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Sunday, 26 December 2010

A little too "Rood" for some!

How beautiful are all of you out there??  Bless your good hearts and the loving connections you've made to give direct feedback regarding the Michael Rood video that I posted!  Those connections ranged anywhere from those of you who said "kuddos for sharing! That was a real eye opener" to "yikes, Rita, we are rather concerned for you!"  The full gamut was very intriguing and has left me questing for more answers!  And that's exactly why I shared what I did... can it stand on its own two legs?  If not, then it is weak and cannot bring glory to God!

So I am proud of you who took the courage to connect with me directly.  I know some of you were very hesitant for fear of offending but I say to you, anything you say will be taken in, weighed heavily, mulled over and applied to the growth process... no worries about offending!  Did my heart ache in some instances?  Yes.  I did ache especially for my darling mom who phoned because she was concerned about her Christmas gathering scheduled to be hosted in our home today and the possibility of compromising/offending our belief system... (bless your heart mom!  And if I could have crawled through that phone to hug you and reassure you of how much I love you, I would have!!).  In fact, we ended our phone conversation with her loving heart expressing "well, that's just one more ingredient to our family that we get to celebrate!  Maybe I'll buy you a menorah for Christmas!"

I love my family!

And another dear friend shared a book her father wrote on the history of Christmas and an open invitation to have tea with him and delve into candid discussion on the topic!  Given his twenty years of field research in this area, I am really intrigued by this opportunity!! 

So bottom line, there is a part of me that longs to apologize for the harshness of Michael Rood's approach to the information to those of you out there who were offended.  I was so hopeful that people would look past the messenger to see if the message itself, the historical data shared, was of value or not.  If any of you are interested in a more "tactful" man who shares this info from his own perspective journey (far more loving in his approach BECAUSE of his experience with Christmas) then I would suggest Jim Staley of Passion for Truth Ministries.  Again, I need to reiterate that the first time Duane addressed this with me, I was horrified by his opinion, did not believe the background info and was very angry (quite frankly) that he dared threaten to take away from me something as precious as the family treasured memories of Christmas... So trust me, I get the whole "feeling offended!"

But a seed was planted.

And that seed grew and grew and suddenly my eyes were beginning to see things in a light I had not imagined before and enough information surfaced that I could no longer say I was 100% convinced that our version of celebrating Christmas did not go against God's requests and commands in some way(s)... enough that the conviction was no longer strong enough to choose to continue that tradition in our own little family (or not so little).  That realization created a sense of urgency in sharing that with you all for fear that any potential validity to those historical claims could threaten the beautiful faith I have been witness to in all of you around me as it felt that it had threatened mine.  And beyond that sense of urgency, there lay a loving respect for our loved ones for the choices they make and the journey they themselves are on!  BUT if we have been deceived in any way, I wanted to blow that whistle so loud that God's light would cast away ANY shadows that could blind us unknowingly in any way!

That is our family's journey, open and raw, still in the process... but shared with you openly every step of the way.  And those of you who love us and are witness to this journey... you have blessed us with your prayers, your concerns, and the information you've shared, pro and con.

So let me say it again... you have such beautiful hearts!  You are so very loving and I am glad that I can share with you the good and the bad of this journey I call "my life".  God bless you all out there, know that you are loved, that you are my brothers and my sisters of this world, that I wish you Truth and growth every step of the way... In Jesus precious name, Amen.

Thursday, 23 December 2010

Sivana's kidney update

Have I mentioned yet how tired I am of doctor's appointments?  We have had so many of them (particularly since September) that I established a bit of a cross-referencing system to ensure dates and times are entered correctly in the calendar (both on the computer and the one on the wall).  Given the delicate art of balancing when Duane is home, when I need to nurse Sivana, when Isabel has to be picked up from school, nap times, etc... it is critical that we not make any errors with these appointments.

I applied this approach when Pediatric Nephrology left a message to say that Sivana's appointment was going to be on December 15th at 1:00 pm.  Great, it would mean finding a babysitter but we would make it work given the importance of checking up on Sivana's kidney issue.  The message asked that I call back to confirm which I did, repeating the time and date specified.

Eventually a letter was sent and once again I double checked the date and time on the calendar.  All was good.  We lined up my dad to babysit and the timing would be great... the toddlers would be napping, and given the two hour anticipated duration of this appointment, I could go straight to Izzy's school afterwards to pick her up, rather than drive all the way back to the farm and then back into the city to get her.  Not too shabby!

Lunch was rushed but eventually I got out the door.  Off we go to Children's Hospital where Children's Renal Clinic is found.  I know this hospital like the back of my hand given the ample time spent there with Isabel!  Renal clinic is in the same unit as Urology (which is where Anika was taken just last month) and a half wall away from Neurology (which is where Isabel goes).  Parking was a nightmare and finally I rush to the receptionist.  At this point, Sivana has woken up and is crying.

"Sivana Vaags to see the Nephrologist."

"Who?"

"Sivana Vaags... for the renal clinic at 1:00 pm?"

"I'm sorry dear, but we don't have a Sivana scheduled for today."

"You have to be kidding me... trust me, I KNOW that it is supposed to be today... I had a message, a letter, too!  Is there any way you could fit us in?"

"Renal clinic is not even open today.  Oh, but we do have Sivana scheduled for tomorrow at one o'clock."

And because this is more work than I can put into words, tears start flowing down my cheeks.  I had an appointment scheduled for that time but as is the duty of a mother, I dialed my husband on the cell phone, asked him to contact my specialist to cancel (with hopefully no penalty fees for the short notice) and put taking care of myself to the side...

sigh.

Well, I did sign up for this when I decided to have five children!  I just had no clue we would spend this much time seeing doctors and specialists!

