Tell me what it is you want to do with your one wild and precious life? -mary oliver

Wednesday, September 28, 2011

The Lives We Touch

We've all been there. That overwhelming, knot, panic feeling that begins swirling in the pit of your stomach, then rises from the depths until the choking sensation appears with every activity, have-to's, and meetings that come with daily life.  It is at that moment I come to my blogosphere of happiness, therapy, and peace when I read about others' joys, celebrations, and glass is half-full mentality.  Today, I'm at that point of panic with work and family deadlines looming in the week ahead.  It is here I remember how we touch lives without truly knowing the impact we have. 
Last week in my class of treasures, I read the book Lilly's Purple Plastic Purse by Kevin Henkes.  An engaging book that shares the celebrations of one, tiny mouse and her way of feeling special.  After recess, a petite, brown-haired, sprite made me my very own Paper Pink Purse, inscribed with her name.  I celebrated the connection, and rocked that arm-candy as if it were made by Mr. Coach himself.  When I walked into the office to share, my principal said, "Shelly, I need to tell you a story.  Last year, L came in March from India and didn't speak any English.  In fact, she wrote a different child's name on her every paper.  She didn't have any knowledge of what her name looked like in English.  Now, she is writing her name and speaking English."  Celebrations come in all shapes and forms, even a Pink Paper Purse, that is honored on my white board art gallery.
Last evening, I received an email from a girl I taught 5 years ago.  We connected on an entirely different plane.  She began writing me letters through the year, even though she seemed meek and wanted to fly under the radar.  She wrote me about the death of her grandmother, the move that would take her family across the country, and we had a traveling journal between her and I that year.  On her last day, I wrote my last letter and gave her my home email.  As with all correspondence, the emails became less frequent as our different journeys took different paths.  One night, she found that notebook, saw my email address, and wrote me a letter.  Red Threads  connect us all, they may tangle and weave but never break.
This space began as a documentation of our family life, then our journey to Sarah, and now it's a place to celebrate the big and small moments of life.  I never thought many would read it besides family.  Every so often, a friend or acquaintance stops to ask me a question, or tell me they read my thoughts the other day.  So it's with my words I can make a difference for someone.

I may never know the difference, the impact I make on every life I touch.  But, daily I try to be present with the moments.  I fail often, when the pressure of day to day life grabs hold.  But, tomorrow's a new day and the sun will shine again.
 We decided to  make some changes in our home.  More time for connection and I'm seeing the positives already.  Austin is playing Bookworm (a making words game) on his DS.
  Addy is engrossed in a new series and our library adventure in the rain tonight ensured she had the next book, along with another series I think she will like.

 Sarah is finally enjoying the 30 minute Signing Time videos and moving her hands along with Rachel!  Hurray, Hurray, Hurray!  She's been given her first invitation to a friend birthday party on Saturday.  What a proud moment for this mama when I picked up her mail from her mailbox and saw the invitation.  I can hardly wait myself!
 And it's time to figure out our Halloween Costume for this year.  We're starting early, so the online stores don't run out.  Our 8pm hours are filled with games of Go Fish, Dominoes, and math games.
So change is good!
Shifting Perspectives:  A Photo Exhibit
Now in Central Ohio, sharing uplifting photos of individuals with Down syndrome in daily life.
Check out the article:

Another avenue of making a difference.
Life's an hourglass.  You can watch the sands of time flow through, or you can be out there living every moment to the fullest.  It's a choice, your choice.   

What a wonderful, wild precious life I've been given!

Monday, September 26, 2011

Our Weekend

It began Friday evening, with a divide and conquer team effort for Andy and I.  After school, I picked up Sarah and made an appearance at my school event, and then met Andy and the kids for dinner.  He's been fighting a cold, so we were looking forward to a hibernating Saturday. 

Sarah was raring to go at 6am on a Saturday.  To my dismay, I could not get her back to sleep and so I was up pretty early.  After a late breakfast and lunch, I laid her down for a nap and Andy was trying to sleep as well.  She woke up writhing in pain.  After I changed her and got her settled down, she woke up screaming and pushing on the lower quadrant of her abdomen.  This wasn't normal, so Andy drove her to Children's Close to Home to be checked out. 

An hour later, he's calling me while driving downtown(where I was earlier that week) to the ER because she needed more tests.  And since cell phones do not work in hospitals, I had to rely on text messages from him.

At one point, a resident told Andy her intestines are all knotted together and my mind was going to the "nth" degree, making plans for my kids to spend the night at my friends.  From the sound of the things,  she was going to be admitted.

