Sunday, May 3, 2015

Joyous May Day 2015

The winter was long and hard and we are limping to the finish line of this school year. 

For thousands of years when Spring was in full bloom the people would pause to celebrate the coming of the warm time and changing of the seasons.  May Day or Beltane as it is also known begins at sunset and continues through the next day.  This is a celebration of fertility and life.  It is a holiday of hope, beauty, and new beginnings. 

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As a child in the USA I have memories of making May Day baskets filled with treats.  We would deliver them to neighbors by ringing their doorbell and then running away so that they would not know who left the goodies.  I have thought of this every May 1st since becoming a mother and decided this year I would introduce my children to this tradition.

The screech of the school bus’ brakes preceded little girl giggles that filled the air like music.  We celebrated the return of dirty bare feet on soft green grass.  White paper cups, a roll of twine, a hole puncher, crayons, and stickers would be used to create our May Day baskets.  M&Ms, Sweet Tarts, Life Saver gummies, and popcorn were the filling.  Alexander popped in for a moment or two for treats before going off to do his own thing. 

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Traditionally the people would dance around a pole with ribbons woven in merriment signifying fertility.  Flowers, incense, feasting, and bonfires marked their celebration and ours.  Inspired from a scene in Alice in Wonderland, our Mad Hatter hat topped the pole which we secured in our umbrella stand wrapped in red, scrap fabric.  It turned out beautifully.

Neighbors shared long forgotten stories of their childhood May Day celebrations and I was dubbed the May Queen of Garrett Hill, which I quite like.  Our dinner was grilled and we feasted outdoors by candle light.  The last hours of the day were spent mesmerized by the dancing flame of our back yard mini bonfire and the sweet smell of vanilla incense smoldering on the log.  The girls fell asleep in the night air.  Only when the last of the embers had died out did their daddy carry them one by one to their beds, perhaps dreaming of magic and fairies.

A larger version of the video can be found HERE.

Wednesday, October 1, 2014

Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

Saturday, July 5, 2014

Independence Day

We decided to take this year off from hosting our annual Garrett Hill parade watching party.  We just weren’t up to the work involved in party prep.  Rolling out of bed late, I grabbed a quick shower and had my coffee on the front porch just as the parade began.  Some friends joined us and we filled the neighborhood with bubbles from our Gazillion bubbles Hurricane machine (Sophie approved).  Gazillion bubbles are truly the best, hands down.

Our neighborhood celebrated our 65th annual 4th of July parade and festivities.  We have an honest to goodness parade that happens to pass directly in front of our house.  Afterwards, the neighborhood park is abuzz with face painting, a dunk tank, a live show (magic in years past, a master juggler this year), bounce houses, a mini-train, spin art, hot dogs, pretzels, and drinks – all FREE!

I scooted Alexander over to our friend’s house as they were having their annual party that we are never able to attend due to hosting our own.  Their back yard bumps up against the park and gives them front row access (or back row as it were) to the live show.  Helena went off to the park with other neighborhood friends.  Mark and I strolled down with Soph at our leisure.

Typically we still have guests at this time and miss out on the activities in the park.  Typically it’s heat stroke hot, but due to some gentle rain before and after the parade and Hurricane Arthur it was perfect.  We were able to hang out with friends at their party and help ourselves to their food, which was a fantastic treat!  Although we missed our usual guests, this was great.

At most houses in our neighborhood, the sounds of parties and smell of BBQs filled the air.  After a lazy afternoon sipping wine, napping, and watching the Walking Dead marathon, we headed out for our township’s fireworks.  Again, we haven’t caught them in our 4 years of living here as we are all typically worn out by the party and heat and head to bed early.  It’s only a 10 minute drive, the entry fee goes towards our high school scholarship fund, and we met up with our friends who had terrific seats on the soccer field.  Grand!

None of the kids got scared and traffic home was a breeze.  I love this community.  This is home.  I’d like to thank our military for continuing to protect our freedom which allows us to celebrate in this way.  It is in their honor that I created this slideshow which I think captures a nice slice of what they work to protect.  Happy Independence Day!

Watch larger: 4th of July 2014

Thursday, June 19, 2014

Last Day of School 2014

Yea, though I battle through the valley of the shadow of IEP season, I shall fear not using the Procedural Safeguards: for the law art with me.

With a brutal winter and a ton of snow days, our school year ended even later than it typically does.  It is with great joy that we have entered SUMMER

This IEP season for both kids has been the most difficult to date.  Countless IEP meetings in person, via email and by phone could not resolve differences in opinion between our family and our district.  Hiring a great attorney changed all that and with her help we are finally moving forward in a way we can support.

I’m not litigious and pride myself with my negotiation skills, so it is no small thing that we are ending this school year and entering ESY for summer with 2 settlement agreements.  I did not want to have it go to this level, but our core belief in inclusion, FAPE, and LRE just didn’t line up with our district’s plan for educating our 2 kids with IEPs. 

