Okay- please bear with me on this post.
Within a few hours after Auggie was born, Tim and I both agreed we wouldn't be the preachy type about Treacher-Collins Syndrome. No pushing people into donating or fundraising or volunteering their time... nothing like that.
However, I just can't help myself since...
I mostly want our friend and family (... and well, everyone!) to realize every person is different. I want you to think before you make comments about someone's appearance even if it just a quiet whisper to your friend or even a loud joke later amongst a group of friends. I'm sure everyone has been in that situation- heck, I'll even admit I've been there and done that. But I do know I've stopped since I became a mom. [insert Family Guy's Brian "until you have a child" joke here]
But seriously, instead if poking fun or staring or even ignoring it altogether... educate yourself! Take the time to learn something new. Don't just pretend to care... DO care! It might pay off in the long term. You might make someone's day or even gain a new friend. It might even help you personally one day.
A Facebook friend posted this and I thought I'd share with you....
"Please take a closer look at me, not what you see but what’s beneath
To you I may not look the same as others that have come your way
But my face does grin when I am glad and my eyes cry when I am sad,
I need comfort when I’m in pain, will you take a look again?
My heart beats the same as yours, can you try not to overlook
that I am human just as you and I need love and acceptance too.
God creates each of his children, with no mistakes when sent from heaven
So, before you point at me and laugh, take time to know the other half
the part of me that doesn’t show, you will change your mind I know.
My soul is gentle and I am kind, strength and faith I have inside
I hope someday you will believe that we are not so different see,
And At the end of every day, I close my eyes real tight and pray
that someday you won’t turn your head, but get to know who I am instead
I am more than just the face you see. Would you please take a closer look at me?"
By: Carmen Mickley
I know it usually brightens my day when someone asks about Auggie's syndrome (other day, not so much, but I'm getting better). And I usually feel better once I answer them. With the simple answer of what TCS is, I have put Treacher-Collins Syndrome into their vocabulary; I have spread the word of a syndrome that not many people know about; and I may have sparked some curiosity to go read into it.
I mostly hope I spark interest in finding more information. We went into my pregnancy knowing we didn't need to any genetic testing because there is no history of diseases or syndromes in our families. It never crossed my mind we still had a chance of a chromosomal syndrome affecting our family. I would like for anyone who wants kids or has kids to keep that in the back of their mind... it can happen. It was a 2% chance for us... It can definitely happen.
I'll get off my soap box now but before I leave you to take advantage of Craniofacial Acceptance Month.. I'd like to thank everyone and anyone who has sent me texts, a emails or Facebook messages (etc) about being here for me. I know I haven't really opened up to anyone but I really do appreciate all the kind words I have received. I'm getting there... and you never know, maybe it'll be the one time you ask and I actually open up. Our family has been wonderful and I know we have the support from all of our friends. So thank you, with all my heart I thank you! (Heather, Jenna, Emily, Liz and my IG Moms... to name a few friends for now- the longer list and a better thank you is coming later).
I listed a couple organizations that have helped us along the way. If you ever find yourself wanting to donate money or volunteer your time, please look into them.
Children's Medical Center Foundation of Central Texas (Seton group of hospitals' donation site)
The Ronald McDonald House Charities of Austin and Central Texas: Since Auggie spent 12 days in the NICU at Dell Children's, we were very thankful they had a Ronald McDonald House just across the parking lot. For a small fee a day, we were supplied with an amazing room and 2 meals a day. But that is only possible if people help out. They accept monetary donations as well as volunteers to cook meals, clean, etc. I highly suggest looking in The Ronald McDonald House Charities.