My mind was foreshadowing what we would encounter later that evening.  I was waiting, bags were packed, I had a plan for the next two days, and knew we would get through whatever we would face.  I waited, patiently, for the next text message from him.  I googled with information that I did have, and my family was praying. 

Then, a text message later, she's severely constipated (I know, TMI) and will be coming home shortly.  How can you go from knots to constipation in a couple of hours?    After 7 hours away, an IV stick, labs drawn, x-rays, and sticks, it was confirmed she needs to be on miralax daily.  When they got home( minus a token escapade again), Andy could hardly speak from his cold, ate a quick dinner, and then headed to the airport to pick up his parents at 11:30pm:(  From what I can gather, an over-zealous resident didn't feel her abdomen and the attendant was the one who caught it.

So, Sunday we never left the house, vegged, and caught ourselves up for the week ahead.  At least now, everyone is on the mend.  Life is good!

We did learn tonight that there's a mild abnormality in her neck and she's restricted from activities like trampoline (which she loves), tumbling and gymnastics until the next x-ray in 6-12 months.  And so our future Mary Lou Retton may need to find another avenue to release her energy.  Still, our glass is half-full.  We're smiling, loving every moment, and cherishing those special times,

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

Tuesday, September 20, 2011

Tomorrow's A New Day

 This morning, I packed the stroller in the car, the doctors' orders for Sarah's tests, and printed off directions for the hospital downtown. (the third time because I keep hoping not to have to go down there.)  My sub plans were ready and my morning went flawless.

Once I left school, I realized I forgot some Sarah snacks for the inevitable waiting that will take place in the doctor's office once we arrive.  After my Starbucks run, I stopped in Wal-greens to pick up something to keep her occupied.  A few for her Mama, too.

Hey, they were on sale!  Next stop, I picked up Sarah in different clothes than I brought her in.  She got wet on the playground and needed to be changed.  In the car, she went and I prayed she would sleep the drive downtown.  She's unbearable without a nap!  Looking back, I saw this and was thanking the heavens.  Hindsight, the mere catnap would not be enough for the foreshadowing of events to come.
Now, driving downtown is measured a close second to going to the dentist in my world.  I don't do it very often, I'm easily misguided in directions, and I get freaked out in all that traffic.  But, mapquest was in my hands.

Then, I see my turn off is closed to get onto another highway.  In my head, I'm preparing a dissertation to the doctor once I see her about how she will need to see me in another location or I'll find another doctor!  Finally, a thankful sign I see as the bright orange detour leads me in the direction I'm headed.  Off I go, and I find my way to the hospital.

Next trial is navigating in a parking garage, trying to find a spot.  Another check mark in my day is going fine.  I wake Sarah up and we roll on in.  We were early, ( one of my mantras), and so I tried to get her in for the x-ray beforehand.  The paperwork was complete, but the secretary didn't want me to miss my appointment, so she'd hold it for us until we came back.

Up two floors and I walked into an office of wall-to-wall adults and children, with screaming kids all around.  I signed us in and Sarah's holding up well.  We wait and wait.  Fifteen minutes later, I'm called up to the desk and find out we were to be at another location.  I can hardly hear what the attendant is saying. They're trying to help me reschedule, but computer issues were in full-bloom and the screaming in the office was more than I could take.  Finally, a rescheduled appointment later and we're on our way downstairs. 

We waited almost an hour for an x-ray and she entertained herself by reading to the other patients, making sure to show them the pictures like her teachers do!  She was amazing standing still for the x-ray and ekg.  Next stop, home.

But, oh, the parking garage token situation.  I needed to get a token from the machine, who last time ate up more dollars than it should.  Once again, it took another dollar.  So, I asked the information desk how to get a token and she pointed me to the same machine that took my money. A few tries and a token in my hand, I asked how to get back the money it took.  "Maam, you'll need to talk to somebody on first shift."

And I was done.  I got her in  the car, frantically tore open a box of Mike and Ikes, and dumped half in the backseat for her to eat while I drove.  At one point, she was dancing and laughing, while sticking her tongue out to the many cars that passed us by.  I'm sure the sugar high was part of her happy disposition.

I needed to stop in Target and the library before heading home, and after the library the winds of Sarah changed and the meltdown began in full force.  She was tired of sitting and being constrained and wanted everyone to hear of her day's misfortune.