Anyways, where was I?  Oh yes, the idiot standing at reception crying because despite her best efforts to cross reference this sort of data... I failed to do it right.  I of course apologize for the tears confessing that I really don't know why they are flowing like this.  The women are great and are probably an open sob away from wrapping their arms around me to comfort me!  Sivana is wailing so I make my way to a chair to try and nurse her.  The ladies paged the clinician nurse who was still around and before I knew it, there he was standing before me!

The poor guy had his jacket on and everything!  Now I don't know if he was leaving for the day or coming in but given that there was not supposed to be renal clinic that afternoon, my guess is he was trying to leave.  But bless his heart, he weighed and measured Sivana, printed off the requisition for more blood work and showed me how to tape a urine-collecting-bag to her (poor little girl didn't make a peep while we are sticking this bag to her nether-regions!).  He was fantastic.  Sure enough, we WERE there for nearly two hours afterall!

Sivana's blood work distressed her a great deal.  She very seldom gets upset about anything but holding her arm down while the woman stuck her with a needle (and dug around for a while), my poor sweet baby was nearly beside herself.  She started choking and I still couldn't do anything as the woman was still drawing blood (and showing no support or concern whatsoever).

When it was all done, it literally took about five minutes to calm Sivana down.  And even when the sobbing stopped, she would look into my eyes with big tears and "talk" to me as if to say "What the heck was that all about mom?  Did you see what that lady did to me?  And what was with you helping her??"  This of course comes out as "Waaa!  Owwww.... owww Waaa!"  But a mother knows what her children are saying... well okay, that's what I would have been saying if the tables had been turned!

The next day, I arrive to the real appointment and greet the ladies at reception again with a smile... "Hey look, I am here for the right time this time!  And I promise, I won't cry today."

They chuckle and before I know it, I am in a room with Sivana talking with the nephrologist about the blood work and ultrasound results.

Sivana has four cysts in her right kidney now... that is her good kidney.  Blood work came back pretty normal so she is satisfied with kidney function at this time but we will repeat the blood work and urine sample in three months with a follow up appointment in six months.  Ultrasound will be done again in a year's time.  Sivana will be following up with her nephrologist every six months for the next few years.

She asked if polycystic kidney disease runs in the family.  As far as I know, it does not.  She said it is not likely that it is polycistic kidney disease, but given that cysts are starting to form on the healthy kidney, she cannot rule it out completely.  If you do a quick google on that disease, you will see that it is less than ideal... the inevitable end result is kidney failure leaving the patient on either dialysis or needing a kidney transplant.  So we are hoping (and praying) that Sivana's condition will remain the simple multicystic dysplastic kidney.

And so I type this as Ethan and Anika continue to chime over the baby monitor in their room... apparently they are in need of water... again.  Sivana is sleeping beautifully (as always) and the evening is quiet with the promise of relaxing somewhat.  No research tonight, no cleaning up, no administrative poop... I think I will simply put my feet up and give thanks to God almighty for the health He has blessed me with all these years... I cannot believe what a gift (and rarity) it is!  And if only I could send some of it my children's way!

I send prayers out to find you this winter's night to keep you warm with the sentiments of this mother's heart.  May my love spill forth to find you, to comfort you, to hold you safe in prayer.  May your own bodies be healed, cared for, nurtured.  And may you think of our little Sivana tonight as she fills our home with her sunshine and gentle nature... our blessed baby girl... Sivana Grace.  Amen.

Thursday, 16 December 2010

Before my very eyes...

I am sure that if you were to ask my darling Melina what she thinks of being the "big sister" she would likely look my way cautiously and wonder just how honest she should really be! Let's face it, when you're four years older than your severely disabled sister and eleven years older than two toddlers and now a baby sister, that is not exactly what one would call a recipe for "happily ever after".

But Melina takes on this task with a rich measure of grace (most days)

 She has recently turned fifteen and I THANK GOD that she has a level-headedness that I did not have at her age. I was unique in my own way back then but to think that if history were to repeat itself, she would be one month away from finding out she was pregnant...

Is it just me or is it getting hard to breath right now??

Instead, she can talk to me about unhealthy patterns of behaviour she seems to be drawn to in boys (ok, how many of us ADULTS can recognize this AND approach our relationships objectively??) and whether or not she recognizes that she is losing "who" she is in a relationship setting. Pretty astounding for a fifteen year old, if you ask me!

I still remember those early colicky days when nothing but the horrific rambunctious roar of James' heavy metal music would lull her to sleep. I remember the defiant "I DO IT!" and the endless hours of Barney. I remember finding her (after she had been a little too quiet) and her "James" doll covered by marker (face, lips, and tongue for that matter) as she looked at me and explained that she put makeup on. And then there was the pencil colours all over the apartment wall, the long trains she created with toys, cushions, boxes, etc... and there she was at the front, a buck naked conductor!

There were the smarties addiction when attempting to potty train, the tantrums in restaurants and mall, the wonderful looks strangers felt the need to give me given I was not even eighteen yet...

And yet, I knew I loved her more than anything in the world. She wouldn't let me cuddle up to her... EVER... but I trust she knew it in the ways that I taught her to use her imagination, to believe in herself, to take charge and solve whatever problems she had, and above all to LOVE no matter what.

The years have flown by and all too quickly I am looking back with yearning at moments I used to take for granted: the constant nagging to play, the begging to go for walks to the park, the bedtime tuck in sessions that would take nearly forty minutes of "unloading" about stuff in her life, etc...  Even the hugs and kisses have dwindled and I remember that strange feeling in my stomach the first time I went to tuck her into bed only to have her turn around at the stairs to say "you know, I really don't need that anymore, mom.  Thanks anyways."

