a little crafty nest

moments from the week

Lots of outdoor time this week, though our best day went unrecorded.  In fact, it was our best day in weeks!  We visited another homeschooling family who live directly across the river from us and so we naturally call them, The Boys From Across The River.  We visited their homestead and it was such a perfectly wonderful afternoon, none of us wanted it to end!  The sun shone in a cloudless blue sky, the snow was so strong and icy, we walked on and on over hill and dale without breaking through.  The six children and us two mamas saw an eagle, ducks, and six swans!  The littlest two boys played alongside each other at the river's edge, content in their own worlds, shoulders nearly touching.  My daughter tried to keep up to the three older boys who ran and hollered and investigated and spied...it was sheer delight!  And, sadly, not one single photo.  This wonderful afternoon will be embedded in our hearts for weeks to come!

However, there were some photos from outdoor play around here...

A visit to our neighbour's horses.  Danny-boy is so beautiful, and becoming so friendly with my children.  Forrest is teaching me how to feed him properly so your fingertips don't get nipped.

This is how we travel for a winter's walk.  I pull littlest (or two) in the sled, though I'm trying to encourage Sunshine to walk more.  This day, she walked the whole way, although we had to turn around far too soon as I didn't prepare for all her activity and she had a diabetic low.  Usually, I have a juicebox, crackers, and a banana with me, even to just cross our creek into the meadow on our own property.  I don't know what I was thinking to venture so far from home with just a juice!  Here she is doing what she does rather frequently lately, sipping a juicebox to bring her back into range.  I never would have thought I would feed my children juice boxes, let alone several in one week!!! 

We ended up turning around at this point, a 15 minute walk home.  It was a beautiful day, clear skies and crunchy snow.  Little signs of the seasons changing are becoming apparent...birdsong, creeks murmuring, and even pussy willows peeking out!
With all this spring anticipation, Huckley heads straight to the sandbox while I look for snowdrops beneath our beloved oak tree.  We will have to wait a bit longer, which is just fine, as usually the snowdrops don't arrive for another few weeks yet. 

I used our shovel to clear an area for Sunshine to get back on her swing.  Oh, does she soar when she is in her happy place!

And finally, the tooth fairy has made not one, but two appearances here in the span of three days!  Forrest's top tooth was dangling about for weeks, and the night before Valentine's Day, it popped out.  I still have to take a photo of him with both top teeth out, which is so darn cute!!!  I'm having a hard time not smiling when he speaks right now...it is simply adorable!

And yet another wondrous thing...Forrest found his mama-made hat from the fall!  He wore it for two weeks or so in October and then it disappeared.  I usually don't worry too much about this, knowing it will eventually show up, but this time, after one month, then another passed, I sadly dismissed it as truly lost.  I really liked this hat ~ my favourite on Forrest so far.  Well, we were in town at the toy store, of all places, and Forrest came running over to me telling me he spied his hat...it was behind the cash register and had been for four whole months!!!  Oh, lucky day!!!  However, in four months my son's head sure did grow and so now, this hat has been handed down to Huckley.  But what matters is that it's all in the family, right?

Have a wonderful weekend, dear friends!

moments from the week

The January cold snap arrived this week, with a pile of snow...and more on the way!  It was easier getting the children outdoors, with all the fresh powder possibilities beckoning. 

Lots of skating at the local outdoor rink behind a little restaurant near us.

Yesterday we arrived long before our homeschool friends and the ice was covered in a few inches of fresh snow.  Using a shovel, we made a series of meandering trails to skate along ~ perfect for playing "tag".  My sweet girl is now skating on single blade skates and her sense of balance is incredible.  In her very own Sunshine fashion, she refuses to use a chair for support, but insists on doing it her way, at her own pace.  This is her third day skating, and she is now beginnng to glide.

And this eager, active boy is so happy to be playing hockey!  Hard to believe two weeks ago he was using the chair for support.  It is a real testament to homeschooling as we have been spending a lot of time here during the week when most of the local children are in school.  I have felt really good about it, knowing that my six year old simply wants to be active...all the time!   Some days we skate with just one other homeschool family, wth six little people on the rink...and other days we are here when there are more than forty people on the ice!

Last weekend, we had our diabetes trainer come visit our home to set up Sunshine with one more piece of technology.  I think I'll save the details for February's Pink Elephant, though I will share that in less than one week we are seeing the benefits of using the sensor, a continuous glucose monitoring system.  It has taken us several days to get used to all the bells and alarms that ring, but it is worth it! This is a photo of Forrest playing with Lenny the Lion's pump and sensor.  Diabetes nurses use this stuffie to help the little ones feel more comfortable with injections and needles, and indeed, it works! 

Housekeeping in the little playspace beneath our stairs.

Playdough pie...just like mama's.

Inventorying our seeds from last year to get ready to make some orders soon.  With all this fresh snow, it's hard to believe it's almost time to begin our starts.  Though, if the truth be told, I'm always thinking about the garden ~ all year round!

Adventures in a boat in the middle of a lake.

