Time is the most precious thing in the world

The other morning, my 9 year old son told me that “Time was the most precious thing in the world”.

Time.

Yes, you read that correctly. He’s 9.

He had this revelation over night and was explaining to me what his plans for the future were. He wanted to grow up and work in Security and give his own time to others, because giving your time to others is very special.  It’s a very kind thing to do, right Mom?

Yes, son, it is.  And you are right. Time is very precious indeed.  Precious because it cannot be bought or controlled; it just soldiers on whether we want it to or not.  Time is what we need to make memories and relationships.  Time is the key to feeling supported, comforted and loved by those who are important to us.

If you think that spending time with loved ones isn’t the key to a successful relationship, please talk to someone who has lost a loved one.  A widow, or widower.  A grieving parent.  An orphan. They would happily trade all of their worldly possessions for more time with their loved one.

Am I surprised that my 9 year old understands this?  Not really.  This is the same kid who offered to donate some of his bone marrow (soldiers) to save his older brothers life – without hesitation.  He is selfless, courageous and kind, every single day. He understands that life is hard and people have good days and bad.  He recognizes that he can help bring a smile to their day by doing something, even something simple.  He wants to change the world!

Every day he inspires me to be a better person.  To take a moment to listen to the world, to let it in.  To give my time to others when I can.  He inspires me to keep dreaming, and to keep trying to make the most of everyday.

So, my resolution for 2019, and every year to come, will be to make time for the people in my life.  To take time to truly listen to the words they say and the ones they bury deep.  To see them as they are, and respect them for that.  To take a moment to exhale and take a deep breath; to count my blessings.  And as cliché as it sounds, to be the change I want to see in this world.

May 2019 find you all in good company, surrounded by those who love and support you.  May your year be filled with adventure, laughter and good health.  Cheers to the amazingly perfect days, and the days that strengthen us!

Go. Be Awesome!

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D-Day Anniversary – 5 years

laceymountainI can almost feel the sunshine on my face as it was the day we heard those dreaded words.  I can almost remember every bite of the hot dog we had from the street vendor at the foot of the hospital steps.  I can hear the doctor’s voice, raspy and matter-of-fact, telling me that our child (#2) had a Stat 1 Mutation and the likely hood of survival into his teen years was nil.

Today marked 5 years since that day.  At the time, 5 years seemed like a lifetime away.  I’m not sure what I imagined would be happening on this day 5 years later, but I’m pretty sure I thought my life would never seem the same.  No more joy, no laughter, no hope.  But, luckily, a lot can happen if you give it time.

While most of the day I tried to keep the memories at bay and focus on the present and how well he looks, there were moments that made me pause and breathe.

Today, he dressed up in his nice clothes and headed to the Church supper to help.  He was so excited to be able to be a helper and smiled all day long.  He was pleasant, helpful, courteous and sociable.  He didn’t shy away from the work and jumped in wherever he could.  Today, he was spreading joy, love and hope and changing the world one smile at a time.

Today, I spent the afternoon with #1 and #4 at a sporting banquet, celebrating #1’s achievements in her sport.  I listened to her coach proudly speak about all the skaters in the club and how much progress they have all made this year and felt proud that we are a part of such an amazing organization.  I enjoyed the sweet musical talent of #4 who took it upon himself to replace the radio (which was broken anyway).  I was blessed to have them help me with the groceries without complaint.

5 years ago life threw us a curve ball and literally knocked us down.  I spent the day worried, then traumatized and fighting back the tears.  I cried, I questioned what I had heard, I panicked, I tried to still be present for the kid who had no idea what was happening.  I had the most difficult conversations with people I love about someone they love too.  I think at some point I went into auto-pilot, survival mode because the whole day seemed to last forever and yet, eventually it came to an end just like every other day.

