Moving On

Pledge

Every December 31 the world stops to reflect on the year that has past before turning a fresh page. Resolutions are poured out as White Out on paper to correct the minor blemishes on our autobiographies.

For me, this past year has been bittersweet.  I've met goals I set for myself, one being this blog and its Facebook page. In this experiment, I have been humbled by the response by readers and likes.  I cannot thank you enough for following us on our new road, especially with Cole and his medical odyssey.

Unfortunately, we've been replaying the cycle of 'hurry up and wait' with fast testing and waiting for results that seem to take forever.  Sometimes I think we're stuck in the whirlpool with Scylla and may never make it back to Ithaca, then I realize, like Odysseus, we have already come quite far on our way back to a safe harbor.  Sharing this journey has given me an outlet for where I am as a mother, not just to be able to update, but to lighten my shoulders while letting some of the emotional weight flow through the keyboard.

Never in my life did I expect such a detour.  After all, I had achieved all I ever wanted: loving marriage, beautiful kids, and a wonderful career.  Nothing was going to stop me.  In the past year, I've learned to never underestimate the undertows of life's tides, they can snap your safety tether like a toothpick and carry you out to sea in the blink of an eye.  Treading water has also taught me that the change of scenery might be all you've been needing to blossom.

Which brings me to 2013.  This is our year.  It has been almost two years of testing, two years of waiting.  This has to be our year, one for answers.

In all of our uncertainty, I will not make a resolution, instead, I will pledge to keep embracing the path we've been led down, one day at a time.  On this long and winding road, I will not give up faith that our physicians will put this puzzle together sooner rather than later.  Every day I will stop to appreciate all that day has given.  As tough as this may be at times, I know others have it so much harder, and we are truly blessed.  Mostly importantly, I will be a pillar of strength for all our kids as they move through lessons they are far too young to know, especially for Cole, who needs to be braver than any two year old should ever have to be.  I may never be able to make this better, but I can be there for each of them, unconditionally, every step of the way.  This year will be a good one.  After all, thirteen is a lucky number.

While I will continue this blog, I have a couple other little writing projects to push forward in the months ahead.  As they emerge, I hope you will take some time to read and share, which will aid in  giving them wings to soar.

As we bid farewell to 2012, I must thank you again for reading.  I'm not sure if I would I call this little blog successful or not, but I know if one other zebra parent has stumbled upon this blog and has found a flicker of hope that they are not alone, then it has been.  If it has made some of you slow down, look around and appreciate what you have with your own children and within your lives, then it has.  Just like in my classroom, if I have taught you a lesson you can carry with you in your day or even your life, then I have met my objective.

I wish you all the very happiest New Year, may yours be filled with hope, love, and magical possibilities.

 

Fly

Light

Kids are fast asleep, little man in his crib, girls camping out beside the glow of the tree out here in the living room.  No better way to complete such a wonderful day.  To all of you, I wish you all the very merriest of Christmas seasons.

As we share our gifts of love with one another this year, let us not forget the gift we have been given on this day.

"For to us a child is born, to us a son is given, and the government will be on his shoulders.  And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."  Isaiah 9:6

The baby born on that night was a present to us all, sent from great love, to fill the world with hope.  This hope lives within each of us, an eternal flame.  Shadowy storms may make it flicker, but the sparks shared from those around us refuel and strengthen our flames, our faith.

We wait to open our Christmas cards until the end of each week.  This way, each of the kids have a bunch to open at once and display.  Today, one brought tears to my eyes.  The overwhelming warmth and love from a family, who are really just getting to know us, is truly beyond what I can explain.  Honestly, words aren't enough to express our gratitude for their kindness and generosity.  A thank you just doesn't seem to be enough, not just for them, but for all the understanding and kindness so many of you have given us.  

The gifts we have in love, support, and friendship from so many far surpass any "thing" that can be wrapped in a box under a tree.  To know that even when we have not been able to see many of you as an entire family or for long stretches of time, and you are all still always there for us, fills my heart.

I have all I could have ever wanted, and as I think about how the babe lying in a manger changed the world, bringing goodwill to all men, I smile.  In the darkness there is a great light, even so many years later, the star is bright.