I'm not sure words are necessary here.  It speaks directly to my heart.

 Friends, have a wintery, snowy weekend full of fun!

What are your moments from your week? 

pink elephant ~ january 2012 ~ 365 days later

Our family's "elephant in the room" is a pink one.  Our 3 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition

So very much may happen in the space of one year.  I look at where my family was 365 days ago, and it seems surreal.  That other life.  The one I often wish we had again, but I have slowly learned to let those dreams slip away.

I have been dreading this day for several weeks now.  Well, actually, I think for months as I have been counting the months since diagnosis, tallying them off like little signposts marking where we have journeyed from, and how far we have to go.

I have wondered how to mark this day.  Some families have a party, some don't bother to acknowledge it at all.  Many grieve all over again, like me. 

I look back over this year of struggles and of tears, and yes, there have been some small triumphs.  These little gems of success that I hold like treasures in my heart.  Rather than easily slipping into melancholy all over again, I want to remember what we have gained this past year.

First and foremost, I feel so enriched by the people in my life who have held me up and kept me from toppling.  My family has been very helpful to me, and has actively begun a lifelong campaign to find a cure.  I have also been blessed with some new friends, many whom I probably will never meet in person.  But their friendship is a beacon of light to me.  They understand what my family is going through because they, too, are going through it themselves.  Whether it be through Diapers and Diabetes or through this humble little blog, I have met some strong, wonderful, compassionate people who have reached out at precisely the right moment.

In the hospital, we were told that the pokes would get easier.  Having a fear of needles(maybe even a phobia) since childhood, I was absolutely doubtful.  It took me three days to do my first poke on my daughter, blinded with panic and tears running down my face.  Hard to believe now as Sunshine will nonchalantly stick her finger out to me as she carries on a conversation with her brother, or continues to read a book, or even in while she is drifting off to sleep.  Though, she still tells me, almost every time, "Oooh, that one hurt, mama"!  I've done a little math and that amounts to about 5500 pokes endured over these last 365 days!

Countless times in the hospital, we were told by doctors, nurses, social workers, friends, family, and other families living with T1D that life would be so much better in six months.  I held onto that number, waiting, virtually holding my breath.  Six months came and went, and it still was so hard.  That was when we got the insulin pump and it felt like being diagnosed all over again.  Hell is not too strong of a word for what life felt like then.  But then, at nine months, ten months, I felt...ok.  I realized I wasn't crying every day.  I realized I wasn't worrying constantly.  I realized we were venturing out more often.  I realized life was becoming more normal.  They were right, those know-it-alls!  Thank goodness, they were right.

Perhaps the most dramatic change over the course of the year, is within myself.  No one else can see this change.  Just me.  I notice that I am having the power to turn off my emotions if I feel a surge of sadness heading my way.  Rather than let the tsunami tear me to pieces, I simply say "Nope.  Not right now, thanks.  I'm not up to drowning right at this minute.  Try again some other time, buster."  Anyone knowing me at all would understand why this is so significant.  I'm very, ahem, easily persuaded to let my emotions run amok.  My whole life I've been told I'm too sensitive, too dramatic.  Well, that may still be the case, but I can at least tell when I'm ok to let the floodgates open, and when I need to shut 'er down.  It's a self-preservation thing.  I know when I should stop researchin, or when to tune out the latest anecdotes in my support group.  If I open myself up to my emotions, it makes for a looooonnnnngggg night, and an even longer day parenting.  I just can't do it...all the time.

365 days later.  We are all a year older, a lot wiser, and a lot more knowledgeable.  I asked my children what they thought living with Type 1 Diabetes is like...

Forrest (6 years old) : "Sunshine sometimes feels good and sometimes doesn't feel good.  When she feels not good, she needs a poke.  That's when I feel NOT good."

Sunshine (3 years old) : "A long time ago, I went to the hospital.  I had an IV and lots of needles.  My mama and papa and brothers stayed with me.  I felt not good at the hospital...Having diabetes means I have to have pokes and boluses when I want to eat food...I like the pump because I not like needles.  Needles hurts sometimes."

Because we are homeschooling and live a fairly sheltered life, the children don't really know any different.  They don't really talk about being "sad" or "mad" about diabetes.  Once or twice Sunshine has asked me to make it go away, but it isn't much of an issue.  She seems to accept her condition, at this point in her life.  The future holds many more challenges, and triumphs, but I think I'll turn my mind away from that whole tsunami for now.

365 days later.  It's good to be here with my family.  I have so much to be thankful for.

pink elelphant ~ december 2011 ~ extraordinary people

Our family's "elephant in the room" is a pink one.  Our 3 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition

It's been a while since I posted a pink elephant.  I had wanted to do this post in November which is World Diabetes month (there is also a World Diabetes Day (November 14), too, I found out by accident...which is rather fitting as it seems we are discovering most things about Type 1 Diabetes by trial and error, word of mouth, and sheer luck).  Yes, there is a (growing) community of us T1D families who hope to bring awareness, compassion, and education to the world about Type 1 Diabetes...in hopes of a cure.  We are a sort of "club" with members from all walks of life, with varying values and interests and lifestyles.  But we all have a loved one diagnosed with Type 1 Diabetes.  We are a club in which none of us wants to be a member.  But here we are.  And onwards we trudge...sometimes with grace and optimism, sometimes with frustration and heavy hearts...but always hoping for a cure.  Always.