But today, I was able to take the day at a nice. leisurely pace.  Nothing but the ordinary adventures of a Mom of 4.  I am so blessed to have days like today.  Especially when life decides to knock us down again I will need something replay in my mind to set my mind at ease. It is difficult to keep the intense emotions (mentioned above) from taking over the present.  I am an emotional person and memories bring with them the real emotions that I felt during the original experience. Throughout the day, I had to pause, breathe and focus on the here and now-the tiny blessings I was surrounded by and not the memory of a day I wish had never happened.  I was at war with myself all day, wanting to just be normal and yet, wanting to curl up in my bed and cry – hide from the world and the obstacles that the day brought us.  Today I was not the best me, but I was happy that I had some control over how I reacted to it.  I am SO happy, thankful and blessed that my littles are all growing into amazing, kind and strong young people.

So, I hope your May 6 was everything you could ask for and more. I hope you saw the blessings in the little things and were grateful for those who support and love you.  I hope life didn’t surprise you with a challenge today, and if it did, I hope you had the strength to face it.

If not, there is always tomorrow.

Here’s to many more ‘ordinary’ May the 6th in our future!!

 

The Unspoken Question

127903Why?
Why did this obstacle land on our doorsteps?

Why are these challenges happening in our lives?

Sometimes the answers aren’t as clears as black on white.  They don’t come with reference books filled with thousands of supporting documents.  They don`t include a reason.
Sometimes the WHY isn’t important.

Sometimes the not knowing the Why can drive us nuts.
While we tend to avoid that question, it is never far from our minds.  We keep it safely tucked away in a clear box with a lock and key.  We can see it, but usually refuse to open the case and give it air.  Fore when it breathes, it sucks its breath right out of you.
526793.JPEGSome obstacles, some challenges and some traumas can answer the question without much issue.  In fact, in some instances, resolving the unspoken question can go a long way to preventing further issues as well as providing closure for the families.
But for those of us who are dealing with medical conditions for ourselves or our loved ones, getting an answer to the unspoken question isn’t going to happen.  So we try to keep that question locked away.

I have met many people on similar journeys and while all agree that the frustration lies in the unspoken question, they each have different perspectives with regards to its response.
Some believe that it is something that has happened and they should just accept it.
Some believe it is an effect of something from their life.
Some believe it is out of their hands and in the hands of a larger power.
Some believe these obstacles happen to only those who can handle them.
Some believe the obstacles are tests.tumblr_nyoio9lKZl1qha52vo1_500
I`m not sure what I believe.  I keep that unspoken question locked tightly away in the box, depriving it of the air it needs to exist.  The likely hood of us getting an answer to it is very slim.  Nearly non-existent.  So why would I let it eat away at what little resolve I have?
Early on, I didn`t believe people when they told me that we were handed these challenges because someone higher up thought we could handle them.  That didn’t seem like a fair assessment.

Now, there are days when I can see what they meant.  There are obstacles that we overcame that I know others could not.  But that doesn`t make this any more fair.

But we all know that life isn`t fair.  And it can be over in a split second.

So, my advice to you, from my five years on this journey, is to keep the unspoken question tucked away in a case.  Lock it and hide the key.  The why isn’t important.  What is important is How you are going to handle it.  You can choose to let it break you.  Or you can choose to let it make you stronger.  You can choose to fight.  You can choose to spread hope and kindness.  You can choose to make everyday count, with everyone – not just those on borrowed time.
dont-rush-when-the-time-is-right-it-will-happen-6884616Take your time. Make sure you live in the moment.  Make sure you feel the emotions and experience them.  Keep your eyes open for signs and opportunities.  Recognize growth and progress no matter how small.  Make sure you find closure to your unspoken question in a way that works for you.  The less focus you give it, the less tempted it will be to break from its box and eat you alive.
You can do this!  You have the key!

Go. Be Awesome!

 

 

The Loaded Question

I’m talking about that one question that all parents with chronically ill children sort of dread – How is your child doing?

I know.  You are likely wondering why I would call that simple question the Loaded Question, so let me explain.

‘How is your child doing’ is often asked as a way to make conversation.  People will ask it because that is the polite thing to do. Sometimes, they will ask because they honestly want to know.