Gulp!

And the realization that maybe she didn't need them anymore, but I did! 

Was it so long ago that I would take those long hour walks down the gravel road, pregnant with this little person who would change so many lives, talking to her about my hopes and dreams of being her mother and the fears of not being good enough given my age.  Those long walks when she would kick with delight as though she knew what was coming... or dreaded the non-stop verbiage that would spill forth over the next hour!  The many times I picked up my guitar and rested it against the little space that was left on my lap to sing to her... to give her all that I could in my short sixteen years... would it be enough?

And then just before turning four, an unexpected turn of events with Isabel's early arrival and high medical needs.  Oh how I missed her those days when every spare minute was spent at the NICU with Isabel who fought for her life.  Time at home was spent trying to catch up on sleep and pumping milk for Isabel and talking to doctors on the phone.  So much uncertainty, so many little triumphs celebrated in light of the fact that setbacks were expected in unexpected moments!  And then the next couple of years filled with dragging her along to Isabel's doctor's appointments, physiotherapy, occupational therapy, feeding clinic, pediatric neurology, child development clinic, children's special services, children's rehabilitation centre, special equipment modifications, etc...

Not a single children's book that we read to her regarding the joys of becoming a big sister when I was pregnant covered what would be required of Melina as a "big sister".  It seems as though a lot was sacrificed... and yet so much was gained.

Would the best of my intentions be enough?

And the young woman who stands before me today brings peace to the restless soul that questioned if i could do this.  She is strong, beautiful, wise beyond her years and someone I LOVE talking to and listening to (although if you asked her, she would probably say that I need to practice more listening and do less talking).  We are honest enough with each other and she can usually tell me if what she is about to share with me requires advice or is merely a "shut up and listen" venting session.

I have to admit, it's hard not to try and solve all her problems or to throw in lessons here and there (I'm working on it, my girl!) but in the end, I am so honoured any time she comes to me about anything.

And before I know it, she will be packing her things and starting her own life.  I will walk by her old room and feel that same strange feeling as when she stopped at those stairs to tell me she didn't need to be tucked in anymore.  I'll look into that empty space and pray for forgiveness for the moments I took for granted, and I will give thanks for those I captured and hold dear in my heart.

It is amazing how quickly the time, a life, can pass by your very eyes... and I am honoured to be witness to the story that is "Melina".

Wednesday, 15 December 2010

Bladder Matter

Once again, I have to shake my head as I take in the many doctor's appointments we continue to have (one or two or more per week since September).  I have to admit, we are not doing such a great job of selling people on the whole "go organic, go natural & don't immunize your kids!"  Yeah, that way they can deal with wonderful health issues just like ours!!

Well, I don't think it would be fair to say that it is due to our lifestyle that our kids are facing health issues but it most certainly causes us to stop and think, "what the heck are we doing wrong??"

In Anika's case, it is the reflux of urine from her bladder back to her right kidney.  This causes many bladder infections and possible kidney infections.  Bladder infections... we can deal with, but kidney infections cause permanent damage so even though our heart's desire is to treat her naturally and as free of antibiotics as possible, we are talking about screwing around with a significant organ and all decisions need to be weighed very heavily.

I always like to seek other people's opinions about these things, chew through each of them, discuss further with Duane and sum up to our own conclusion.  And boy can the opinions vary!!  Especially when your sources of reference are from one end of the spectrum (go-hard anti-conventional medicine activists to pharmacy-tech assistants!).  But I would much prefer to hear the full gamut of opinions than reside stubbornly in one spot.

We also met with a urologist who said we either put her on antibiotics for the next year at which point they will perform another VCUG to see if the backflow has corrected itself or worsened OR choose one of two surgeries for her.  One of which is to inject a sticky substance at the base of the ureter to prevent backflow... at which point I asked "but if it prevents backflow, does it affect drainage from the kidney?"  The answer was "yes, sometimes it can cause issues with kidney drainage."  ARGH!

Bottom line, summing up most of the opinions, one aspect remains consistent... this is her kidney we're talking about and chronic bladder infections absolutely need to be addressed!  The "how" aspect is the variance...

Anika's urine is very alkaline meaning it lacks the level of acidity required to kill off bacteria such as style="font-size: normal;">e-coli (which has been the main culprit bacterium for her chronic bladder infections).  It's the kidneys that play a key role in maintaining normal acid-base balance primarily through the re-absorption of sodium and the tubular secretion of hydrogen and ammonium ions (waste product of the metabolism).  Most of the bacteria responsible for urinary tract infections make the urine more alkaline because the bacteria split urea into ammonia and other alkaline waste products.  Sadly, when I asked the urologist what the link is between Anika's alkaline urine (discovered by the naturopath) and her chronic bladder infections, both urologists present said "there is no connection.

I was not satisfied with that answer.

So I studied, researched, etc... and stumbled upon a natural sugar called D-Mannose.  It is a simple sugar found especially in the bladder.  Safe for children, proven just as effective as antibiotic (and in some cases, better) and even safe for pregnant, nursing moms and diabetics!  I read up on several sites including a pharmacist's blog post which I was rather impressed with.  I was very intrigued by the mechanism of action (click on the link to read up... pretty cool, really) and ordered a bottle for Anika.

We also learned about the benefits of cranberries and ordered ActiFruit Cranberry Chews by Enzymatic Therapy which Anika LOVES!  (They really are quite tasty... what?  I had to double check, you know!).  Cranberries lower urine ph (make it more acidic), has anti-microbial properties AND inhibits adherence of p-fimbriated (mannose-resistant) E. coli to the uroepithelium (the bladder walls).  You can even read up on a neat pilot study on it.