For this month, I thought I'd let a few of these amazing people tell you how they feel it is to live with Type 1 Diabetes.  One is a close friend, the rest are part of my on-line support group, Diapers and Diabetes.  When I first joined in the summer, there were six of us.  Now we number 53 and counting.  Here's what they want you to know...

Zane is four years old

Lisa :  I would like people to know and refer to Zane that he has Diabetes not that he is a Diabetic - this diagnosis was life defining, but does not define who he is. I would also like people to know that he can eat anything that you or your child can eat, he just needs insulin to cover it, please do not treat him any different because he has this. People should also know he is the bravest little man in my life!

*     *     *     *     *

Monica :  I would like people to know that this doesn't just affect Josephine, it affects our whole family. It made us pull together to support one another. It has made the bond between her and her older sister Isabelle grow, I have always wished that they would be best friends, I think through this they will be.

*     *     *     *     *

Kaylea is 4 years old.  She was diagnosed at 1 year old.

Kaylea  :  Diabetes doesn't mean I can't have sugar, it means I have to ask first.
I don't look sick on the outside and people don't understand how diabetes can make me really sick and I get shaky.
My dog helps me because she knows before I get sick.
I have to wear my pump all the time . It gives me insulin and keeps me alive.

*     *     *     *     *

Paul :  Got diabetes when I was 15, I'm 44 now.
Living with T1.........From the perspective of having it but also from someone who worked with T1 kids and adults at a summer camp for diabetics. The big thing to know is that, for a kid and most adults it's impossible to be a perfect diabetic. For most kids, myself included, high blood sugar became synonomous with "Being in trouble". You try your best and you test lots so you can fix high blood sugars, but you don't dwell on the always (for me anyway) depressing fact that your sugars got that high to begin with. As far as living with it today, I've seen it get way better in terms of technology and knowledge so I can certainly see you getting your wish to tell Sunshine that she USED to have Diabetes.

*     *     *     *     *

Brayden turned 3 years old in October.  He was diagnosed at 14 months old.

Carilyn :  When I think about what it's like to have a child with T1.....hmmm. I think of Type 1 not as something I have, but it's certainly what I got in life. I say to Brayden "Everyone's got something." I have asthma, Daddy has bad hips, our dog needs eye drops and you need shots every day. It doesn't matter what you "got" in life, but it's what you do with it that matters." My brother told me that Brayden's diabetes will never hold him back, and that it should never hold me back, either. I think having this disease in our lives is such an opportunity and like the loss of my sister, I just can't dwell on anger and resentment or else I know it'll destroy me.

*     *     *     *     *

Each of these sentiments speaks directly to my heart.  All of these folks are regular people, living with an exceptionally challenging situation.  Out of the ordinary comes the extraordinary.  Each and every one of these people are extraordinary.

a few special moments

In November, at winter's gate, the stars are brittle.  The sun is a sometime friend.

~ Cynthia Rylant

And yet, in November, when that first snowfall quietly and completely transforms the yard that we know so well, then there is a whole new world beckoning us outside, waiting to be discovered, explored, and even tasted!

We also have been reminded of November's darker side...the drearily short days where the brittle cold snaps at us to stay indoors.  With a little transformation of some of the play areas, old toys become new again.

The magic of fairy-tales sheds new light on everyday objects.  Rumpelstiltskin inspired Forrest, and then his brother and sister, to experience one of Mama's spinning wheels.  I do believe the rhythm of the wheel mesmerized each of them into a quiet stillness...round and round and round...whirr, whirr, whirr...learning to take turns has never been so effortless.

Along with the snow and the cold keeping us quiet, my sweet little girl came down with a very very high fever, lasting three or four days.  On the fourth, she broke out in the pinkish lace-like rash of roseola...so common in early childhood.  My dear Sunshine has been uncharacteristically quiet and still as the sickness overwhelmed her spirits and body.  Tonight is the best she has been in seven days, with the rash fading and her health resuming.  Gratefully, her BG's (blood glucose) have been mostly in range...very unusual for a sick child with Type 1 Diabetes.  Her big brother has been especially doting, helping monitor her BG's and "reading" to her to keep her company.  Oh, how I love them both!

And in November, there is no better month to learn how to fingerknit.  Using the wool he dyed in the summer, Forrest quickly began to fingerknit on and on and on.  I introduced him to it last spring, but it was really today that he soared with this new skill!  Oh, I do believe I'll be handworking in earnest with this boy very soon.