But the truth is, that for every person that asks us this question with keen interest, there are equal amounts who ask but don`t really wish to know the answer.  They ask out of social protocol with no intent or desire to listen to the reply.  Some may want to listen, should the answer be short and sweet – like He/She is doing very well!.  But should the answer take more time to explain then reciting your morning work out schedule, they don`t want to know.

And that’s okay.  We don`t expect every person we meet or encounter to care or comprehend our situation.

But sometimes we can`t tell if you really want to know what is happening with our child or if you are being polite.  So we apologize if you have asked, hoping for a short answer and gotten a long explanation.  We also apologize if you were looking for the long explanation and we scooted around it.  We are not good at this game.  Sometimes we don’t want to play at all, so we say fine to avoid all the awkward body language that is sure to follow.

Sigh.

So. How IS my child doing?

Well, heres the short answer.  Hes fine.  We`re fine.

But here’s the longer version at the moment:  The Stat 1 Mutation was considered cured and we are in the clear with regards to that diagnosis.  However, we are now onto new issues - Chronic Kidney Disease and other emotional health issues.  The treatment for the kidney disease has been working which is great news, but it has put more restrictions on his diet and his environment and slowed his progress with regards to re-vaccination.  He is still on numerous medications and makes monthly visits to the Medical Day unit at the nearest children's hospital for IVIG treatment.

His life does not resemble normal.  Not even close.

(While I said that was the long version, it too, was abbreviated)

What is the point here?

Well, I wanted to share my perspective on this simple question.  The loaded question.  Patients who have rare diseases, cancer, etc, have stories that will carry on throughout years of treatment and growth.  So long as the patient lives, their story will ever evolve.  They will not have a moment when they can truly say he or she is fine and mean that.  To say fine, would imply that their health, physically and emotionally is good.  That the risk of relapse is very low (or non-existent).  That life carries on with its expected cadence.

If you are going to ask one of these patients how they are doing, be prepared to listen to a bit of their journey.  Be willing to lend your ear for a moment and listen to their reply.  The simple act of listening is improving their emotional health by helping them to feel supported, and will translate into a stronger, more vibrant patient. By listening you are making a difference in their lives.

But if you don’t want to hear about the gruesome details, or the trials and tribulations that these patients are going through, that is okay too.  Make conversation about other things.  Keep the topic light.  Smile.  Be a good distraction from their day.  They (we) need that just as much.

Just recognize that the loaded question is not easy for us to answer.  We aren’t really sure if you are asking because you want to know, or if you are trying to be nice.  Sometimes we find ourselves still in the midst of chaos and cannot put into words how things are going.  This question becomes so much more complicated than you intend.

Just a my thoughts.

Go.  Be Awesome. That’s much better than FINE!!!

 

To the Mom’s Going Through Their Worse Nightmare – You Can Do This

You can do this!

Yes you can.  No matter the obstacle, you can overcome it.

How do I know?  Because I have seen many Mom’s before you do just that.  Many amazing, strong, intelligent, resourceful, determined Moms and they all faced insurmountable mountains. They are my heroines.

But they are real too. I have seen them on their darkest days. I have seem them near their breaking points.  I have tried to hug away their pain.  They are just like you and me. So, if they can endure all the obstacles they have and keep getting up in the morning, then you can to. Yup.  You can.  One day, one moment, at a time.

How did they do it?  I don’t know.  I’m not sure they know either.  I know that they, like me, probably went into survival mode and did what they had to do to survive. Days blurred into months, while some moments are permanently on slow10308224_10151979092810836_3126366297088934273_n-motion replay in our minds.  We  keep fighting tooth and nail for our child(ren) and you will too.  We continue to hope, pray and will (through shear determination), our child(ren) better. And you will too.

What you need to know, is that we are all behind you.  We are here, holding you up, sending you strength to face the battles and courage to continue on.  We understand how difficult this is.  We get how unfair this is.  The many pieces of our hearts are breaking for you and the journey you are facing.  No matter how alone you feel, you are surrounded in spirit by thousands of other strong Moms just like you.

