THANK YOU!!!

On our first wave of Fundraising for BC Children’s Hospital, Naya and I sold out our 16 succulent plants on our first day!!!

We are so grateful!!!  Thank you everyone for supporting and for showing your love and support!

I’m having troubles finding my peace.  For the last 2 weeks I’ve been carrying a lot of pain in my body. And in my mind and heart. My child has recovered amazingly from surgery. I should be happy, over the moon. But I am in grief.

I don’t know how to let it go. It’s a daily battle… hour by hour. What’s the next thing that will make me feel better.  I can’t run forever…

Having 2 children is a struggle…. regardless if they are special needs or not.   I have a whole new level of respect for parents with 2+ kids. It’s HARD!  Like OMG!

But now that they are 3 and 6 yo, I am getting glimmers of freedom!  I’ve actually been able to take a shower without interruption!  Without little voices screaming “Mommy Mommy” every 5 seconds!

Recovering in the ICU. All went well.

So before I had my 2 angels I had a life.  As hard as it is for me to remember what I did with all that time, one thing I did was race.

I love to run. And its not something many people love to do….but I really do enjoy it. And after a 5 year break I ran my first race again!!!

10km uncertified – so 10.5k.  I was so nervous I was shaking.  And by the 8km mark I was in so much pain I wondered why I do this to myself.  The 10k mark came and went…and I swore and wondered where the heck the finish line was!  And then I rounded the corner and there is was… the black inflatable finish line…along with my little cheering squad singing “Go Mommy, Go Mommy, Go Go Go!!!”

It felt great to do something for me!  I hope the love of running is something I can instill in my girls.  Something they can enjoy doing too one day.  To see other people share your passion, a community of people who understand the runner’s high, and the runner’s pain.  =)  It was so worth it!!!

An update is overdue.  Surgery #23 happened.

3 pockets of fluid.  2 ventricles and 1 big cyst. Right ventricle had collapsed around the catheter….blocking all the drainage holes, like a balloon collapsing around a straw.  Meanwhile the left ventricle and the cyst kept getting bigger and bigger.

Surgery went well.  They ended up moving the catheter from vertical position BACK to horizontal.  What Adrian and I had feared would happen when they moved it end of December.  But, like every surgery, we have learned each surgery ends up being a bit of a crap shoot.  We never know if the shunt will end up being in an optimal position or not.

Anyway… immediately we noticed improvements.  Within 24hours, she was colouring better than she’d ever colour before.  Aside from the AWEFUL seizure meds…she was doing well.  Thank goodness.  Adrian and I….we took a big breathe.

Friday she didn’t eat at school.  Saturday morning she said her tummy hurt and she threw up her water.  But she was acting fine.  We thought it was a stomach bug.

Fast forward to Tuesday.  Children’s Hospital emergency.  Begged for an MRI instead of a CT scan.  Emergency doctor was very good. Thank goodness.

MRI shows a problem.  Cyst that was only 3cm in diameter a few months ago is now huge.  Like HUGE.  So big that Neurosurgery is amazed she has compensated so well.  So big that they are concerned about brain damage and they are going to do surgery tonight.

I am numb.  I am home taking care of Teya.  Adrian is at the hospital.  I wish I could be there to hug my baby.  but there is nothing I can do.

And now I hold my breathe…. feeling helpless….hoping and praying all goes well.

Our wedding…

For many many years I was single.  Longer than the average I think.  Didn’t meet Adrian until my early thirties…at the Roxy no less…(LOL!)  After I had already been engaged once and had a few long term relationships.  Looking back, I’m so glad I didn’t walk down the aisle the first time…and I didn’t settle with all the others.

Did I know right away?  No, I deleted his number and expected not the hear from him again.  First date was a disaster…he was 45minutes late!!!!  But it was  different than all the other relationships….Everything was so easy!  There was no drama…no awkward moments.  We have similar morales…and similar values.  Of course I wondered a few times if this was it…but I felt like it was it. Happy Wife, Happy Life….the best thing in the world was meeting him that night….he completes me.  ❤

Life is a balance.  You can’t win them all.  Adrian is my rock.  And with him, I always feel like everything will be ok.  I realize that without him, I couldnt do this alone…I would never have been able to keep it together thru all of Naya’s health problems.  So I guess as the saying goes…. everything happens for a reason.

Unfortunately tho….our wedding anniversary is also the anniversary of Naya’s first shunt.  We will never forget…our one year anniversary dinner was the worst one ever.  Our child in surgery….and us, eating at Earl’s Restaurant for our anniversary dinner, waiting for the Neurosurgery to call us to say surgery was over.

Surgeries on our anniversary, on Naya’s first birthday, on Halloween…. yeah, too many to list and so many happy moments over shadowed.  But trying to stay positive…and remembering life is still pretty darn good.

When we found out Naya had a brain bleed and hydrocephalus I had a really hard time with it.

As great as our NICU was, no one really took the time to explain to us what brain hemorrhage or hydrocephalus meant.   I mean I knew what the text book definition was, but what did it mean for us in the real world I had no idea.

I pictured my child in a wheelchair, void of intellectual capabilities.  I was angry, devastated.  and heartbroken.

It took me a long time to mourn what I thought my child would have been like had she been born at full term.  It hurt beyond belief.  It was a constant state of despair.  To have what parents fear the most happen to us.  I can’t even begin to describe the pain.

Adrian accepted it much quicker than I did.  And I think for the most part I’ve block out a lot of the emotions.  But I do remember thinking ‘What did I do to deserve this?’  I prayed and screamed.  Cried…and cried…..and begged.  And the surgeries kept coming….

I can’t say when it happened…I guess it was a gradual process, but eventually I accepted it.  I would say probably around the 2-3 year mark.  Or even later maybe.  I began to realize that despite everything, Naya was Naya.  She smiled….and showed us love.  It took her 2 years but she finally learned to walk….and at 3 years she finally started to eat solid food.  I began to see the light….I began to see her light.  =)