In November, I am reminded of the importance of our home-life.  Of how we treat each other, talk to each other, help each other, and love each other.  I am reminded of how much the atmosphere of the home resonates in each of our souls, shaping our days, holding our hearts. 

pink elephant ~ october 2011 ~ one night at a time

Our family's "white elephant in the room" is really pink.  Our 3 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

Living with diabetes is an adjustment.  There is carb counting, blood glucose monitoring, insulin "therapy", and lots of numbers.  There are mood swings, temper tantrums, unpredictable behaviour, and belligerance.  There are scales, measuring cups, conversion charts, and calculators.  There are band-aids, numbing cream, syringes, and little glass vials.  There are tears, frustrations, fears, and hugging.

Every single day.  Every single hour of every single day.

And then there is night-time.  Dealing with stressful situations on a continual basis, you'd think that a good night's sleep would ready you for the next day of being a pancreas for your beloved child so she can live to see the sun set.  There is no room for making mistakes. 

Did you know that diabetes does not sleep?  Not ever.

To manage Sunshine's diabetes properly, we must monitor her blood sugars throughout the night.  One of us checks on her at 9:30pm, 12:30pm, and 3am.  Every single night, for the rest of her life.  I can't even think about how this will happen when she is living away from us.  But for now, my husband is the one to do this task as I am still night nursing our one year old.  Sunshine sleeps alongside me in a "side-car" bed and I almost always wake up, too, asking what her numbers are.  If they are in range, I usually fall asleep until my baby wakes me up to do his marathon nurse at 5am.  Otherwise, that is sometimes all the sleep I get for the night.

If Sunshine's blood glucose (BG) levels are too high, we "bolus" her with more insulin, as suggested by her insulin pump.  Then we must check her at least every hour to ensure her BG comes down.  It has been suggested to us to actually bypass the pump and bolus her with an injection from a syringe.  We usually don't do this as there is absolutely no way she would sleep through a big poke into her love handle. 

If her BG is too low, it is a medical emergency.  We must quickly rouse her from sleep, sit her up, get her to drink half a juice box, then let her sleep for 15 minutes until we wake her up a second time to follow the juice with a carb and protein snack. After all this, we help her go to the bathroom and brush her teeth. 

Have you ever tried to wake up a toddler or young child from a deep sleep and get them to eat food ~ immediately?  It is not a lot of fun.  She may be agreeable after some cajoling, but usually she refuses, lashes out, and screams.  Before the pump, this was happening about 4 or 5 nights a week.  Since the pump, it happens much less frequently, though as we get her BGs closer to range, it is beginning to happen again.  There have even been many times when her crying wakes up the baby and/or her older brother.  Thank goodness there are two of us to deal with it all.  I'm nervous about the winter months ahead with Josh getting back into his ski guiding work and being away from home most of the time.  I have absolutely no idea how to get through it all. 

One day at a time.

One night at a time.

And when the sun stretches into the room in the morning, every morning, there is my girl, grinning up at me, whispering, "Mama, I love you so much!"  This is my faithful wake up call.  She is my wake up call.  To enjoy every single moment with her, with all three of them. 

One day and one night at a time.

 

 

a few special moments

We've been trying to get on top of so many autumn projects that are scattered higgeldy-piggeldy around our home.  Between harvesting, stocking up, putting the gardens to bed, renovating and finishing Forrest's bedroom, getting firewood, and homeschooling...life has been busy.  But busy in a good, productive way that has a lot to show for the late nights, lack of sleep, and messy kitchen.

My ever-present and faithful gardening companion is helping me put our kitchen garden to bed for a long winter snooze.  I am so grateful for her green thumb and her Virgo Moon.

A second visit from the tooth fairy in ten days.  I must say I am simply shocked at how big he seems, and at how fast he's losing his teeth!  There's just no time to pause, reflect, and savour anything about this.  Now the top two are becoming a bit wiggly!

Hmmm, how did this littlest one get to this stage so quickly?  He nearly leapfrogged over a whole developmental stage by forgoing the high chair and insisting on the booster.  Why are they in such a hurry?

This week there has been a lot more dentist play and diabetes hospital play.  Forrest is both the dentist with his mask on and a diabetes nurse giving an insulin shot.  It is really rather interesting overhearing their conversations while they play these games.  Forrest regularly asks Sunshine "what is wrong" with her and she tells him all about her diabetes.  He pretends he doesn't know what diabetes is and so she explains it to him.  Then he asks her all sorts of questions about what she can and cannot eat.  Sunshine is always responsive when they are "playing" diabetes nurse.  She never seems to feel sorry for hersrelf or complain about her condition ~ she uses the same tone as if she were describing what her dog looks like.  Funny, when I overhear them talking like this, my heart always leaps into my throat!  Is this really our life?  Is this really what my three year old is dealing with?  It all still feels rather surreal.  I'm so grateful for their therapeutic play.
Sometimes, by merely changing furniture around, a whole new space emerges that was never used before.  We tossed our old, lumpy futon and made a handwork corner.  The futon, while long past it's comfortable lifespan, had a little nostalgia for me as all three of my babies were born on it in this very corner of our home.  But what better way to get over sentimentality than by indulging in some handwork?  My first spinning wheel, a used Ashford, was brought downstairs with the high hopes that I will spend some time using it this winter.  I am very much a beginner spinner, but it is yet one more handworking addiction that is quietly calling to me.

