09 November 2013

Brother hugs

I had to write about this because I never want to forget how pure the love is between Matthew and Luke. 

This morning Matthew was eating his breakfast of Cheerios and home canned peaches (in front of the tv because my back hurt too bad to sit at the kitchen table with him).  Luke was sitting in my lap. As Matthew ate, he shoved a peach in his mouth, chewed it up real fast and ran towards me. He jumped up in the recliner with Luke and I and proceeded to  give Luke a huge bear hug while saying, "Love you brother." In that moment, Luke (who loves to give hugs) pushed his arms around his brother's head, twisted his fingers around Matthew's hair and pulled him in close and planted wide-open-mouthed, slobbery kisses all over Matthew's cheek. Matthew squealed and hugged him tighter. I sat and stared at the little boys in my lap and soaked up the moment. :)

As a mom, nothing fills my heart more than the love that is developing between the two of them. 

03 November 2013

What is a "Celebutard"?

Being the parent to a child with a disability is tough stuff on many levels, however the complexity in that statement comes in that it's made even more wonderful because of the success that comes along with overcoming the associated obstacles.

Last week, a perfect example presented itself that I feel compelled to share with you all. I've mentioned before that I'm a member of a secret group on Facebook for mothers of children born in 2012 / 2013 with Down syndrome... we loving call ourselves "The Rockin Moms" because our kids are all "Rockin an Extra Chromosome" and awesomely enough, there are nearly 150 "Rockin Moms" in our group. We live all over the United States and even have some members who live in Australia. It's an odd thing, but even though I've never met 99.9% of these women in real life, I feel overwhelming connected to them as we share many of the same challenges as mothers to babies with DS. Our group has been a lifeline for me when I've felt the most lost and I'm constantly amazed with the kind of things we talk about... real stuff. Feelings - good, bad, positive, dark, uplifting... you name it! We pray for one another and each others' children, we share medical issues, developmental / therapy ideas and cheer each other on when life is going good! Because of our collective experiences with Down syndrome, we have come together to draft a pretty wonderful book that compiles our personal stories about receiving a prenatal diagnosis of Down syndrome for our children or the surprise of meeting the diagnosis of Down syndrome either immediately or within a few hours of giving birth to our babies. Our goal in sharing our stories is in the hope that we can comfort other familes who find themselves in similar circumstances. (We are just beginning the process with publishers however, so it will be awhile before I have more news on this topic :). The "Rockin Moms" also have this forceful desire to make the world, society, culture, etc. a better place for our children and others with disabilities.

Keeping the above context in mind, last week one of the moms posted in comment in our group about an online shopping experience with Sephora. She shared that she discovered a lipstick marketed through Sephora and produced by Kat Von D named "Celebutard".

What is a "Celebutard" you might ask? Urban Dictionary offers this definition: Celebutard: Conflation of the words "celebutante" (itself a conflation of the words "celebrity" and "d├ębutante") and "retard".

Wiktionary says: Celebutard (plural celebutards) 1.(informal, pejorative, offensive, slang) A celebrity viewed as unintelligent; especially a celebrity who behaves badly in public.

I have also discovered that there is actually a book entitled, Celebutard written by Andrea Peyser.

I am at a loss with why our society thinks it's okay to use the word (or any combination of words including) "retard" to describe something or someone seen as stupid or dumb. The connection between the diagnosis of Down syndrome and the outdated term of "mentally retarded" is undeniable. The fact that people think it's okay to talk about "retards" in the same vein as those who are stupid and dumb is really offensive to me. The "R" word as I like to refer to it (as the real "R" word makes me cringe) has become so common in our society that I'm seriously disgusted. A co-worker is constantly referring to his dog as retarded and others who have made similar comments. I'm sad that others don't see the hurt that comes along with talking down towards others.

I'm also discouraged with our society, one that thinks its okay to write books about celebutards and decorate their lipsticks with the made up word. How does that sort of thing get past authors, editors, marketing teams, executives, retailers? People who are educated? Undoubtedly one (or more) of them have family members effected by Down syndrome? How does this happen, don't their hearts and their brains work together?

This is where being the parent to a child with a disability has been really tough for me. I can deal with Luke's medical issues, I can learn his therapies, I can revel in his smiles and kisses and I can feel lots of joy when I see he and his brother interact. It's much harder to understand the kind of world my son has been born into. While our wonderful, rural little farming community has welcomed our family with outstretched arms and have extended a very special love towards Luke and the rest of us, it's the fact that there are people out there (apparently more than I realized until recently) who are okay with disrespecting those with disabilities... to the point that they are exploiting outdated medical terms used to describe them for their own personal wealth and / or twisted humor. Enter "The Rockin Moms"... we have joined forces to speak out on behalf of our children and fight what feels like a losing battle. If you agree with our mission to "End The Word", please speak up!

Here are some places you can comment with your thoughts:

Sephora's Facebook Page

Sephora on Twitter

Kat Von D's Facebook Page for her Makeup Line

Kat Von D on Twitter