All of this to say that we are making this last "natural" attempt before turning to the long-term antibiotics.  If this does not work, we simply are not going to take any more chances.  It has now been nearly a month and Anika has had NO BLADDER INFECTIONS!!  She had a fever last week and we feared this was another UTI but her urine sample came back completely clear!

We are ever hopeful that this will be effective but ready to fill those prescriptions should Anika be faced with anymore UTI's.

For all of you out there, be healthy, be loved, be cared for.  May your own bodies be healed by the choices you make, nourished by the foods you take in, loved by the respect you have for it!  Regardless of random hair growth, effects of gravity, and more "beauty marks" than a connect-the-dots compilation booklet... it is an incredible ecosystem and it sustains your life!  Be good to yourselves and may this find you giving thanks for the health you do know.  Much love (as always) and God bless, everyone!

Monday, 13 December 2010

Our darling Sivana

Here we are three months after Sivana's arrival and I have barely said three words about her! What can I say? Ever since that one post where I sent out an S.O.S, she has been an absolute dream baby! I had to cut out dairy and chocolate (oh what a shame) but as long as I stick to those two dietary omissions, we have the most contented little girl on our hands!

These days, she is on the verge of giggling. Right now, tickles and gleeful smiles are enhanced by that little coughing sound which eventually graduates into a giggle. It is such a delight to be witness to these milestones!

She is my baldest baby but oh she is so darn cute! She wakes only once in the night for a nursing and every now and again, she'll go through the whole night (and I wake up in a puddle... or rather, a milk bath!). Those mornings I wake up feeling actually rested only to suddenly be met with the pain and heaviness of rock-hard (man I wish they could still look like this post-nursing) breasts!

I apologize for any visuals this may have caused and will hand out donations for therapy once this organic farming business starts to pay!! Hee hee hee (sorry, Hon!)

And being true to who I am, I will punch Duane in the arm those mornings and say "Isn't it just AMAZING that my body produces ALL of Sivana's nourishment?? And weigh a tonne in the process?? Women's bodies are sooooo cool!!!"

(Please remind me of these statements post-nursing when this woman's body deflates into a state of "what-the-heck-just-happened???")

Sigh.

Wednesday we meet with the nephrologist (kidney specialist) to discuss her multi-dysplastic kidney issue.  We sent blood work in a few weeks back to make sure everything is working well given her one-kidney function.  So far so good... praise God!  Never a dull moment around here!

Suffice it to say that life is gloriously hectic but we cherish the privilege we have as parents. And Sivana has found a place in this family that just perfectly fits in the palm of our hearts... if there is such a place... now wouldn't that be interesting??  Oh good grief, I just can't keep my mind from bouncing around like a ping-pong ball!  Let's try this again... Sivana has blended into our family effortlessly and her presence adds a wholeness to our world beyond all these pathetic attempts at words could ever say!

And with that, my dear ones, I shall bid you adieu as I head off to bed.  Isabel's music is playing softly in the background as she sleeps, the little ones are no longer chiming over their baby monitor and Sivana's breathing over her monitor is indicative of a sleeping angel in our midst.  May you be greeted with beautiful dreams tonight or at the very least, a peaceful night's sleep.

Goodnight, God bless and sweet dreams!

Friday, 10 December 2010

As promised... here is Micheal Rood

As promised in my entry "Holiday Introspection", here is a video that greatly opened my eyes and stirred an inner desire to seek out my responsibility as a parent handing down traditions to my own children. It has been one of my hardest journeys as it has meant stepping away from the comfortable, the fun, the "norm" into a new realm. It has taken me from wanting to embrace differences to feeling like I am stepping on toes for choosing to step away from Christmas.

But I have to ask myself "how must I serve our God?" And he has laid it out so very clearly in Torah (the first five books of Moses: Genesis, Exodus, Leviticus, Numbers & Deuteronomy). So why don't I just keep this to myself for fear of others feeling uncomfortable and maybe even judged? Why not smile lovingly and just say "it doesn't really matter."?

Because, I love all of you out there... you are all my brothers and my sisters! I pray for you each night as I pour my heart out to God that His mercy and love find each of you, strangers in this world, but my brethren according to God's! Because if our good intentions are leading us away from our Father (as good 'ol Satan would surely want to do), then I want to yell out from the mountain tops "BEWARE!! DO NOT BE TRICKED! COME, MY FAMILY! COME MY LOVED ONES!"

I know this will mean ridicule, snarks and remarks... and this saddens me. We have already begun feeling those pangs and even Melina feels set apart from her friends at school that we observe Sabbath from sundown on Fridays to sundown on Saturdays. But if it means that in those snarks and remarks that someone might think to themselves "why ARE those crazy yahoos doing this?" and they look further, too, then it is worth being ridiculed! Even the prophets warned us that in the end times, "Thus says the LORD of hosts: In those days ten men from the nations of every tongue shall take hold of the robe of a Jew, saying, 'Let us go with you, for we have heard that God is with you.'"

We have been led away from God's commandments believing that they no longer apply. But our Saviour Jesus lived them every day of his life, as did our dear apostle, Paul (or Rav Shaul, his Hebrew name). I tell you, my beloved family out there, the more I delve into the layers upon layers of God's word, the more depth is revealed! Right down to his Feasts being laid out as though to train us to recognize and to be prepared for major events!

So if you are reading this and feeling like I have just flown off the coo's-coo's nest, that's okay! I thought the same thing when Duane first challenged me years ago. But I cannot deny what has emerged, what has been revealed, what has greatly humbled me! Right down to the shaking discovery of how ego-centric I have been! (As I post on my blog as though my thoughts really matter out there!! Oy, the ego just keeps sticking around!)

Sigh.