  Oh, he laughed and laughed and laughed when he put these on!

We don't get many visitors around these parts.  But when we do, you can be sure these three are pressed up against the glass door in anticipation.  It's better than any doorbell I've ever had.

Happy weekend to all!

pink elephant ~ september 2011 ~ the boys

Our family's "white elephant in the room" is really pink.  Our 3 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

I remember very little of our stay in the hospital.  I do clearly remember thinking all the doctors and specialists were misdiagnosing my daughter and soon they would realize their mistake and sheepishly tell us we could go home.  Go back to life as we knew it.  Well, it took me two full days of this until it all really sunk in how life as we knew it was over.  A whole new life had begun, whether we liked it or not.

Family and friends who visited us there, and afterwards, often ask how Sunshine is doing, how we are coping.  Very few people think to ask how the boys are faring.  Afterall, their world has been turned upside down as well, particularly our older son who remembers life before diagnosis.  Now, we think twice about what and how to feed him when he exclaims that he is hungry.  Sometimes, we talk him out of healthy snacks like raisins or granola or muffins or a sandwich, just because these carb-rich foods are not at the right time of day for Sunshine.  Sometimes, he feels guilty and will quietly sit, hidden from Sunshine's view, so he can enjoy a peach.  His language around mealtime involves words like "insulin", "bolus", "carbs", and "blood glucose".  Forrest is five years old.

 
Diabetes may have affected our three year old's body, but it has impacted each of the five of us.  There is little flexibility in mealtimes and we think twice about going to potlucks.  We changed Forrest out of his soccer group so we could be home for our regular dinnertime.  When we go to town, we often eat sandwiches in the car rather than going to our favourite bakery restaurant because we can't count the carbs in any of the meals.  I know all this will gradually change with time and with learning more about how to properly utilize Sunshine's pump, but for now, our lives are regimented and dictated by diabetes. 

 
As a mama, sitting here writing these words, tears are silently falling.  I've been putting off this post for a long time, probably because I know in my heart that we are all feeling the impact of this condition.  My heart is so tender when I see Forrest volunteering to hold his little sister's hand when she gets a set change and her needle is being inserted.  How far he has come over these past several months when her screaming would send him running to hide in the pantry.

 
Recently, I came across a blog written by a woman who grew up with a sister with Type 1 Diabetes.  This woman is married with her own family and she writes what her life was like living with diabetes in the family.  She doesn't paint a pretty picture.  She holds a lot of resentment to her parents for being so worried and stressed and concerned with her sister.  Perhaps this woman has a lot of other issues going on, but it struck me that it was such a monumental experience she felt the need to create a blog about it.  And so much of what she says are my greatest fears...stifling my boys, making our lives secondary to diabetes, and preventing us from living a normal life.  It is a tricky balancing act, and I know I have to be forgiving of myself as a parent.  I will make mistakes, as we all do.  I will do things I will regret, as we all do.  It has only been nine months, and I know it will all get so much easier.  Right?

 
To be honest, my biggest fear weighs on me daily.  Not a single day has gone by that I don't worry that Forrest or Huckley will get diabetes.  Daily, I check Huckley's palms for the unmistakeable sweet scent of strawberries that Sunshine exuded for over a year before her diagnosis.  I quietly monitor how many glasses of water Forrest drinks in a day and how many times he visits the bathroom.  Almost twice a month I do a random blood glucose check on each of them.  So far, they have both been normal, even though I sometimes smell strawberries on Huckley.  It's not easy checking Forrest's blood.  He has a justifiable fear of needles, despite never having had one in his life.  I've heard countless times that siblings only have a 10% greater chance of developing diabetes...but why do I keep meeting people who have multiple children with this condition?! 

 
So how am I to cope with it all?  How do I stop worrying, obsessing?  How do I ensure that my boys will look back on their childhoods and say that it was normal, and oh yeah, Sunshine had diabetes.  How do I ensure that their childhood is not like the one that lady with the blog experienced? 

 
One day at a time.  That's all I can do right now.  Every day is truly a gift and it often takes almost all of me to see it this way.  The tears aren't shed so often anymore, but when I sit down and really think about it, they easily flow.  I remember hearing, back in January, that when a child is diagnosed with Type 1 Diabetes, the whole family is diagnosed.  Indeed.

pink elephant ~ august 2011 ~ struggles

Our family's "white elephant in the room" is really pink.  Our 3 year old daughter was diagnosed with Type 1 Diabetes in January 2011 at the age of 2 1/2 years old, and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

The last time I checked in with the Pink Elephant, we had just gotten Sunshine hooked up with her insulin pump.  Fast forward eight weeks and we now have a better idea of what to expect with this little piece of machinery we have become completely reliant on.

