wolfhirschhorn.org

*Below is a  blog post that was written in September 2009 and originally posted on our personal blog KnowingNorrah. Enjoy.*

“There’s this saying – I’m sure you’ve heard it “misery loves company.”

I haven’t said those words too often, probably because I don’t quite know what the statement means and I certainly do not want to embarrass myself by saying something that makes NO SENSE WHAT-SO-EVER. If I had to make a guess I would surmise that “misery loves company” means that miserable people try to make others miserable too so that everyone can be grumpy together. Sadness and sorrow can brood destruction, so watch out. Or, it might mean that two people who feel sorry for themselves make great companions because they have similar perspectives and can wallow in and overcome their hardships together. It could also mean that when someone is angry or upset about something they try to convince others of their point of view because it makes the anger seem justified. I don’t know, really. I wish the statement meant that sad people just need friends around them to make them feel better. But, I think the saying “misery loves company” has more to do with the former definitions and less to do with the latter.

Defining the saying “misery loves company” is actually NOT the point of this post. So, then what in the world am I doing writing about it? Well, I will tell you.

I am a part of this family- a community of men, women, parents and siblings. It is a family that I never really anticipated joining but one that I am SO blessed to have. I am talking about the Wolf-Hirschhorn family. My Wolf-Hirschhorn family.

A few days ago I was sitting at my computer typing notes to my friends on facebook when a status popped up from a mommy of a boy with WHS. I promptly read it and got to work responding. It was like instinct. This mommy was asking some questions about recent health issues that her son was facing. I felt an urgency to find some answers or at least get a bit of an education on his health matters, because my heart ached for this little boy and for his parents. So, I got to work googling and researching. When I signed back onto facebook with my trusty internet research site links on standby (“control C-ed” and ready to paste into a message) I was humbled to see that several other WHS moms had already responded to the questions. I posted my messages of hope and help and then sat back and read what the other moms had replied – AND then I cried. Yep, teared up at my computer screen like a big, dorky mess.

You might be wondering just what it was about this sappy facebook moment that overwhelmed my emotions and even if you are not wondering – I am going to tell you anyway because that is the whole point of this POST:

Reading through the facebook messages and responses I recognized such a sense of community. Comaradarie, hope and love dripped from each little note and each little word that was written from one empathetic parent to another. I started pondering the past 6 months of my life and recalling all of the new friends that I have made. Most of us have connected over very tragic circumstances, our children being diagnosed with Wolf-Hirschhorn Syndrome, but our relationships and this community that we have created – well, it is FAR FROM TRAGIC. It is practically a guarantee that I will email or even facebook/blog comment with a handful of my closest WHS mamas everyday. I can also be certain that when I blog about a rough situation, post a status on facebook or even when I celebrate something totally unrelated to my daughter’s syndrome – like let’s say SELLING MY HOUSE – the majority of people who respond to me with words of condolence or words or congratulations are my WHS friends. These women (and a few men too) never seem to leave me hanging. They ALWAYS take the time to check in, ask about my children, and follow up with our family and our life. I have been so encouraged by them and hope that I have served as an encouragement as well. Parenting a child with a chromosomal disorder and the related effects is probably one of the hardest life-long commitments that anyone can make. But, sharing this life-long journey with others makes it bearable and hearing words of hope and promise along the way makes it beautiful.

We are a community and though we may have formed through misery – we are held together by HOPE.

AND HOPE, HOPE LOVES COMPANY TOO!”