Anyways, I know I am taking a huge risk in posting this but I am okay with that. I don't want any of you to feel like you will be loved any less, or prayed for any less, or judged, etc... if you do not agree with what you are about to watch. As a friend once said "this is our 'description' not a 'prescription.'"  I just long to reveal to you what has truly changed me. I have promised to be honest with you, especially in the face of times where it is most challenging. And just know that I share this from the deepest parts of my heart's desire for all of us to be one in His Truth... or at the very least to help explain to you, our loved ones, why we are journeying in the direction we are. God bless you all out there, especially given the daunting task of moving past the "self" into a life of servitude... a task I continue to struggle with every single day!

So without further adue, here is Mr. Rood... and just as a heads up, some of you may very well refer to him as Mr. Rude!  He is very passionate about abiding by God's law and anything outside of it he considers an "abomination"... a little hard to hear (okay, not fun to hear at all) but if you can look past what feels like harsh judgement to the historical data, it is very interesting to say the least.

TRUTH & TRADITION
By Micheal Rood

Wednesday, 8 December 2010

Isabel's update

After her fundo surgery
As I sit here wondering how to begin this entry, my thoughts are drifting back through eleven years of memories with Isabel.  The pregnancy, the fears, the c-section, the tiny cries, the waiting every day for her to live one more day and be one day stronger, the first time in her crib after starring at it empty for all those months, the first smiles, the laughs, the countless hospitalizations and the wonderings "is this it?", the multitude of appointments, the handful of specialists, the surgeries, the ups and the downs, the miracles, the prayers, the fears, the joys...
The first time Duane held Isabel... and I fell in love!

So much is wrapped around that young lady's existence.

I remember when I first met Duane, we would often sit on the couch in the living room of my tiny home and Isabel would be sitting in her tiny tumble form chair watching Finding Nemo or Shrek or one of her favourite movies.  Back then, she was so tiny and light that she could kick her legs and fling her arms around as she squealed with delight.  Always a hoot to watch her do that.

I distinctly remember sharing my heart's prayer with him that one night in particular.  "I have been asking God to prepare my heart to let her go when the time comes.  Because to imagine it grips so tightly around my heart that it makes it hard to breath.  I cannot imagine what my process would have to be for that anguish to be removed by loving acceptance... but I will need it to happen before she leaves this world."

As always, God has answered my prayer... and not in the way I imagined he would.

Since having more little ones, Duane has taken over as primary caregiver while I tend to the little ones so he is the one to oversee that meds are administered at 9:00 a.m. and 9:00 p.m., diapers are changed throughout the day, water administered via g-tube prior to feedings and pump feedings started on time, etc...  If he is not around, he delegates "okay mama, I am out in the fields today so you'll be looking after morning feed, meds and water."

Stepping back has weighed very heavily on my heart "Is Isabel paying a price in my having more children?  Or is this just a temporary stand-back while I have little ones to nurse?"  And sure enough, as I walk into her room to check in on her, there is Anika sitting next to her holding her hand again as they watch Isabel's movie together... as she has since she could crawl up to her chair.  Reassurance sets in and blankets that guilt as I watch Isabel younger siblings love her.  And to see her look at them and smile tells me this is not a "price to pay."

But still, the guilt is there when I remember how adamant I was with therapy stretches, one-on-one time and elaborate reports on any doctor's appointments.

And the other aspect of guilt comes from a sense of peace should God call her home.  Is a mother supposed to feel that way?  Why doesn't it clench at my heart like it did before?  Is that answered prayer?  Or a distant mother's indifference?  Even in typing those words, I don't think I could ever call it indifference... it will break my heart when that day comes but the fear of it does not cause a shortness of breath anymore.  Especially as I watch her get bigger and bigger, more physically challenged particularly where her scoliosis is concerned.

Her back is so curved on the one side that I wonder if her rough nights of crying are from the pain or from wanting to watch her movies!  These are bo-bos I cannot kiss better or make them go away.  These are hardships she has endured her whole life and they are only getting worse.

The latest health update has to do with her seizures.  For nearly a year now, we have noticed her twitching.  But because she is fully conscious during these twitches, we figured it was just a neurological twitch and no big deal... until this summer.

When we would sit on the veranda on Sabbath and pray over each of the kids, we especially noticed Isabel's twitching getting more drastic... from a mild facial twitch to a full body twitch.  I scheduled an appointment with pediatric neurology and sure enough these twitches are called Myoclonic Seizures.

I felt terrible that she had gone all this time without these seizures being treated!  The neurologist prescribed another anti-epileptic medication that would address these types of seizures and increased her current medication to address her Tonic Clonic seizures.  Now this was back in September already.  Poor Isabel ended up reacting to the first med they prescribed but has been doing rather well on the second one.  Her myoclonic seizures stopped altogether those first few weeks.

However, this past month, her seizure activity has greatly increased.  Where she used to have seizures every six to eight weeks, she has been having about three per week!  The neurologist suspects it is just because she is adjusting to a new medication but part of me is feeling afraid again.

I was warned eight years ago that we would be lucky if Isabel saw her teenage years.  She will be twelve this May but the healthiest she has ever been.  I honestly thought we could laugh in the face of that prediction... but here we are.  Back then, they warned that it would likely be one big final seizure which often occurs in the night.  As tears flowed down my face, she said that it would be important as her parents not to blame ourselves when we would find her the next morning.


How could you not blame yourself?  "If I had just checked in on her... if I had just slept in the same room... if... if... if..."

All of this could really only be an adjustment period to the new med but I would be lying to you if I said part of me thinks we are getting closer to that time.  I hope that I am wrong.  But in the end, I want what is best for our Isabel.  She has been such an amazing human being.  I celebrate the miracle she has been, the light she has brought, the love she has exuded... all that encompasses who she is.  My heart will break, but peace will also comfort me when that time comes as I imagine her free of pain, and finally in our Father's merciful presence.