 
Friends, this has not been an easy road.  We were not expecting to throw our toddler back into the throes of the days leading up to diagnosis.  Our so-called "diabetic team" wanted to start Sunshine on really conservative doses of insulin.  A good idea in theory, but the really conservative doses were so, um, conservative, that she went back into DKA a few times.  This is diabetic keto-acidosis in which her body fails to synthesize the sugars inside of her, and basically poisons her system.  The result is a lethargic, miserable, complaining, aggressive, sick little three year old...24 hours a day. 

Sunshine sleeps in a "side-car" bed beside me, and we were waking several times a night to screaming, sobbing, and nightmares.  In addition, she was waking to pee and drink water.  This is unusual as Sunshine is normally a very peaceful, calm sleeper who will take forever to fall asleep, and then stay asleep until morning.  This dragged on for five and a half weeks!  Absolutely, positively, guaranteed the most difficult weeks of my life.  Needless to say, it has not been the happiest of homes in these here parts.

At one point, I called the aforementioned "diabetic team" in frustration  and said that a BG reading of 29 with 5.6 ketones doesn't seem right at 5 weeks into the pump.  (To put this into perspective, her BG target is between 6 and 10 and there should most definately not be ANY ketones).  I was told, in a very intolerant, put-out tone that I should not be expecting perfection.  Hmmmm...both Josh and I feel, well, why not?  This is our daughter.  Our main parent support is with Mark and Shelly whose five year old daughter was diagnosed at 14 months.  Mark, a former Olympic snowboarder and now the Canadian Olympic snowboarding coach, really believes that because we are basically our child's pancreas, we should always aim to mimic a normal functioning pancreas.  Only then will our child feel good, be healthy, and not think about her condition.

Well, the turning point came at six weeks when Josh sat down and spent hours figuring out Sunshine's insulin needs.  He set her up with five different insulin rates each day and we ignored the "team" and began to bring her into range on our own.  Finally, life became bearable again.  Finally, our child began to smile again.  Finally, I wasn't thinking about insulin and BGs and DKA and kidney failure and blindness every moment of the day.  Finally.

The pump is a pretty amazing piece of machinery.  I was reluctant before we got Sunshine hooked up for many reasons, but now, I can see there is no turning back.  Our rigid meal schedule is more flexible...within half an hour.  It seems more than that and there can be setbacks with high readings resulting in the reappearance of the ornery girl who is angry at the world.  I don't blame her!  So we keep to regular mealtimes and snacktimes (we skipped a snack once and again, not fun!) but we can give her homemade popsicles without worrying too much.  The pump also allows her to eat more of how she feels rather than how much insulin is in her.   
When Sunshine wants to swim or bathe, we simply detach the pump and insert a lock on the opening in her tube.  We usually leave it detached for no more than half an hour, though we are told it can be up to an hour.  The top left circle is her "sticker" which acts as a safety in case her pump falls, it won't rip out of her body.  Although, that has happened twice already.  The bottom right circle is where her needle is inserted, into the fleshy part of her love handles.  We tried putting the needles on her belly, too, but she says she feels them when she bends over. 

A big struggle for me is the visibility of her diabetes.  Suddenly, tubes and the pump are visible to the world.  Before, injections could be handled discreetly.  Twice we've heard some forward comments, both by innocent children, and each time they felt like a physical blow.  But I smile, and explain Sunshine's condition, pointing out that she is really a very normal little girl.  It is a good lesson for me as we want people to ask questions, we want our daughter (and sons) see us handling the well-intentioned queries with a positive, informative response.  We want them to see how normal it all is.  One day I hope I'll see it, too.

 
We were concerned about Sunshine sleeping with her pump connected, which it must be.  How will she sleep with that little computer attached to her?  Also, how will we be able to cuddle or rough-house with her?  Well, actually, it has never been an issue.  Sometimes she will mention that it needs to be moved, "Mama, my pump!"

As for our little Sunshine, she continues to move forward, refusing to let anything stop her.  Not her brothers, not her parents, and certainly not her diabetes!  Now that life is balancing out (in some respects) it's allowing us a little more freedom to do more things, to be more adventurous.  And with baby steps, or rather, with three year old steps, we are learning to integrate all this change.

 
I'm certain there will be struggles ahead, as there are for everyone, but with each struggle we overcome, I swear we are getting stronger!  As a family, we are working through this tough time, one day at a time.  And to see her smile again...it brings a little peace to my heart!

a few special moments

I've been feeling rather quiet these last few weeks, as life has been overwhelming lately.  Not to worry, though, I'm still here.  And I'm oh so very grateful for the kind souls in this world that reach out to offer love and support...exactly when I've been needing it most.  Thank you all so very much!

Looking back over the last week, there has been a lot of wonderful moments in between the challenges.  Including...

 
...cherry pitting season.  The worms got most of our cherries, but there was a handful to freeze to make a mid-winter cherry pie!  Again, my two oldest children prove to be good labourers!

 
...magic shows!  Forrest is thrilled to discover his sister is mesmerized by his talents as a magician.