Once we arrived home, I read her daily notes from school and it seems I sent in the wrong letter item for the week, need to complete a 32 page questionnaire, and she's on snack duty all next week.  And so the day went.  A few more meltdowns at dinner and  Sarah was sleeping by 6:30pm, put her jammies on at 7, and she's out for the night.
Tomorrow's another day ,folks, the sun will be shining, and Sarah will be smiling away.  Until then, I got some new crime dramas to enjoy on Tivo.

Sunday, September 18, 2011

Today, She Walked

Today, she walked.  Metaphorically speaking, because there was absolutely, positively no way I was going to let her walk free without constraints in the massive crowds celebrating the extra chromosome.  So, she stroller walked for those like her, and those who have yet graced this earth.
So much sisterly love in our home!

What a difference a year makes.  Last year, The Buddy Walk was later, colder, rainier, and dreary.  All we had of Sarah was a picture, but we walked in her name.

Today, the sun's rays cast a brilliant halo around Crew Stadium, and Sarah was with us in person.  Casting her bright halo of smiles for all around.

I'm so cute!!!
 One of our first stops after registration (No, we weren't organized to get a team going this year!) was to sign a pledge to end the R-word.
My brother, making the pledge.
.   Next up, we listened to the opening remarks and the emcee sing "When the Saints Go Marching In" with his jazzy trumpet.  During his rendition with lyrics dedicated to all the buddies out there walking today, my eyes welled up to see so many celebrating what other countries view as a lesser life. 

Then, we walked up and down the stadium for a mile.  We met families along the way, asking Sarah's age.  And the smiles abound in multitudes as we looked at our individuals for who they are.
Hmmm, what mischief should I get into next?

The Specs4Us had a booth at the walk, so Andy was able to get Sarah fitted for glasses and ordered her frames right there.  For those in the market for glasses for individuals with Ds, this company makes them to fit their unique faces.  We should have them by the end of the week, and our eye doctors will fit the original lenses to these frames.

There were games and bubbles, and the kids enjoyed the fun day.
Sister is seat-dancing, grooving to the music!

Girlfriend, is freakishly strong!!

The other day, I asked Addy and Austin what their favorite part of Sarah is... HER HUGS.  She gives the greatest, best hugs. 
Later that day, we had our small group from church over to celebrate her into our family.  We have tried so many times to get dates lined up, but today was the day.  They came and she performed her smiles and sassiness for all to see.

It was a busy day, but one filled with love, smiles, and celebration for lives filled with love.

We are so very blessed, and our days are filled with laughter and smiles.
Needing to kick back and take a rest!

May you all have a wonderful week.

Sunday, September 11, 2011

These Moments

To say the beginning of school is busy is an understatement.  Add multiple curriculum nights, the kids' activities beginning, Sarah's meetings, Andy's travel schedule, and these past weeks have been a blur.  Every year at this time, I do something that tells me I need to slow down.  One year, I scheduled a substitute for the wrong day.  This year, I took Addy to a meeting that wasn't until next week.  Poor Sarah is crashing in bed around 7:30pm from her new school schedule, but we are surviving.    So when Andy texted me the Thursday before Labor Day about a quick over-nighter up north, I jumped at the chance for all of us to get away.

The trip was one comedic error after another from the moment we started the journey until we arrived back home, but the kids enjoyed themselves and we left the cluttered home and work schedules behind for a brief 24 hours.

The weather was cold and rainy, but that did not stop our kids from living in the moment and celebrating our time together.

Sarah enjoyed her first time at an amusement park, and was thrilled when we found rides that she could go on.

Thank you to all who emailed me about a website for glasses that are designed specifically for kids with Ds.  The ones we ordered from the doctor do not stay on, so we'll most likely be ordering another pair.  We're learning:)
Sarah's adjustment to the preschool is wonderful.  I was able to meet her teachers at curriculum night and share her story.  They were apologetic about the red marker that was all over her clothes when she came home.   My response,"Clothes are replaceable.  Experiences aren't.  Everything is new and she loves to try and experiment!"

 On this day of remembering, my heart is filled with gratitude on so many levels.  I was teaching first grade ten years ago, Andy was in another state, and I was scared to bring a child into this world, where something like that could happen.

Until I heard the words, "If we live in the state of fear, we let them win."

One year later, Addy was born.
Seventeen months later, Austin came into the world.

Seven years later, we crossed the globe and lived in another country for seven weeks to bring home Sarah.

Our gifts, our blessings, our love.  Our glass is always half-full, knowing we are bountifully blessed with our family and friends.  May you all celebrate the gifts you've been given and be filled with gratitude, no matter how big or small.'s a wonderful thing.