We are so blessed, and I am beyond thankful.

Interesting

Just got an email from a physician - the expert does not know what to predict for Cole as he has never encountered a case where they have diagnosed nk cell dysfunction before a difficult infection was a catalyst finding the nk cell dysfunction.  Very interesting.  I am hoping in some way this could be a positive thing.

Puzzle

Last night we finally got a little bit of news.

A further study of Cole's nk cell function has returned from Houston.  As expected, the activity is abnormal, but in our physician's words it is beyond what they've been able to test for to this point.  It also varies from what the experts expect to observe with CD16 deficiency.  Due to this, they are planning further tests after the holiday.

Of course we are to be vigilant, taking all precautions with Cole, as we are once again wading in murky waters.

While I have been patient, I can't even explain how frustrating it to still not completely know what we are looking at again.  In my head, I feel like we should know.  How is it that a 100 piece puzzle can suddenly morph into one with 125 pieces?  How is it with so many medical breakthroughs every single day, after more than a year, we are still standing here with so many unanswered questions?  And, it isn't just us, it is the doctors as well.

The only answer I have is that there is some big reason for all of this.

At Cole's christening, as our priest welcomed our son into our parish he said that the world was now complete with the addition of the new baby.  Cole is one special little boy, he has changed our lives, and no matter how frustrating it is to wait for the unknown, he is the perfect completion to our family, and I believe he can change the world.

One piece of the puzzle at a time.

Miracle

Unfortunately as parents, many of us will experience dread creeping over us as we await news that appears overwhelmingly ominous.  I know firsthand what this is like, and hope those I know never have to wrap their hearts or minds around such irrevocable proclamations.

Regardless of where we have been, I still believe in miracles.  They happen every single day.  Yesterday's phone call is proof of that.  Another loved one struggling with cancer needed to go for a scan to see how it may be progressing.  Based on earlier scans and discussions with physicians, this family was prepared for the possibility of grim words.  Instead, the scan went better than they ever anticipated.  While they still need to talk with doctors regarding the findings, they did not expect the very clean scan that appeared.  Truly a miracle in this season of light.

I firmly believe in the power of prayers and love.  My heart could not be happier for this family, as they have received such a gift after one tremendous journey.

Often, I wish for the phone call, telling me they've made a mistake, or that I will wake up to find our road has been no more than a dream and I'm back in my normal routine.  Yet I know that I have been placed on this path for some reason, not yet understood, that some good must come from this.  While I've hoped for our miracle with Cole, I realize, he is one of our miracles, truly a gift from God, and that brings me great joy.

It is now a week before Christmas.  For me, take a minute from all the hustle and bustle, stop and really look at the miracles with which you are blessed.  It is so easy to dwell upon our struggles, but within there are slivers of awe that will take your breath away, that is where we should all focus.

Green Bean is 2!!!

Two years ago, we added one perfect little boy to our family. 

Happy birthday Cole!  You have taught me so much about life while adding tremendous love in our world.

I'm looking forward to watching you grow and all of our adventures to come. You are my special little buddy! 

I love you Green Bean! 

♥ Mommy

Speechless

Not so long ago, sharing my love of reading and writing was not just my job, but an avocation, the venue was my classroom.  My biggest concerns were how did I hook the kids who claimed they hated English class in the past, never experienced the joy of losing themselves in a book, or marveled over the power of their own words on paper.  It was my duty to find a niche for these kids, to show them just how their means of comprehension, communication, and analysis would have an impact on just about anything they chose to pursue in their futures.

Sometimes, this was a struggle, convincing a willful middle school student who believed they could not write that they really could, it just took time, patience, and practice.  In the end, the majority of these kids made progress with encouragement and the feeling that it was safe to make mistakes and try again.  After all, isn't that how we all learn?  

Even with encouragement, kids are still filled with their own worries.  While some worried about the recent argument with a friend, others, about making a team, some issues at home, others, bullying.  I cannot recall a student telling me they were afraid to come to class because someone may attack the school.   Not to say that there wasn't one with this concern, I just don't recall ever hearing it.