I cannot help but think of all the abortions that happen out there when women find out there is something "wrong" with their fetus... and I think of what they have just robbed themselves of... I would have never, ever traded my time in with Isabel for anything in this world!  It has been one of the hardest aspects of my life but also the most blessed.  And those around her who fall in love... she has touched so many lives with her unconditional loving smile!  Despite her life of pain, I don't think she would trade her life in for anything either!
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We continue to wrap her in prayer, in love and in hope that she live her life knowing these things.  And that each day be met with gratitude for having her with us.  May this find you living today to its fullest and embracing the gift of life that surrounds you.  We are all here for a purpose beyond anything you and I could ever imagine.  The less we fear pain, the more we can trust that good was always meant to be part of the picture.  And perhaps what is good would have never looked so beautiful to us if we had never known its absence.  Much love to you all out there.

Tuesday, 7 December 2010

Something special

You just gotta love those female hormones.  Either I can blame today's emotions on that or I took some crazy pills today!  Now for all you lovely ladies out there, tell me if you can relate to this scenario (as part of me wonders if I really am partly crazy).

You start thinking about your husband and your heart swells with love and you think of all the ways that he is wonderful and your thoughts drift back to the many people who have told you how lucky you are to have him as a husband...

Lovely thoughts... initially... but then you start to wonder if you, in turn, are special, too.  And the thought pattern looks something like this:

"He is always so giving.  Yesterday he was barely home because he was helping so-and-so and then on the way back he stopped in to check in on so-and-so and sure enough they were in need of help.  Then I had a major headache and he watched the kids for two hours while I rested.  And he is always motivated to keep working no matter what... I don't feel motivated no matter what.  Look at the laundry pile on the couch... sheesh, I've been starring at that pile for how many days now?  I should really have it all put away before my friend comes over tomorrow.  Ah see?  Now I am deceptive... I bet you Duane isn't deceptive.  Why should my motivation be for my guest to think that I keep a clean house?  I keep it clean like every three or four days... I bet all the other wives out there keep it clean all the time.  Hmmm, maybe I am not a very good wife.  I'm being pretty pessimistic right now... that's not very good.  Who wants to be with a pessimistic woman?  Oh my goodness, I am a TERRIBLE wife!  I even complained about the way he put the dishes in the dishwasher the other day instead of THANKING him for putting dishes away!  I don't deserve him!  I am TERRIBLE!  I used to be a nice person who always looked on the bright side of things and now I just talk to myself about how pathetic I am!  He is not going to want to be with the woman I have become!  Ah crap, I forgot to take meat out for supper tonight... see?  I am a terrible wife!  Where are the cookies?"

And so on and so forth.  This is usually the part where my husband pokes his head in from outside and asks with a loving smile "when's lunch going to be ready today?"  What is my response after this whole mental ordeal?  And here's the real kicker... I get upset... WITH HIM!  Where on earth does logic fit into this picture?

"Lunch will be ready when it's ready okay??  I will call you when we're ten minutes away."

Somehow, despite a slight look of surprise on his face, he then asks if I think I'll be able to catch a nap with the kids this afternoon.  I know he is right.  I am grumpy and should sleep but somehow, having him say it really does not help in that moment.

"Are you saying I am grumpy??"

"NO!  Well, maybe a bit."

Oh good grief someone keep the bull-pen closed because this bull is snuffing and bucking in its pen!  But the truth is, I AM being grumpy.  He is not saying anything but the truth! 

And then that brings me right back to the fact that he is so good about being honest even in the face of an overtired, grumpy wife... he can still stay loving and calm by seeing past the moment and knowing I am just being bonkers (hopefully temporarily).  And if I had just thought about lunch an hour ago, I could have had the meat thawed and a lunch ready for noon!!  For a deserving husband!

ARGH!!!

So this is where I am almost pleading with you ladies to relate to this to some extend or I really am going to think I am the worst wife in the world to a very good man.  I miss being myself!  The fun-loving care-free girl who would make up wacky (or rather dorky) dance moves in the kitchen while working or leave funny notes in my husband's wallet or answer the phone when he'd call by saying "City Morgue, you stab 'em, we slab 'em."  My favourite (which annoyed Duane the most) was my whiny voice (similar to Janice from the TV show "Friends") when I would ask him "So, do you fight fires?"  This is funny because the poor guy has had women throw themselves at him for being a firefighter!  In that terrible voice, I would ask him "Would you have married me if I sounded like this?"

At which point he would chuckle, look me straight in the eyes and say "No!"

Aha!  Perhaps not so perfect afterall!  Oh who am I kidding?  The guy would be a saint if he had said yes.  Saying no makes him somewhat human!

All of this rambling to say that I feel like a big pessimistic overweight wife who is not showing enough gratitude for the blessings in her life.  Sigh.  I will have to devote some time to praying for the world again because when I think of others instead of myself, it is truly uplifting!  Ah man!  Now I turned even a selfless act into something selfish!  ARGH!!! 

Okay, enough with the pity party!  I am choosing to stop this right now.  In fact, it is 11:04 pm as I type these words and I am going to stop typing, get down on my knees and pray for all of you out there.  I will delve so deep in prayer that I will ask God that you each feel a special twinge of joy in your heart even as you read these words!  See?  I am starting to feel all pumped about it already!  Oh it is far more fun loving you all out there than beating myself up!  (And this my friends would be an example of hormonal roller coaster rides).

