Thursday, October 6, 2011

Heal Thyself

People with Down syndrome and their families will deal with many types of therapies in their lives;  Occupational, Physical and Recreational are only a few of the many specialists that will be called into play during Wyatt's lifetime.  Most people when the hear "therapy" think of the psychological type;  that will play a role as well.  During our blogging-extravaganza for Down Syndrome Awareness Month I will be using Thursdays to talk about the different therapies that have helped us and our son.

For our first Therapy Thursday, I figured it would be best if I mentioned our most effective therapy yet and the one that has helped me the most:  this blog.

I am a Psychiatric Nurse... I work in the Mental Health Unit in the ER of a very busy hospital.  There is only one of us on at a time. I am used to seeing people on the worst day of their lives;  I swoop in,  provide support and comfort and then swoop out again.  I shine lights into dark corners, which is not always a welcome thing.  Sometimes I have to restrain people and medicate them against their will.  Sometimes I get hurt.  It's rarely a happy place.

To combat the stress, I have my little hobbies.  I garden.  I take photographs.  I also have a sense of humour that is so dark I can barely see most days.  At some point around 2004, I started my first blog.  Really it was just an excuse to show family some of my photos and tell their stories.  As time went on, I figured out that writing was an excellent way for me to organize my very busy brain.  Sitting down and typing things out often helps me realize what is important, what is most pressing and helps me get a better grasp on any feelings I am having.  It certainly helped me cope with the nightmare of my son's birth.  As time went on, I found myself writing more and more, especially when I had a big decision or a life changing event. 

Down Wit Dat started elsewhere, as a series of updates for my friends and family. After the shock of Wyatt's diagnosis, I had to gain some perspective and fast.  After all, I still had two babies in my belly to finish nurturing.  I had to remain calm when all I wanted to do was fall apart.  I also had umpteen people to tell and since the information was so detailed, I didn't want to risk playing broken telephone.  So, at the risk of annoying old friends and acquaintances, I posted the details to social media.

The response was overwhelming.  I had more support than I ever imagined.  People that I hadn't talked to in eons were now offering whatever they could to help, even if it was a few words of encouragement and hope.  As I plodded through the last month of pregnancy and all the appointments within it, I shared it with others (mainly at their insistence). 

At the same time, I was searching for Down syndrome resources that met my needs.  It was a hard search.  Although my "Medela Moments" guaranteed that I'd be on the computer every four hours, I didn't always have it in me to look up details and search for twins that were like mine.  I was frustrated and ran into so many brick walls.  Over time however, I started to compile a list of resources that I found helpful, links that I found useful and actually learned something from.  Some time around May, I was talking to my husband Sean and he suggested that I start a blog for my Down syndrome related entries.  I hummed and hawed a bit, wondering if I would have the time when he added quietly "you could really help some people".

I thought about that one for a while. 

After Wyatt was born, after we got the official diagnosis of Down syndrome, I felt like I was stumbling around in the dark.  I could not imagine what it would be like to not have a medical background and find this out about your child.  But, so many people do.  I thought I'd put our somewhat unique twin story out there in cyberspace as a beacon and maybe I would find other parents in our position.  Maybe I would help a few people in turn with the resources that I would provide.

My little signal fire quickly caught on and I unwittingly set the forest ablaze.

What I believe I have done and what I wish to continue to do is to spread awareness and education about Down syndrome.  By sharing our story I hope to increase acceptance and inclusion through familiarity.  Down syndrome is not the bogeyman.  It is not the end of the world.  It can be very beautiful, you just have to know where to look, beyond old stereotypes.

If I reach one individual, I have already made Wyatt's journey that much easier.    For that individual will reach at least one other and that person's acceptance can improve the world for someone else with DS.  There is no cure to find or monument to build.  All I ask anyone to do is to open your mind and your heart.  Support inclusion.  Educate yourself and your children.  Understand how using a word to mean one thing when it originally meant another, hurts a group of people that truly don't deserve it.

Writing this blog has helped me become a more open and honest person, which can only serve to make me a better parent to all my kids as I, in turn, become a better person overall.  I have learned much and connected with so many, including the parents of twins that I set out to find so long ago.  It has taught me humility and helped us through a very difficult time.  It has become a conduit for information, awareness and support;  one that flows both ways. I hope to continue to share with you our lives with Down syndrome, to further my education and to foster respect for an often marginalized group of marvelous people.  One of which I am lucky enough to call "son".

2 comments :

  1. im in love! my sister is 3 she has down syndrom shes the most beautiful thing weve ever had in our lives. she makes us happier than anything in the world. im glad to see a positive blog about down syndrom its very nice

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