Saturday, May 21, 2011

Alone no more.

Three and a half years ago, I was alone. Alone with my anxiety and fear, alone with unanswered questions, alone with what to do next.

Countless hours of surfing the Internet for others, others like me, mothers like me. I knew if I stayed alone with all of this, I wouldn't survive. I found one "special needs parenting" chat group that proved to be quite worthless.
I called local organizations that advocate for kids with disabilities, there was a support group for Down Syndrome parents, quite a few groups for parents with kids on the Autism spectrum, another for ADHD.
I called the local chapter for epilepsy, nothing, except a group for adults that had epilepsy.
Alone I was.
I asked Dermot's therapists if they knew of any place for someone like me, puzzled looks were my answer most of the time.
I asked Dermot's teacher, she promised to connect me, if she found a match.
I kept going. Talking to anyone I knew with "special kids".
I met with my friend's sister who had a little boy with down syndrome. We talked about being different and I observed her how she didn't seem to falling apart at the seams, as I thought I might at any minute. That gave me a glimmer of hope.
I kept going. I met with a friend who has an adult daughter with intellectual disabilities, her daughter lived happily in a group home and kept a job and seems to enjoy her life. Hope grew again.
I kept going. I received a phone call months later from a mother of three, she had a son two weeks younger than Dermot. He had seizures too. I was strangely excited. Someone like me, I thought.
I kept going. That fall, we both ended up attending a newly resurrected parent group that Dermot's school facilitated. The only requirement for this group was your kid had to be enrolled at the school.

This was the beginning of the end for my isolation. In this group I met a woman whose only son had autism, a single mom whose only son was fighting a severe seizure disorder, a mother of three boys, her twins were affected by serious medical issues and cerebral palsy, a single mother of four who was ten years my junior, dealing with a very strong boy that had behavioral disorders, a mother of eight fighting for her youngest daughter against a rare genetic disease. We were people who would not normally mix, pulled together by a common affliction. Pain. A desperate need to connect.

We formed a mini community, sharing resources and therapists, opinions and feelings, dinners and nights out.
We meet twice a month and get together with "alumni" as time permits. Always knowing we have a connection.

My community also grew thanks to the Internet and the wealth of special needs bloggers like myself. First there was Special Needs Mama and her: The Mother at the Swings, then Fawn from Whitehorse, and Samatha's Mom, Following Elias, Zach's mom and Jacob's mom Maria. Facebook friends like Deborah and Tracy whom I've never met, but helped me tremendously.

Then there are the moms I think of as "typical" helping me thru a feeding tube crisis. Another sharing her experience with the death of her son. A handful of other "typical" moms that would bring me dinner in the hospital or watch my other children while I tended to a sick little Dermot.

All this time I'm quite aware there will be more of us, unfortunately. More children getting assessed, more children in the hospital, more moms getting their lives turned completely upside down and never to return to the version of normal they knew before.

I don't want them to be alone, I don't want them to think there's something wrong with their kids or themselves as mothers. I want them to know there are moms out there wanting to help, wanting to give them a hug, or some tough advice or hold their hand through a tough doctors appointment or IEP meeting.

I am alone no more, you don't have to be either.


Fawn said...

Group hug! Thanks for that post, Sue. While no one wants to be part of the club, I'm so glad you've found people to connect with. Warm wishes from sunny Whitehorse!

Kate J said...

And thank you for being there for us, too, Sue!

Blake said...

I don't know what I would do without our little group either. Thanks for being there for me!

HeatherS said...

Suzanne: I am so happy to have found you, Fawn and Maria. It has been a God send to have people who know pull us through.

Thank you :)

Anonymous said...

You have a way with words, Sue, your post brought tears to my eyes. Thanks for telling once again about the pain, isolation and soul-warming friends that are part of this special-needs alternative reality.