Tuesday, May 24, 2011

"Not Acceptable"


I just found this in my inbox and am thrilled!  Lauren Potter and Jane Lynch of Glee are part of his "hard-hitting" PSA that addresses the fact that the R-word is just as hurtful as other slurs that are no longer a part of our lexicon.  For people with intellectual disabilities and their families, the R-word is an incredibly hurtful slur.


I admit that until I had Joey I had not truly thought about the R-word and what it means and how powerful it is.  


I recently was talking to another mom who has a son who has Down syndrome.  He is 25-years-old and what hit the most in my gut was that his mom told me that when people use that word, he knows exactly what it means and it hurts.  When you really think about the person it is being directed at knowing what it means--that is when I get a lump in my throat.


I am guilty of having used it in the past in casual conversation.  I thought that because it wasn't directed at anyone that it wasn't hurtful.  I was wrong.  I was so wrong.  We are all human, we all make mistakes and we can all try to be a little bit better and a little more thoughtful.  Please join me in trying to use a new R-word-- Respect.





New Spread the Word to End the Word Campaign PSA


    This 30-second television PSA gives voice to a variety of diverse communities, each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from “Glee” stating that it is not acceptable to use the word ‘retard.’ She and “Glee” co-star Jane Lynch make a call to action to stop using the R-word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities. 

    One constant challenge with raising awareness about the hurtful nature of the R-word is that most people do not view it to be as hurtful as other common epithets that our society has consensually removed from our lexicon. The PSA “Not Acceptable” tackles that challenge head on in a hard-hitting and impactful way in an effort to educate our society that for people with intellectual disabilities and those that love them, the R-word is just as hurtful as any other slur. You can make a difference today by taking the pledge to stop using the word 'retard' and replace it with a new R-word: Respect.

    “Not Acceptable” has been previewed by and received support from multiple advocacy organizations including the Anti-Defamation League, Special Olympics, GLAAD, Best Buddies, The National Action Network, The Hispanic Federation, National Puerto Rican Coalition, The Asian-American Foundation, AbilityPath.org and the NAACP.  See the statements of support.
    To date, multiple networks have committed to airing this powerful and compelling PSA including Fox and a majority of their cable channels and regional sports networks, MTV, USA Network and Turner networks including TNT, TBS, truTV and CNN.
    "Not Acceptable" was executive produced by Jim Serpico and Tom Sellitti of New York based Apostle, and shot, produced and directed by Spot On from City Island, NY.

    Monday, May 23, 2011

    Rock and Roll



    We've got a roller on our hands.... and I could not be a happier or prouder parent.  My face beams when I hear Joey announcing that he is awake and I go in his room to find...






    One little lovebug with a foot stuck hanging out of the crib.




    He wasn't crying.  He was just babbling and hanging out with all of his "lovies".  


    He has started this rolling and he now goes from front to back and even back to front.  Joey will be 8 months old this week on the 27th and we are so proud of him.  


    It was a big weekend for everyone.  We had a special visitor on Saturday-- Miss Lindsay-- my friend from childhood in Kettering, Ohio.  Lindsay and I met in 7th or 8th grade and then her family moved away to Chagrin Falls when we were about to go into high school.  We lost touch over the years and then when I was moving into Morris Hall, freshman year at Miami of Ohio, who lived only 4 doors down from me?  Yep-- Lindsay!!!






    We even joined the same sorority (Tri-Delta) and had a heck of a first year of college, but Lindsay transferred to Tennessee after freshman year and this time we managed to see each when I was in  law school at OSU.  After that, I moved away to Washington, D.C. to be in the Navy and we lost touch again.  This time, we reunited (again!!!) when I moved back to Ohio and Lindsay had also moved to Chagrin Falls.  Like many of my dear friends who live out of town (some a little bit farther away), every time we see each other it is as if no time has passed at all.


    This time, Lindsay got to meet baby Joey for the first time!   We spent Saturday afternoon laughing, talking, crying and catching up.  She left her own two cutie pies (Jack and Luke) to spend the day with us and we so appreciate it--what a wonderful way to spend a beautiful spring afternoon.



    Trying out the bouncer for the first time.



    I think I like it, Mom!


    Trying out our "Snuggin Go". This was suggested by our wonderful OT/PT (Miss Kelly and Miss Denise) to help Joey to sit up straight in his highchair, stroller and seats.



    Food, please!



    This was the scene Sunday afternoon while Tommy was napping.  Joey and I had 60 minutes (we started halfway through Tommy's nap) to get some major planting done.


    My partner in crime got a little toasty, so we had to take a break in the A/C and remove the helmet for awhile.









    After all the hard work...it was time for dinner at the Halfway House.  And as the saying goes, "A body in motion stays in motion."  See Thomas Henry's feet flying above the air for proof.





    Wednesday, May 18, 2011

    No Enemies and No Regrets: 3 Weeks Until Joey's Open Heart Surgery

    Look at the big boy!  Our friends from Help Me Joe (that's our nickname for Help Me Grow) got Joey set up.