In closing, I want you to know how sorry I am that you are dealing with what you are. Life is very unfair and sometimes things just suck, plain and simple.  I wish that I could change your circumstances and give you back your previous life – before this new trauma/diagnosis or situation.  You are in my prayers, my heart and on my mind every day.  I send you strength and courage to keep getting up and getting dressed, so you can climb this mountain.  I hope that you find your inner strength and your inner warrior, and feel empowered when you do.  You should be very proud of the Mom you are as she has gotten you to this point – try not to forget how awesome you are.

Don’t let this situation be what defines you.  Decide how you are going to approach this and power onwards – that will be what defines you.  That is what will make you stronger.

Now go, and hug your child(ren).  Squeeze them tight and tell them you love them.  Be silly.  Be fun.  Be present.

Be Awesome.

You can do this!

Things I wish I Knew Before My Son’s Bone Marrow Transplant

Four years ago last November we began the journey with a Bone marrow Transplant.  Our son, then six, was diagnosed with a terminal immune deficiency condition known as a Stat 1 Mutation that gave him only years left to live.  A bone marrow transplant was his only option – but it had never been done before to treat his condition. But this journey hasn’t been the smoothest.  Here are a few things that I wish I knew, or better understood, before we headed down the road to a Bone Marrow Transplant.

  1.  It will be very long road to recovery.  VERY. LONG.  When the doctors tell you that you have to be patient, that it will take time for the immune system to rebuild – they are right.  It is difficult to process how long this could take before you begin, but try to remember that it takes a long time.
  2. It is one the most dangerous procedures to undergo. Rebuilding an immune system is dangerous because it takes time.  And while you are waiting for the new system to re-grow, you are at a high risk for infection. Imagine that your immune system is like an army, and you have just fired all of your soldiers.  Now you are waiting for new soldiers to take over but they have to multiply.  They can only do that at a certain speed.  Too quickly and the host’s body rejects the progress; too slow and the risk of infection gets higher.  Danger loomed in every person, every new item, every procedure that followed. Don’t be surprised if you find yourself becoming weary of public spaces because you don’t want to get sick. If you are sick, then you can’t visit your loved one.  Take care of yourself.
  3. Try to keep the patient moving, even a little bit, everyday. Keeping them up and on their feet on a regular basis could change their physical state as the recovery  progresses.  Hopefully avoiding the need for long-term physiotherapy.
  4. Find time daily (or at least every other day) to talk to family and friends either over the phone or via video chat.  Keeping in touch with the outside world is a good distraction, and will help the patient feel less isolated.
  5. Remember that your nurses are your advocates.  They are there for you, to bring the concerns of the patient to the medical team.  They are your first line of contact, a wealth of information and an abundant resource at your doorway.
  6. Ask lots of questions.  If you are not sure about a medication or a procedure, ask the nurses, research it on the internet, go to the hospital library.  Try to have an understanding of what is happening to your loved one, and keep note of how it went or how they reacted.  Especially with regards to medications.
  7. Remember to breath, eat, and take a moment to be alone.  While caring for a loved one going through a transplant, you will need to be healthy, alert and ready for any challenge.  If you aren’t eating, sleeping or resting your mind, you will wear out long before the end.
  8. It’s okay to freak out. Or cry. This is an emotional journey and one that will bring up many emotions.  It is okay to let them out. Find a quiet spot where you can take a few minutes to let them out.

Hang in there. You are not alone in your journey.  There are others like us out there who have been down this road too.  Search for Bone Marrow Transplant Survivor groups on the internet, look for us on Facebook or connect through the blogs.  Ask around for connections to others who have had similar conditions or treatments.  We are around and we are standing behind you silently sending you strength, courage and the confidence to move forward.

You can do this!

 

 

 

Two Dimes. A World of Strength.

Ever have a bad day?  Maybe just one of those days where every little thing seems to be out of place?  You find yourself overly forgetful, exceptionally clumsy, last in line or whatever little quirks make you wonder if the Universe is out to get you and you think “I have terrible luck.”

Then you go to get your morning coffee and after waiting an extra five minutes in a long line up, you reach the cashier only to find out that your coffee has been generously paid for by the previous customer.

A sign that the Universe isn’t out to get you.