Despite our disagreements I continue to believe we have a fantastic team of teachers and therapists who believe in our kids.  When you have as many team members as we do, you have to get creative in order to be thrifty with thank-you gifts.  I ordered these extra large soup mugs in November intending to use them as holiday gifts, but then I had spinal surgery and they sat in boxes.  I’m pretty happy with how they turned out.  Mark helped me package them in cellophane and ribbons and dropped them off.

In any case, I’ve learned so much through advocating for our kids and I am more determined than ever to make systems change.  I’ll just need a little time to recover.

Welcome to SUMMER - rising 4th grade boy and 2nd grade girl!

Saturday, April 12, 2014

Gratitude

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Yesterday Sophie went to her friend E’s “Birthday Party in Paris!”  I think the scarf and blue stripes fit the theme quite well.  Soph actually kept the scarf on the whole time.  E’s house was decorated in bubble gum pink, Eiffel towers and pink poodles.  So cute!

I brought a bag with an extra pull-up, wipes, and a straw/lidded cup. I pulled the birthday girl’s mom aside and for the first time ever (and Soph has been to a LOT of birthday parties) I truly did not feel apprehension.  I made sure she knew to use the cup to avoid a spill.  I showed her the pull-up and wipes and made sure she was comfortable helping Soph should the need arise.  She is pretty independent in the potty, but has a regular need for a change if we don’t initiate a bathroom break.   


AND THEN I LEFT! Mark and I had a babysitter coming over and I needed to get ready.  I actually RAN out the door. 


It wasn’t that the dozen girls swarmed Sophie when she arrived as if they hadn’t seen her in ages (it was 1 hour after school got out).  It wasn’t that the birthday girl’s brother exclaimed how much everyone really likes my daughter. 

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silly faces!

It was the quiet arrangements and understanding from the birthday girl’s mom that have me on.the.floor. 

She knew Sophie has to be closely watched or she is likely to run off and she’s fast.  As keeping a dozen 6-7 year old girls entertained is difficult enough on it’s own, being far into her pregnancy meant that she knew she needed reinforcements.  So, she got them.  She had a wonderful young lady there who as far as I could tell was the official Sophie Minder.  Now, Soph’s peers do a great job refocusing her, but she can be stubborn.  This helper was fantastic.
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spinning girls!

The mom didn’t blink at the idea that Soph came with an extra pull-up or lidded cup.  She didn’t have a look of anxiety on her face when I told them to have fun and headed for the door.  She was unconcerned and ready.

I’ll say it again.  I dropped Sophie off at her friend’s birthday party without a trace of anxiety, knowing she was in loving hands with people who accept her as she is.  The adult in this scenario made arrangements ON HER OWN to be able to make this happen.  It couldn’t have felt more natural.

THIS is why we believe in inclusion.  It’s not about academics alone.  It’s about building a community where everyone belongs AS THEY ARE inside and outside of school!  Sophie's friends have embraced her for as long as I can remember, but folks, she's got multiple generations on her side and it is AMAZING!

Tuesday, April 8, 2014

Thursday, December 5, 2013

Bionic Woman

continued from part 2, HERE.

I did my due diligence, believe me.  Spinal surgery isn't something you jump into just because one or two specialists tell you to.  The first neurosurgeon I met with impressed me.  Kind, patient, thorough and smart he instilled confidence as he explained my options.  Despite having done my homework on the two surgical approaches, I learned quite a bit from him.  He did a series of neuro tests and we discovered that my walking had been altered, a fact I hadn't noticed.  It's strange how we compensate without realizing it.  He asked me to do the field sobriety test that police use, walking heel to toe in a straight line.  I flunked as I could not take one step without falling over.  I admit, it jarred me.

The pain in my neck, shoulders, and left arm had continued to increase daily and my right arm and hand is now symptomatic.  Although I hated to do it, I had finally accepted that I could no longer work and went on medical leave.  Though I had tried a long list of medications, I had declined pain killers any stronger than Ibuprofen, wine, and muscle relaxers.  Something about failing the walking test and the potential permanence of my condition led me to accept the neurosurgeon's suggestion that I try a nerve pain killer as well as a narcotic pain medication.  The good doctor ordered additional tests including a C-spine CT and X-rays.  In the meantime I continued to seek additional opinions.

Research kept pointing me towards Jefferson University.  Still, I met with another neurosurgeon that my neurologist had recommended.  He was very pleasant but was ruled out almost immediately as his medical group was not authorized to perform the type of surgery I was hoping for.  In most cases like mine, the bulging disc is removed and replaced with a bone graft either taken from the patient's own body, typically the hip, or from a cadaver donor.  The vertebrae above and below are fused with a plate and screws. This limits mobility of the neck.  Also, just as with my congenital partial fusion of C5/C6, the added stress on the bones above and below the fusion will begin to degenerate.  Additional surgeries are likely.  The other option and the one I prefer is an artificial disc replacement.  Just as with the fusion surgery, the bulging disc is removed.  Then a metal plate is secured to the bones above and below with a plastic ball in the middle creating a ball bearing.  Mobility is much greater and the stress on the bones above and below is not a concern.