Now, I'm sure there are students who are thinking this, just as a parent I worry about the safety of my own children.  Don't get me wrong, I worried before, but more about how to help them if they were struggling either academically or socially and of course about what unknown pathogens might be hitching a ride to Cole via the girls.

Never in a million years would I think that in the nurturing cocoon of a school, where teachers feed curiosity, mentor skills, and develop dreams that anything so unspeakable would occur.  Yes, I know as a society we saw this happen in Columbine, but that was a high school, surely innocent children in elementary schools would never be scathed by such horror.  Sadly, this is no longer the case.

It seems something terrible is plaguing our society, poisoning our youth in their own playgrounds.  I want my children to experience the wonder of learning in their school, not anxiety.

While I may have one more worry as I send my kids off each morning, I trust the teachers and staff at their school to not only foster their minds and encourage them to aim higher, but to keep my babies feeling secure.  That's the kind of teacher I hope I have been for those passing through my doors, I only wish the same for my own kids.

For now, my heart breaks for the Sandy Hook families.  I pray for you, and hope for strength as the holiday season approaches.  There are no words for this unspeakable tragedy.  It makes me look at our own struggles, and as difficult as they may be, and know no matter what, I can still hug my children, tuck them in each night, and look forward to watching their futures unfold.  We are so blessed.

My heartfelt condolences to all of you in Newtown.          

Finding

The earlier the Christmas season stakes a claim in everything from stores, to commercials, and the radio, the harder it has seemed to find the holiday.  I have never struggled being or even finding "merry" the way I have this year.  Is it the lack of snow?  The craziness of everything else going on?  After a few friends have also mentioned their "Bah Humbug" emotions this year, I know it isn't just me.

When I was young, part of the wonder of Christmas was that the season seemed to magically appear after Thanksgiving then disappear as quickly as it came.  The brevity of all of it made it something special to savor.  Now it is as if Christmas is ever present after the fourth of July!

To find the true spirit of the season, I made a Christmas bag for my kids, an envelope for each day of the season with an activity for us to do together.  The key was the togetherness, not about wants or material things.  We've gone to a living nativity, we've made homemade ornaments and sung carols, even shopped for gifts for someone less fortunate than we are.

In explaining why we do for others, specifically a girl just a little older than the girls are themselves, I started to feel a twinge of the season.  As we did our next craft the girls talked about who they could give the finished products to, not just thinking of how they could use them themselves.  This is one of the best gifts I could receive, their understanding of giving and goodwill towards others.

All I thought the other night as I watched them paint was Linus as he told Charlie Brown "that's what Christmas is all about."

This morning, I have to say, I think that the "holly jollies" are creeping into my core a little more and more with every cookie I scoop.  Maybe I will even break out the Santa hat and make some cocoa!    

Messy

Life is messy, its roads are winding.  Still, I wouldn't change the curves, peaks, valleys or even the rest stops for the scenery has taken my breath away.

I never believed that time flew, in fact, ages ago, I swore I was never going to be old enough to get my driver's license.  Now in what seemed like a blink, my babies are 7, 5, and on the cusp of 2!  I just don't know where time goes.

Looking back on the unexpected journey of the past two years, I realize how much it has opened my eyes.  Not that I wasn't looking before, it's like I remembered to put my glasses on and savor the view more frequently.

Long and strange as this trip has been, the fragility of life and blunt reminder that time with my children is not infinite has made me reevaluate each day.  For a long time, I worried about what others thought about how we were raising our kids, and now, I don't.  I know we are doing the best we can with the hand we were dealt, one day at a time.  And that is ok.  

Never in a million years did I expect to find ourselves where we are today, but looking at our children, their smiles, I know we are doing something right.

I may not know what is around the next bend, and yes, sometimes that frightens me.  But just like in the past, we have continued moving forward, together as a family.  While I can't freeze this moment, it can engulf me, wrap me up, so when we turn back the clock to remember, I can say I was completely there, which has been the greatest lesson of this slippery, muddy road.  It might be dirty, but that's what the washing machine is for.     