    Glee Spoiler Alert


    Last night's episode of Glee hit a raw nerve.  Thankfully, Lauren warned me about it before I watched it on the DVR tonight.  I am so grateful that Glee highlights a teenager (Becky, played by Lauren Potter) who has Down syndrome as well as an older women (Sue Sylvester's sister Jean, played by Robin Trocki).  To turn on the television and see not one, but two individuals who have Down syndrome have meaningful roles on such a major show means the world to me.  It is just one more way of educating and exposing the general public to individuals who have Down syndrome.  By the way-- it is best to say someone "has" Down syndrome instead of saying they suffer from it.  It goes back to the People First Language.  Down syndrome is not a disease.  You would never say someone "suffers" from having brown hair-- they just have brown hair.  Again-- this is information I never knew before we had Joey.  It's a huge learning curve and I'm just trying to help spread the word.  No judgment-- just trying to educate myself and others.  Okay-- I digress.


    Until recent decades, people who have Down syndrome didn't have a very long life expectancy.  According to my "Babies with Down Syndrome: A New Parents' Guide"-- their life spans have increased dramatically due to the advancement of medical treatment. The book says that in 1929, the average lifespan of a person with Down syndrome was nine years.  Yes- you read that correctly-- nine years.  In 1985 the average life expectancy went up to 25 and today, in 2011, it hovers around age sixty.


    The character Jean was so special to me because she showed a side of Down syndrome that we rarely see.  An older person who has it.  So often we see babies or toddlers or maybe even teenagers who have Down syndrome be highlighted, but to see someone like Jean who has lived a relatively long life was so inspiring.  I held Joey and fed him his bedtime bottle while we watched Sue grieve the loss of her sister.  She said in the eulogy of her sister, Jean, "She had no enemies, she lived with no regrets."  That's when the waterworks really started.  I hope for both of my boys that they will live such a life as to have no enemies and live with no regrets--this viewer will greatly miss and mourn the loss of Jean.







    I think I also took Jean's death on Glee especially hard because of what the near future holds for Joey.  In just three weeks from today, on Wednesday, June 8th, he will undergo open heart surgery to repair his ASD/VSD and his leaky mitral valve.  Suddenly it seems as if we are living in a time warp and time is moving at a quick and rapid pace that I can't slow down no matter how hard I try.


    Interestingly enough, the U.S. News Best Children's Hospitals came out for this year and the University of Michigan C.S. Mott Children's Hospital was ranked #3 in the nation for pediatric cardiology.  We have so very little control over what will happen when Joey has his open heart surgery and I'm immensely grateful that we are going to such an incredible institution for his care.


    Friends and family ask, "Are you ready?"  I'm trying to be ready, but ultimately, I just don't know what to do with myself.  I try to hold and love up on Joey as much as possible.


    We are Buckeyes....


    I try to spend quality time with Tommy and get things organized for him while we are gone.


    Most recently I've been trying to create a Packing List for me and Joey.  I've researched other blogs and the boards on Babycenter.com.


    Here is what I've come up with so far-- if anyone has advice or words of wisdom-- Please Share!!


    What to Pack for Open Heart Surgery


     Packing List for Joey
    1.  Two of his blankets
    2.  Photo Collage of him, Tommy, family for his crib
    3.  His lamb lovey
    4.  His bottles, nipples, thickener
    5.  Baby legs for his little legs (I'm obsessed with these for his hospital visit- I bought 8 pairs)
    6.  Some extra diaper wipes from home
    7.  Books to read to him when I am not allowed to pick him up
    8.  Larger sleepers/front button outfits
    9.  Socks
    10.  Joey’s health folders and insurance information
    11.  Notebook and pen to take notes during rounds

    Packing List for Me
    1. Cell phones and chargers
    2.  Laptop and charger.
    3. Video and charger.
    4. Camera and charger.
    5. Toothbrush/toiletries.
    6. Extra socks.
    7. Tank tops and hoodies to layer
    8.  Towel, pillow and blanket (recommended because the hospital towels are tiny)
    9.  Magazines/book
    10.  Healthy snacks:  oatmeal, almonds, tea bags, via coffee, apples, cheese
    11.  Hand soap and lotion (recommended because the hospital variety is harsh)
    12.
     
    Candy/treats for the nurses and doctors
    13.  Thank you notes
    14.  Vitamins
    15.  Lip Balm
    16.  Lululemon reusable water bottle
    17.  Reusable/insulated coffee mug
    18. Disposable face cloths
    19.  Comfy slip on shoes
    20.  Cozy pants to slip on to sleep in while staying in Joey’s room

    That's all I've got so far, but the list grows every day.... I'm not exactly known for being a "light" packer.  

    In the meantime, life goes on and in the process of waiting for Joey's open heart surgery-- he's been growing up on me!  How dare he!  This little guy just gets bigger and bigger.  He's now doing solids for breakfast, lunch and dinner.  And...drumroll.....he got his first tooth!!!

    Mom--here is the picture you asked for!!!
    He's growing, changing-- even rolling!



    First time trying puffies.


    Ooohh, baby boy's eyes look so green in this shirt!

    Thank you, LoLo!


    Yes-- those are the support tubes that fit into Joey's high chair. Tommy was holding them hostage tonight.

    So, time marches on and we march on trying to enjoy each and every single day--trying to live without any enemies or regrets.  Wouldn't the world be such a better place if all mankind could adopt that motto?  It's not always possible, but it is at least worth trying especially because life is so precious.