Bless you all out there for checking in on this crazy nut of a woman.  I love you all for sharing of your time, and for connecting with me at the best of times... and the worst of times.  May this blog entry find you in your own mental spaces (whether positive or negative) and know that you ARE something special even in those not-so-great moments.  And should you feel deep in a pit of darkness (or pity party) open your heart to prayer for those around you, those whom you love, those whom you don't know and finally, those who have hurt you... and find your BEAUTY.  You are all truly something special!  After all, you contain the breath of God, right?  I cannot imagine anything more special within you!  Love you, bless you and all that good stuff!

Holiday introspection

The snow is dancing in the air like soft kisses being blown down from heaven... it is beautiful and there is always such a gentleness that slows me down when I peek out the window to glimpse the mood on such days. The sun is hiding behind a grayish-white sky creating an illusion that the treeline rests against a seamless blend of earth and sky.

Ah, God's masterpieces never cease to take my breath away! To craft such beauty so effortlessly must be a testament to His endless beauty! How I look forward to behold all that He is someday.

And with that feeling in my heart today, I am asking myself a heavy question that blankets my thoughts much the same as the snow blankets the ground around me... "what traditions do I want to pass down to my children?" It is so simple to find comfort in the traditions I have always known: birthdays, Sunday mass, Reveillon (french catholic tradition on Christmas eve) and Christmas itself, etc... The natural instinct is to just keep doing what I have always done. No questions asked.

But therein lies a dilemma.

Traditions are essentially a gift passed down from our parents to us, etc... They are so easy to accept especially when nostalgia leads us away from examining in greater depth with discernment whether or not that "gift" serves ourselves or if it serves God. So many of our childhood memories are wrapped around them like candy wrappers! Not to mention, we trust that what is given us from those whom we love... is good, right?

Nearly four years ago, my husband planted a seed in my mind (and it was NOT well received). He asked me if I knew the origin of the Christmas tradition. In all honesty, I did not, nor did I care. Regardless of where it came from, what mattered was its significance to me and my intentions today. I figured that God knew my heart and if Christmas was a beautiful time of year for me (being generous, thoughtful and family-oriented) than surely this was pleasing to Him.

Not to mention there were so many theories on the origin of Christmas, that rather than tie myself to one of them, I wanted to focus on what it had become for me personally.

But it was enough of a seed that doubt was planted and I began to move away from what felt warm and good into a place of responsibility, whether I wanted it or not. After all, I am responsible for teaching my own children what they in turn will pass down to their children and their children's children. One of those teachings will be to question what even I hand to them as my understanding of truth. As parents, Duane and I want to do our best in teaching them what we believe is asked of us by God but in the end, I pray that our children will learn these things for themselves, challenge it and solidify it beyond mere "tradition" by the truth they will have discovered for themselves. No differently than we can tell them about faith and God, but until they experience Him for themselves, it will remain only words of wisdom.

And perhaps through their own seeking and challenging, they will discover something we have missed. Because where/if we are wrong... WE WANT TO KNOW! If we are wrong, then we want to delve further in our research and understanding so that we can change or grow closer to His truth. I always thought that I welcomed challenge as this was my opportunity to discover if what I believed could stand up to it. And if it couldn't, how then could I stand firm on a belief that could not stand on its own two legs?

Yet here I was four years ago, enraged that Duane would dare to challenge such a feel-good tradition that I believed honoured the birth of our Jesus Christ! I wanted my Christmas tree and decorations... the little hand-made ones that Melina made when she was just little. The tiny porcelain slippers for "Baby's first Christmas" that marked a milestone for Melina and Isabel! I wanted the feel-good gifts under the tree and the delight in my children's eyes when they saw all those beautifully wrapped boxes and the mysteries contained therein.

I wanted... I wanted... I wanted...

And only this year have I gasped at my own reluctance in realizing my motivation had nothing to do with serving God... but rather my own desires. How grotesquely humbling!!! That I dared hide behind the excuse that "God knows my heart and that's what matters" and "that's not what it means to me." Oh dear Father in Heaven... all of these statements revolve around ME!

So I have willingly (and oh so humbly) done a little more delving using the bible as the reference tool. And boy oh boy a whole new world feels revealed! The video that impacted me the most was done by Michael Rood and I invite you (yes, even the reluctant) to view it and leave any feedback that would challenge it or defend it. I want my eyes opened completely, so if you see/hear/know something in this video that does NOT align with scripture or historical facts, PLEASE LET ME KNOW!

Remember that this is our own family's journey and by no means do we hold ourselves up above anyone else. We have been humbled over and over again on this journey which has revealed to us not to be so cocky in our beliefs! Because all too quickly, new facts can emerge that bring us right back to the "drawing board" so-to-speak. Just know that I believe strongly in sharing my own heart with you all, whether we agree or disagree.  To share with you the stirrings in my heart that pull me in different directions... and my goals as a mother to decipher all of this in hopes of handing something down to my children that can make sense to them.

May the Lord bless and keep you this day as your thoughts wander back to the values you have or are instilling in your own children or those around you.  It is a humbling task!!  And I pray you are uplifted in it and may the traditions that come forth from you be beautiful and bring glory to God!  Much love to all of you out there, and God's richest blessings your way!!  Thank you for being witness to my family's journey!

Candlelight - The Maccabeats - Hanukkah

I am drafting an entry on an introspective journey our family has embarked upon where Christmas is concerned. Suffice it to say, that as we delved further into the history/roots of Christmas vs Hanukkah, we have chosen as a family to celebrate the miracle of eight days that occurred at the Temple when one tiny jar of oil burned for eight days straight as the Hebrews devoted that time to re-consecrating the Holy temple to God after it had been violated by the Greeks. It has been loads of fun as we have learned more about this miracle, the traditions associated with it (eating latkes which are fried potato pancakes & spinning a dreidel), and lighting the hannukia.