 
...an especially good basil year.  We have been pesto making regularly, storing it in muffin cups to freeze.  I usually add the garlic and parmesan fresh.  We planted nearly 40 basil plants, and we eat it fresh daily, freeze it as pesto, and dry it for a gallon jar to add to sauces all winter long.  If anyone would like to swap seeds, I will have a ton of heritage Lettuce Leaf and Genovese and Lemon Basil.  All are organic. 

 
...beach days.  This little girl is definately a water baby.  Whenever we drive by the river or a lake, she exclaims that she wants to "be in there right now!"   With her pump always worn, for twenty to thirty minutes, we simply just detach the main pump itself, and clip a plug on her sight that keeps the needle under her skin.  Her long bathing suit top keeps her sites discreet, though we are trying hard to embrace the stares, the questions, the kind-hearted queries.  It's important to maintain normalcy around it all, so Sunshine will grow up feeling like it is normal.  Some days are easier than others.

 
Forrest and his snorkel.  He loves to wear it, in the lake...and in the house.  He is really becoming comfortable in the water this year, despite ditching swimming lessons (the lake was too cold last week)!

 
...a little sibling love!  This summer we have spent so much time indoors because of the mosquitoes, and it has been a real test of everyone's level of cabin fever.  Fortunately, there have been many moments like these ones, where the company of a brother or a sister is a real blessing...even if it lasts only ten minutes.

Have a great weekend, friends.  I hope you are enjoying your summer with your families!

felt painting from the heart

It might be debated that when a person loves to journal, they love the art of language.  The ability to capture the essence of one's emotions, however fleeting, with a few chosen words, may often be a gift worthy of volumes and volumes of journals and diaries.  For me, this is true.  I have carted around many of my documented emotions and events for over 30 years.  Like an old friend, they stand by me, reminding me of the girl I once was, of the small dramas that starred myself.

For each of my children, I wanted to create something just as memorable to capture that feeling, that essence of their past year.  I once thought I might quilt them a square to later be made into a wall-hanging, for them to enjoy in their own homes later on down the road.  Until I came across a beautiful "painting" in which the artist used felt. 

For Huckley's first birthday a few weeks ago, I made a turtle for him surrounded by four little fishies. 

 
The turtle has become a bit of a symbol for my dear littlest boy...for now.  When I made him his baby quilt, the turtle and the fishies were there, swimming along.  I think I could make these felt paintings really detailed, but they were a simple gift, made in very little time.  Somehow, this is just perfect.

Miss Sunshine celebrated her third birthday, and as many of you know, this has been a very challenging year for my little girl.  That first night in the hospital, amidst all the surreal drama unfolding, I quickly sketched a little guardian angel for my sweet girl while she looked on.  I tacked it beside her hospital bed so she had something to gaze on other than the IV drip, the tubes, the computers, the very sterile atmosphere that became our home for the next ten days.  So this past year is represented by that very same guardian angel.  I know she's there, too.  She saved my baby girl once, she won't leave her now!

 
(The truth be told, I preferred the hospital drawing to this one...it was much more spontaneous and lovely)!

In Sunshine's room, her first three felt paintings hang together...just like a quilt.

 
As my children grow, their wall "quilt" will grow, too.  Each year, a new felt painting will be added, making a patchwork quilt of their life on their bedroom wall.  Sometimes, words are not needed to capture the essence of emotion.  Sometimes, it just has to come from the heart.

box of treasures

My three year old daughter is not much of a dolly girl.  Oh, I've tried, believe me.  She shows some interest for a few moments, and then moves on to more action type play...like trucks and motorbikes and see-how-I-throw-the-dolly.  I have to admit, I'm a little sad about this.  I know, I know, honour who she is and what she likes and don't force her into a mould.  But, really now, I am a dolly girl. 

As her third birthday approached, one of her most requested stories at bedtime was my recollection of dolly play when I was a girl.  The old-fashioned school set up in my basement, the high chair I got from St. Nicholas that my sister thought was meant for her, the doll I painstakingly made walk every step to Kindergarten a whole two blocks away.  She especially loves the high chair story and so that is why we gave her a dolly high chair for her birthday ten days ago.  She loves it.

And the hand-made presents we made for her grew out of those stories.  
Josh made her a cedar treasure box that I filled with dolly clothes.

 
Sunshine has a very special doll made by my dear friend who owns maplerose.  I have been saving the doll for a few years, until Sunshine was old enough to care for her properly, or until she ever became smitten with dolls.  Both of those reasons went out the window when Sunshine was diagnosed with diabetes in January.  Josh went home on our second day at the hospital to gather clothing for our family and I asked him to find the doll at the back of my closet. 

  
She was great comfort to Sunshine in the hospital, but soon after settling back at home, she was rejected.  I think Sunshine associates that really horrible time in her life with this doll.  So...Maya (as she came to be known) was given a wardrobe change...a whole new look to hopefully spark renewed interest.

 
I had such fun sewing these little (pink!) outfits from scraps of Sunshine's own clothes.   

 
 
 
Maya's sweater is a pattern by Shelly (waldorfmama) found here.  It was such fun designing and making Maya's wardrobe...it sure came together a lot faster than sewing for bigger babies!  And all three children were pretty excited by the box of treasures...

