Monday, December 17, 2012

What Does Santa Know About Down Syndrome and Remembering the Angels

Tommy and Joey sat on Santa's lap a few times over the past couple weeks. Tommy has finally overcome his fear of Santa (he seems to have figured out that Santa=Presents) and Joey has a healthy interest in figuring out what that large white beard is all about. 

Last weekend they had the chance to sit on his lap once again and discuss hopes and wishes for Christmas 2012.  Tommy would like "a dragon castle" and I'm pretty sure Santa is going to bring Joey a water table to help him work on his standing skills. 

When Tom and I walked over to pick up Joey and Tommy after their turn, Santa looked at us and said, "Joey is a very special boy."  Uh oh.  Here we go. We hear the word "special" in our life a lot. There is the Special Olympics, special needs, special schools, special toys--sometimes so much that you wonder what "special" really is anymore. I try not to be defensive.  I really do. Most of the time I do a pretty good job of it. I pray to God and ask for grace and patience and understanding. Sometimes I just don't want to be told my kid is "special" because he has Down syndrome. Sometimes I just want him to be another kid sitting on Santa's lap.

Santa went on to say, "You know, I have a daughter just like Joey, but she is grown up." Then the tears started and I felt so horribly ashamed for puffing up my mother hen feathers and being immediately ready to be defensive.   "She is doing great," he went on.  "She lives on her own and has a job and a wonderful life."

Santa at FCC told us about his beautiful daughter who also has an extra chromosome.

Turns out-- Santa happens to know a lot about Down syndrome. Turns out I'm still praying for grace, patience and understanding. Turns out, not knowing what everyone is thinking all the times is pretty amazing. Turns out, it's important to give people a chance to share their thoughts with you. 

Remembering the Angels

Today the family of Noah Pozner buried their precious son. How does a parent survive burying a child? How does a parent survive when their baby doesn't come home from school one day and never will? How do any of us ever come to grips with what happened? How do we explain it to our children? How do we resist the urge to politicize this unthinkable tragedy? How do we fight for what will keep our children and our society safe? How do we move forward?

For a parent to bury their child must be one of the worlds' greatest injustices. We are praying for all of the children, the families, the siblings, the teachers and the community of Newtown, Connecticut. 

Today, Veronique Pozner did what every parent prays they will never have to do. She gave a eulogy for her son. As she says to her son, "Take flight, my boy. Soar." I hope you find as much comfort in her words as I did. Her grace and strength is remarkable.

The sky is crying, and the flags are at half-mast. It is a sad, sad day. But it is also your day, Noah, my little man. I will miss your forceful and purposeful little steps stomping through our house. I will miss your perpetual smile, the twinkle in your dark blue eyes, framed by eyelashes that would be the envy of any lady in this room.
Most of all, I will miss your visions of your future. You wanted to be a doctor, a soldier, a taco factory manager. It was your favorite food, and no doubt you wanted to ensure that the world kept producing tacos.
You were a little boy whose life force had all the gravitational pull of a celestial body. You were light and love, mischief and pranks. You adored your family with every fiber of your 6-year-old being. We are all of us elevated in our humanity by having known you. A little maverick, who didn't always want to do his schoolwork or clean up his toys, when practicing his ninja moves or Super Mario on the Wii seemed far more important.
Noah, you will not pass through this way again. I can only believe that you were planted on Earth to bloom in heaven. Take flight, my boy. Soar. You now have the wings you always wanted. Go to that peaceful valley that we will all one day come to know. I will join you someday. Not today. I still have lots of mommy love to give to Danielle, Michael, Sophia and Arielle.
Until then, your melody will linger in our hearts forever. Momma loves you, little man.

Wednesday, December 5, 2012

Different, But Not Less

I was telling my friend Maureen about how obsessed we have become with the Showtime series, "Homeland" when she told me we should watch an HBO movie featuring Claire Danes called "Temple Grandin". We finally started watching it about two nights ago and were immediately mesmerized by the story of Temple Grandin. 

Grandin was diagnosed as having autism in 1950 went on to earn her Ph.D. and is one the leading livestock handling equipment designers in the world as well as a self-advocate for individuals who have autism.
Temple Grandin Poster
Claire Danes stars as Temple.
Photo of Temple Grandin. Her website:
While her mother, Eustacia, was told to institutionalize Temple, she refused. She fought to have her daughter included in typical schools and to have every opportunity her other children had.

Her mother's motto throughout the movie was that Temple was, "Different, but not less." How her words rang so very true for our family.  Tom and I sat in silence and watched Temple's journey and struggles to be given the same opportunities others were given. Our eyes filled with tears as we watched her mom go from struggling to teach her to talk to attending Temple's college graduation. 

Photo by Nat.
Being a parent advocate is such a fine line to walk. You have to learn to balance your passion and emotion with clarity and calmness to be heard. You have to advocate (which literally means to plead the cause of another) in a way that is meaningful and helpful instead of detracting from the cause you are trying to champion. 

Photo by Nat.
In a world where the idea of perfection and "healthy children" are the supported ideals, it is sometimes an uphill battle to help convince the world that while your child might be different, he certainly is not less. Watching what the world looks like to Temple Grandin made me really wonder what the world is like for our Joey. Is it frustrating for him not to be able to verbalize his feelings? Does he get tired of not knowing how to walk? Do our every day noises overwhelm or bother him? I don't know the answers, but I do know that this movie was a great reminder of trying to be empathetic and trying to continue to understand that the world can be a very overwhelming place at times for individuals who have special needs. 

Photo by Nat.
Photo by Nat.

Do different people stress you out? Have you ever avoided making eye contact with someone because they were in a wheelchair or looked different than you? Have you ever found yourself saying something incredibly awkward because you didn't know what to say to someone who was different than you? Why are differences so difficult for us as humans to accept? I'm just as guilty of it as anyone else. There are times when I look away from another family or child at the hospital because I just don't know what to say. I know what I should say is something from my heart. The same things I would say to any child. Things like, "I like your shoes." Or, "How are you today?" It is something I continue to work on and try to improve.

Photo by Nat.
In our world, there are days I handle the stares and awkward conversations with grace and ease.  Then there are the days I'm just not up for it.  Days like today while I stood in line to get my medicine for strep throat and the woman in line in front of me JUST KEPT STARING AT JOEY. I smiled the first time we made eye contact, but it started to get awkward after about 5 minutes. It's the same old problem I have. I honestly forget he has Down syndrome.  I forget that it's a thing to some people. I forget that Joey probably looks different to some people. In all honesty, the woman probably knew someone else who has Down syndrome and wanted to say something, but she didn't know how to, so she stared at us. It also could have been that she felt bad for my two kids having such a disheveled mom in her house slippers out at the pharmacy. Whatever it was, it just happens sometimes and it is our mission to continue to educate the world that Joey and people like Joey might appear different, but they certainly are not less.

Photo by Nat.
It is also for this reason that I am so very passionate about prenatal education and information for parents who find out their child has Down syndrome (or any other syndrome) in utero. If I could I would stand from the highest of mountains and scream to the world that children with Down syndrome might be different. They may have some additional health concerns. They may have some additional learning challenges. They may be a lot of things, but they are certainly not a single bit less in the eyes of God.

While Temple's mom was advised to institutionalize her daughter back in the 1950's we were encouraged to abort or even put our child up for adoption. If I can help change that thought process for even a single parent, I will have succeeded.  An excellent source for expectant mothers who have received a prenatal diagnosis is Down Syndrome

Have you spoken to someone outside of your comfort zone lately? Are you okay with differences? What would you do if you were pregnant and were told your child has Down syndrome?