Well, in our family those signs come in the form of tiny, silver coins.  Dimes. And they began making their appearance in late 1998 after the passing of my Maternal Grandfather, Hap.  Usually, the only person in our family who regularly sees these signs is my Mom.  So often that we fully expect her to tell us on almost a daily basis that she found a coin.

“It’s a sign from Heaven.” Someone told her.  And missing her dad, she welcomed the thought, embraced the hope and love that the simple sign brought her.  Easing some of her loneliness, reminding her of the love her father had for her, she picked up every coin she found and smiled.

Signs are different for every situation.  Some people see birds, or butterflies, others find their loved ones belongings where they shouldn’t be.  For us, it is dimes.

I never paid much attention to these dimes early on.  It just became this lucky thing that happened to my Mom.  We would laugh at how good her luck was – though she would lose every time she went to the casino and never won any draws she bought tickets for.  She once found a $50 bill in the Beer Store parking lot, but that was it.  Since then it has been coins.

Recently, my perspective has changed and so has my luck. While it still tends to be unlucky or non-existent, we have been keeping a closer eye on our blessings.  We have been trying to find the little bit of brightness everyday, because we need it to shine hope on tomorrow. Now we are noticing the little things, like tiny, silver coins whenever they appear.  However rarely they appear.

I have been finding them more often – not as often as my Mom, but more often than before.  Each time, I smile and think of Grandpa Hap and say a silent prayer of Thanks.  I like to believe that he is looking out for me, sending me a reminder to keep my chin up and put one foot in front of the other.  I take a deep breath, inhaling any strength and courage he may be sending me (and I’m sure he knew a thing or two about courage and strength being a WWII veteran) and then quietly tuck the dime in my pocket and keep moving forward.

Might seem a bit silly, but when you are searching for a flicker of hope, you embrace the little signs as they come.

A few days ago, two of my children found dimes at two separate locations on the very same day.

Two.

It was years before I found any, and they found two in one day!

Both equally thrilled.  Both embracing the moment with a smile and a slight pause. Both with a very real understanding of the need for hope, even during your most regular of days.

It was rewarding to see them accept the little signs of hope and welcome them with open arms; letting these little somethings become the wind at their backs, urging them forward to bravely overcome their challenges. It was rewarding, too, to see them go through the emotions and feel like there is someone else on their side – an angel perhaps, even just for a second.

To just be hopeful.

So, when you are having a day that is pushing you to your limits, keep an eye out for the tiny, silver coins or the birds or even rainbows.  They are out there, everyday, waiting for you to clear your mind, quiet your soul, and embrace their existence.  They are there whether you notice them or not.  Why not accept this and let that hopefulness be the wind at your back?  Why not make the choice to see the bright side of the situation? Leave your door open, invite Fate to come in, offer a seat to Fortune, and share a laugh with the Universe.  Allow the signs to represent something good; something positive. Remember that your loved ones are never far from your heart, connected by the intangible, unbreakable string, and still loving and supporting you as you continue on your path.  Let them be your guide. Let them give you strength.

Breathe.

Smile.

Move forward.

You’ve got this!

 

Rising Above the Guilt of Being Alive

20171017_191146This month we quietly celebrated #2’s Life Day anniversary – his fourth to be specific.  Life day is the anniversary of your transplant day – the day in which you receive the ultimate gift – the gift of life.  Previous Life Days have been celebrated in various ways; with the community, with family and with friends.  Our first anniversary was celebrated by getting out of the hospital after a year-long stay! This year we kept it low key and ordered take-out.

We always feel torn about how to handle this ‘special’ occasion.  It was the hospital staff who had said that other transplant families choose to celebrate this day like another birthday.  For us, the argument within lies with trying to balance the recipient and the donors roles, as well as the roles of the other two siblings.  How do you celebrate such a life-changing event for everyone by just recognizing one child (the recipient)?  Who gets to choose what you do to celebrate?  What is an appropriate way to celebrate?

And then, the survivors guilt kicks in and we begin thinking that we shouldn’t be celebrating at all.  Not after meeting so many amazing, strong and wonderful families who’s happy endings never came.  How do we shout out to the world that we are on our 4th anniversary when we know others who didn’t even get one?