Cake

Talk about cake!  In at 6:30 out by 8:15!  While getting tubes is still a surgery, it is almost crazy to me how quick and routine today was, a walk in the park, when many of our appointments eat entire days.

I can't say enough about the kindness of the nurses we have had at Children's Hospital for all of Cole's procedures.  Their kindness can warm a room, their compassion can fill your heart.  Today was no exception.

Knowing of Cole's exposure issues, our post-op nurse today was not only careful, but moved through the motions quickly so we could get out of dodge before the next round of patients were trudging onto the floor.  I can't even explain how deeply I appreciated this, as the petri dish of a hospital scares me more than any horror movie could.  Necessary risks are one thing, but lingering around beyond necessity where germs like to congregate is uncalled for.  Our nurse completely understood just from his chart, without a word from me.  Best part about today, she cared for him, and eased my worries with her attention and understanding.  To all the wonderful nurses out there, thank you.

Polar Express is just about over, and I need to keep my monkey calm today, so I am off to build one heck of a train track.  Hopefully this will capture his attention like it usually does until lunch.

Hugs to you all!
 

Sailing

Early start tomorrow.  Bag is packed and ready with things for the little man to do while he waits in his quarantined room.  Even got him a new Mater, a Doctor Mater.  It just seemed appropriate for another procedure at Children's.

This one is an easy one, tubes.  Between the girls, we've done this one three times already, so in that sense, we know what to expect.  Still, I'll feel better once Cole is out of the anesthesia.  As much as I dislike putting him under again, by doing so, we are able relieve one of his ailments, which, is a plus.

Looking forward to smooth sailing through surgery and a weekend full of snuggles.  Best medicine for both of us.

Diverged

Taking full advantage of the weather, Cole and I spent the morning walking through Chestnut Ridge.  While we were there, he fell asleep in the stroller, so I kept going.

Wandering off the path, crinkling through the leaves, I immediately thought of Frost.  The Road Not Taken, forever a metaphor for the routes I've traveled throughout my life echoed in my head.  "Two roads diverged in a yellow wood, and sorry I could not travel both."  Sort of like the fork between logic and emotion, both are inviting to travel, yet being one traveler, there is only one chance to choose the destination.

All day today, the poem has been whispering in my ear, echoing in my mind.  Thinking back on the  changing currents which have brought me to where I am today, I remembered I have and can endure any obstacle in my way to where I am headed.  So even with each hurdle, I know in the end, they merely make me stronger, make me push harder, making a difference.  This journey with Cole has been so different than with my girls, but has opened my eyes, seeing in much more vivid Technicolor, like Dorothy in Oz.

Regardless of the detours, I've always found my destination, even without a map for guidance.  And I know I will continue to find my way regardless if I follow logic or emotion since the roads I've taken have made all the difference.  

Quick

Quick update - all but one of Friday's tests came back late yesterday afternoon.  All were negative for exposures, which is a sigh of relief.   As long as the next test comes back the same we are a go for the tubes!

Let the stocking of the freezer meals for the weekend begin!  I am already excited for beef on weck soup after a long day at the hospital.

Latest

After two weeks home, Gwyn is finally able to return to school this morning. As excited as she is to go back, I must say, I am going to miss her being here during the day. From worksheets and crafting to decorating, we've kept ourselves rather busy this week.

Of course, we've also had our share of appointments to run to as well. In fact, Friday's was one we were not expecting. After noticing a few spots around Cole's chin that quickly exploded into hives on his cheek, immunology said they wanted to see him at the hospital. By the time they saw us, the spots had multiplied, spreading to his back. While they ran various tests, since we will not have any results until today at the earliest, Cole was started on a course of antivirals to combat any of the possible exposures he cannot fight.

 Unfortunately, all of these developments may need us to wait on this week's procedure.

In the meantime, we are still waiting for the other big results so we are able to determine if we turn left, right, or head straight on this path.  This never-ending uncertainty has been frustratingly long and one that it seems many people just don't understand.  The fact that doctors just can't wave the magic stethoscope as a remedy so he can be a normal kid is just reality at this point.  Then again, this is the season of miracles, where anything is possible.  Here's hoping for a call of good news today.