This doctor agreed that artificial disc replacement was a good alternative and he began to think out loud of colleagues he could refer me to.  The first place he mentioned was Jeff (Jefferson).  I told him I was aware of Dr. Heller at Jefferson and his response sealed the deal.  "I couldn't be in better hands," he said.  He couldn't be happier that I would be with Josh, his good friend.  Dr. Joshua Heller was the first opinion I had sought.  Happy with the ringing endorsement, I was relieved to have made my decision.  Next was the CT and X-rays.

I've taken my meds as instructed, though they don't really make a dent in the pain.  The zapping electric shock in my hands has been unrelenting.  I constantly drop things due to weakness.  Simple tasks like washing my hands or buttoning buttons are difficult and increase the sensation. The meds have, however delivered their promise of weight gain as a side effect.  I feel like a hose has been plugged into my belly button as I've blown up at an alarming rate.  My face is as round as a cherry tomato.  My eating hasn't changed and I actually crave salad, but I am not able to move around much.  I've also developed twitches that occur while awake or asleep.  I get woken often by them and also by my jaw opening and slamming shut, sometimes catching my tongue to the point of biting into it.  This is likely caused by the spinal cord damage, almost like I'm getting erroneous signals from a fried wire.  So, I've done what anyone would do in my position.  I've watched all of the episodes of The Good Wife (prior to this season) and I'm on the last season of Breaking Bad on Netflix.

Mark is my Prince Charming.  He's everything to everyone in our little family, mostly without complaint though he has episodes of what he calls "Rage Cleaning."  I am grateful that he is on sabbatical this semester and able to take over for our family.  He not only shops, cooks, cleans, and chauffeurs the family, but he also spent most of Thanksgiving decorating for Christmas.  The outside of the house can be seen for miles and it is fabulous.

At my second appointment with my neurosurgeon, he ordered more X-rays as he needed additional views with my neck in different positions to gauge stability, so I headed back to radiology.  While waiting for him to decide if I would qualify for disc replacement versus fusion, I watched a few videos of the surgery on youtube.  Mark can't stand the site of a needle, so he thinks I've completely lost it.  I used to be squeamish, but having three kids and being a fan of horror films and zombie shows has desensitized me.  At one point I caught myself thinking of tandoori BBQ chicken while watching a disc being removed and it was my own thought that grossed me out.

My mentor, friend, and boss Diane picked me up at 7:15 am and took me to my pre-op appointment on Tuesday so that Mark could get the kids off to school.  At noon my friend Lauren brought me lunch and stayed with me through the many questions, poking, and proding.  These are the kind of Wonder Women that I draw to me.  I spent all day getting my blood pressure checked (3 times), giving my health history, list of allergies and medications, an EKG, a blood draw, and conversation with an anesthesiologist.  I even had a chest X-ray and I swear in the dark I emit a soft glow.

Mark's mom will be here for two weeks, thank the lord, though getting here has been it's own challenge due to fog.  Yesterday she had flight delays and cancellations, arriving in Chicago last night only to have her last leg cancelled.  She's in the air as I type.  She too is Wonder Woman.

My health insurance approved the surgery with a modest co-pay and the good doctor approved the artificial replacement.  There is a chance that once he gets a closer look, he may decide fusion is necessary, but he is prepared for it.  I have been carrying the CDs of the MRI, CT, X-rays and reports in my purse along with my health care declaration and living will for weeks, just in case.  My bag is packed with a change of clothes and toiletries.  I haven't eaten since midnight when I wolfed down a salad and a Little Debbie Christmas tree cake (don't judge) and I stopped drinking at 8:30 this morning.  I'm ready to go.

Recently we have been given hope that I will, in time regain what I have lost.  There is no guarantee but the dismal prognosis I had been originally given isn't a guarantee either.  It makes sense I suppose to prepare patients for the possibility of permanent damage but I don't accept that.  My surgery is at 12:30pm Eastern time today, Thursday, December 5th.  It is expected to take 3-4 hours and I will stay for one or 2 nights.  Mark will be joined at Jeff by one of our pastors and his mom and will provide updates through my ReJenerationS twitter account and on fb.  In addition to prayers and good thoughts, I have another request.  I'd like to keep Mark busy and laughing all day.  Either on this post in comments or on fb, please post jokes, funny stories, and videos.  I want him bombarded and distracted while I'm getting fixed up.

I'm not particularly scared.  I just want this over.  I've got friends and family all over the globe lifting me up.  I'm in great hands at Jeff.  I've got the good Lord on my side and plenty of work left to do on this earth.  So, me and my brand new Wonder Woman uniform (pajama pants, t-shirt and robe) are headed out the door.  After all nothing else would do.