Survivor’s guilt isn’t just about surviving something when others didn’t.  I feel it too.  As his Mom.  I feel guilty that we are still struggling with this journey, 4 years out, when others don’t get to.  I feel guilty sharing updates because no matter how good or bad, I compare to those who’s loved ones lives were cut short.  I feel guilty that I wasn’t a better person, one who reached out to these other families in their darkest times and offered some strength.

You see, when you are in the midst of the storm, struggling to keep yourself together, you find comfort in knowing that you are not alone.  You can find common ground with other families going through similar emotional turmoil and you band together.  You know it may not be a life-time friendship.  You realize that it could be fleeting.  But you also recognize the necessity of having a ‘person’ to talk to about all the medical stuff, emotional stuff and disease stuff that your other friends may not understand.  That makes those friendships an important part of the recovery.  But when they go home without their child, and your child is still trying to survive, you pull back.  Why?  Because your child is alive and theirs isn’t.  You don’t want to push.  You don’t want to be the reminder to them about everything they went through.

You feel guilty.

Because for once, you didn’t grasp the short straw.

Every year on our Life Day, we think of those families we have met on this journey and we send them strength and courage to keep moving forward.  However we choose to celebrate, somewhere in the background of our day is your child’s name and face.  To honor them all, each year, we try to do something kind for the greater good.  Something that will make the world a better place.

We don’t want to shout from the rooftops that our Life Day is here.  We want to use it as a reminder to be good people and do good things.  We want to throw a pebble into the pond of kindness and watch the ripples spread.

I’m not sure if this feeling will ever pass.  With each anniversary we are so grateful for all the memories that we made since the previous one.  We try to live in the present; not in the past and not worry about what is to come.  But those names will always have a lasting impact on our journey.  They keep us humble and determined to make the most of our days.

You never know when your number is up.

 

 

The Hiatus and the Nerve

A hiatus on here is a test of my nerve.  It is a break from the public expression of my particular take on our journey.  A few moments left unspoken, and quietly savored by us, tucked away in our memories of this period in our lives.

But for me, this silence ceases the healing process.  It is truly the test of my resolve, making me question my thought process, my decisions, and my worth.  It plugs the flow of words through my head, eventually clogging my conscious with a mishmash of language, preventing the natural flow of ideas and wisdom that is needed to make progress.

And it hasn’t been that I didn’t want to write anything.  Truly the opposite – I’ve had lots to say but almost too much to sort through and put into words.  Combine that with a broken computer screen, a course to finish and life to live – I just couldn’t align the planets to move my oceans.

A hiatus, is usually, a good reprieve from the norm. I think.  It is usually a good time to contemplate our choices and decisions and ask ourselves the difficult questions that we have been putting off.  Is this how I want to live?  Am I doing what I want to do?  Am I making the world a better place?  Am I happy?  Taking the time for self-reflection can go a long way to alleviate stress and improve moods.  It can provide insight.

A hiatus usually involves nerve.  I mean, you have to be brave and open-minded to take a hiatus and complete the act of self-reflection.  You have to have the nerves to handle the answers because they may not be pretty. For me, there have been days that put me on my last nerve, but I learned something on those dayslaceymountain too.  I learned that I have limits – that I cannot (like actually physically or mentally cannot) complete every task I put on my figurative list every morning.

So, after my hiatus, I have made some headway with how I will proceed from here.  I can still aim to do more but I am more cognizant of my abilities and my desires.  For me, not writing causes higher levels of stress and anxiety.  I need to write, regularly.  I need to put my words down on paper somewhere because that takes them out of my head and frees up space for productive thought.

Taking a hiatus every now and again is okay.  It will provide that change of routine that can reboot my creative centre and give me that feeling of ‘vacation’.  But I think this hiatus was much too long and I need to find the nerve to keep on going.  If not on here, then somewhere.  If not about our journey, then of life.

I don’t need nerves of steel to do that.  Writing it down is the easy part.

Living it can be the challenge.