of time to get to know the caregivers and parents of my patients. 

I get to speak with moms that have raised their wonderful children in a time when there was little to no support, I envy their strength.  We compare stories, services, bad times, and good times. 

I always end our conversations by telling each mom that she is doing an amazing job, each time I say it, one or both of us cries. 

Every second and fourth Friday I am surrounded by people who ‘get it’, they get the good days, the bad days, the fear, the love, and the hope. 

My mission on these days is to be a shoulder, an ear to vent to, and to let them know that I will make sure that their children are medically taken care of.

I ’get it.’ 

We are a tribe of parents with children that have special needs.

After these clinics my level of emotional exhaustion varies,and it is always directly connected to what is going on in my home. 

I found myself in tears yesterday as the mother of a young man with severe autism and I shared stories of  ”when one thing seems to be resolved, another thing gets thrown at you.”

Another mother that has two boys with Downs Syndrome started crying when I told her that her boys are the highlight of my day when they come in and that she has done a great job.  She tried to brush off the compliment by saying “she just does her best” so I grabbed her hand and told her she that has raised two amazing young men (seriously I love them!). 

We hugged and cried for a long time.

We need to hear this.   The dark times are so dark for most of us and even the wonderful times seem to be tempered with a sense of foreboding.

When I got home after workI logged onto Facebook and  Beth had reposted a blog entry by MOM-NOS here on Hopeful Parents. 

 Just in time.

ANYONE who knows ANYONE that is raising a child with special needs, should read it.


Here is the link.

Thank you MOM-NOS for being so courageous and helping the rest of us put words to what we feel.  You have done something amazing.

Shivon can be found over at her blog "My Brain Wants To Go Home"

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