And I love imagining what this festival looked like when our blessed saviour, Jesus, celebrated it with his disciples in Israel!

We met with a group of about seventy people who share in this same mindset and this video was played. We laughed, we bopped to the beat and appreciated the fun-factor to this video. Hope you enjoy it as much as we have. Our little ones bounce about like crazy bunny rabbits when we play it! Much love, happy holidays, happy Hannukah, and Merry Christmas! Bottom line, may the love of God surround you this special time of year!

Saturday, 4 December 2010

Pitterpatter of tiny feet

The floor creaked as it always does when I tiptoed back into bed after Sivana's 2:00 a.m. nursing.  Groggy and nearly half asleep before reaching the bed, I thought nothing of my usual THUMP back into my spot next to my sleeping husband.

Given that my dear husband has restless leg syndrome, I have learned to tune out the constant snap, crackling, scratch, thumping that goes on in his sleep with his ever moving feet.  (It is so bad, that he actually wore a hole in our many-thread-count sheets!!).  But something must have been different about this pattern of scritch-scratching because it woke both of us up.

I turned the night light on and we both looked at each other as if wondering who else could possibly be scratching away in our room.  Finally, a look of familiarity flashes across Duane's eyes as he sleepily says "Oh, that's just a mouse in the walls.  Go back to bed."

WHAT??? 

Contrary to what he believed would be comforting words, my pupils enlarge at the possibility of rodents roaming about within our walls.  Especially given our attic is currently under renovation (a new space for Melina) and the walls are left bare to the construction bones of this very old house and consequently what has apparently turned into a trafficking house for mice!

Reluctantly, I ignore the little scratching noises and turn the lamp back off starring wide-eyed into the dark.  A few more tosses and turns and Duane gets up to go to the bathroom.  I hear his usual slow THUMP... THUMP... THUMP as he walks by the foot of the bed only to be thrown off by the sound of a sudden river dance move followed by a yelp as he suspends himself in the air for a moment to THUD back down at an impressively farther off distance!  If only I had the lamp still on!

And in a flash (no pun intended), I turn that lamp back on as I jolt up in alarm.

"That blasted thing is IN our room!"

WHAT?????

"It just scurried past my feet!"

Surely he is NOT going to think THESE are comforting words!  I bolt up onto my knees as he runs out to the landing to grab a broom.  Yes, apparently we will sweep the crap out of this little rodent to ensure he never, ever wants to return again.  I chuckle nervously as the humour of this all begins to set in... particularly the little river dance move performed by my beloved husband!  But alas, the task is still at hand to find that mouse!

Darn the fact that I have gotten lax in leaving dirty laundry all over our bedroom floor.  This little stinker could be ANYWHERE, including the pant leg of my jeans!  Sure enough, against the wall, this mouse scurries out from behind our dresser over to our bookshelf.  After I yell "EW, EW, EW" Duane shakes the bookshelf and the mouse scurries out from behind that bookshelf back of our dresser.  Well, this is going to be one long night if we keep this up.  I run downstairs looking for a mouse trap.  I run past Melina and her friends downstairs who were still up from their slumber party (and I was too distracted to care) as I announce, "There's a mouse in the house!"

Not a good idea.

I leave behind the "EW GROSS!  NOT SLEEPING ON THE FLOOR, MOM!!" searching desperately for something that would catch this mouse.  Nothing.  I head up to the kitchen and grab the only thing that makes sense to me... an empty bag of popcorn from my snack earlier that evening. 

Back upstairs, Duane is still armed with a broom in his underwear ready to attack this mouse.  I place the open bag of popcorn (with a few crumbs leftover) in the path the mouse had taken to get to the bookshelf and leap back onto the bed.  I reach over to the dresser and give it a shake.

Again, the mouse scatters by and runs right into the bag!  I watch in amazement as my husband starts banging the bejeebers out of this bag only to watch the mouse run right back out and back behind the dresser!!  Are you kidding me?  Is this houdini mouse or what??

"How on earth did you not kill it, Duane??"

I shake the dresser again... nothing.  Ew gross, did this thing just crawl back there and die??  I start slowly pulling out each drawer of the dresser with my heart racing as I half expect this mouse to scurry over my hand or something.  But the last thing I want is to reach in for a clean pair of underwear one day only to mistakenly grab a dead mouse!  Oh yuck,  just thinking about it gives me the heebadee jeebadees!

Drawer number one... nothing.

Drawer number two... nothing.

Drawer number three... nothing... and so on so forth.

We use the broom to sweep inside the dresser frame and no sign of this mouse anywhere; however, I did find a tiny crack between the old baseboards and the wall.  But surely nothing could fit through that??  Then again...

The rest of the night was met with fitful sleep as my super sonic ears listened for the pitter patter of Houdini's tiny feet somewhere in this house.  Another nursing session left me uncomfortable as I sat in the rocking chair nursing Sivana in the dark with my feet off the floor! 

A few weeks have passed and still no sign of Houdini (although he did make his scratching presence known just beside my rocking chair one night... thankfully, inside the walls).  And somehow, reading the kids rhyming books about fox in the box and mouse in the house are not terribly comforting at this time. 

Here's hoping this finds you doing well and rodent-free!  And if you have any advice on how to catch a mouse that does not involve peanut butter, brooms or popcorn, we're all ears (no pun intended)!

Thursday, 2 December 2010

A real smart little cookie... organic, cookies (of course!)

This boy is truly inspiring in his motivation to find out where his food comes from and what he wants to do about it.  Duane and I delighted in his knowledge and wanted to share it with you, too.

Hope you enjoy watching this home-schooled young man!