 
There's been a lot of dolly play since Sunshine's birthday.  And even if my daughter never becomes a dolly girl like I was, I know in my heart that is just fine.  The comfort she provided my girl in the hospital is beyond priceless...and for that, Maya, I will always cherish you!

 

her pink party dress

Sunshine wanted a pink birthday this year.  She's been waiting 10 months and 3 weeks for it!  Pink balloons, pink plates, pink straws, pink cake, pink food, and all of us had to wear pink, too.  Of course, she needed a pink party dress to wear on her day.  I sewed this up from a pattern, adjusting to accomodate her insulin pump, and choosing to size it a little large.  It will definately last her a long, long time. 

 
I never thought I'd have a daughter so into the colour pink.  Then again, I never thought I'd be so into the colour pink because my daughter loves it so.  But it's true.  I've fallen in love with several shades of pink...you know, not the neon plastic hue, but the soft, peachy, rosy pink that whispers of gentle kisses and sunwarmed peaches.

 
Kind of like my girl.  When she arrived into my arms, she looked like a sweet, rosy peach with her white blonde little downy fuzz on her forehead and the nape of her neck.  It's no wonder she generates little sparks of excitement whenever she discovers something pink. 

 
I love that my children unintentionally and magically persuade me to embrace something I was sure I wouldn't like.

 
Because when I look into her eyes and feel her body fairly buzzing, pink is indeed a wondrous thing!

(Unfortunately, these are the only photos I have of my girl in her new dress.  It is moment's before her party begins and she was not feeling very good as her blood glucose levels were out of her target range.  Last night I decided not to post them as she looks so unhappy.  But tonight, I realize that this is where we are at in our life.  She has been feeling this way for a month now while we figure out her insulin pump.  It has been the longest four weeks of my life...I can't imagine how she feels.)

sunshine's pink birthday

My sweet Sunshine turned three on Friday and we sort of extended her day over the weekend.  (This may be unbearably boring to those of you who visit regularly as we just celebrated little Huckley's first birthday here, and it may be redundant!)  However, these are moments not to be missed!

Sunshine awoke to walk her rainbow bridge around the sun...three times!  She was truly accompanied by rainbow fairies or her guardian angel...do you see?!

 
After a breakfast of her choice (strawberry pancakes and bacon), we loaded up the car and went back to the beach where we celebrated Huckley's birthday a few days earlier.  What a difference three days makes...it was so cold on the beach with the sun playing hide and go seek with thunderclouds, and rain sprinkling down. 

 
We had such fun!  Everyone was in good spirits...the weather couldn't dampen our celebratory mood!  Perhaps because this is what we are surrounded by...

 
After a campfire and a walk along the rushing creek, we went home to share dinner with my dearest friend and her family. 

The next morning, Sunshine and I made an angel food cake.  She loves to bake, just like her mama, and so she continued to fill the "cupcake" tins with the leftover egg yolks.

 
Sunshine has had her insulin pump now for a month.  My hope was to be able to make the pink cake she was dreaming about for the last 11 months.  With careful carb counting, weighing, and a hefty insulin bolus (injection via her pump), my sweet three year old had cake on her birthday!  This is a milestone, indeed!

 
What you don't see, is that this was a really hard day for Sunshine.  We had three little friends over to share in her day, as we invite the same amount of children as the age they are turning to keep it from being too overwhelming.  It works great for Forrest who is super gregarious and the life of any party.  But Miss Sunshine has diabetes which gives her a real Dr. Jekyll and Mr. Hyde personality.  When her blood glucose is too high or too low, she feels miserable and it shows.  We are still trying to get her more regulated with her new pump, but it is taking sooooooo long.  On Saturday morning, I could tell her party may not go too well.  I was very stressed out worrying about my girl, seeing her being cranky with her dear friends, wondering if I'll ever have a daughter with a constant mood for more than five minutes.  I considered cancelling the whole thing, but she would have been so disappointed.  I learned, the hard way, that she needs a very calm, quiet way to celebrate.  She doesn't like to be the center of attention on a good day...let alone, when she is feeling crummy.  My poor girl...it will get easier...I hope!

Of course, after her cake, the children braved the mosquitoes and went out into the yard and Sunshine was really happy and playful by then.  Once all the children had left, we had a family dance party at the request of Sunshine and Forrest, and that always brings out the smiles!

 
(By the way, Josh is in definite pose mode)!

My daughter's birthday weekend was very full...and for the most part, it was a lovely time for all of us.  I really believe she'll look back and be happy with her Pink Birthday when she turned three.

pink elephant ~ june 2011 ~ faith

Our family's "white elephant in the room" is really pink.  Our 2 year old daughter was diagnosed with Type 1 Diabetes in January 2011 and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

For those who know me well, it comes as quite a shock that I have this little space in blogland.  Not because of the content or the creativity I'm trying to cultivate for myself...no, that part most of my close friends and family understand quite well.  However, the whole technological aspect of it is the surprise.  I am a certified luddite.  Correction, I was a certified luddite.  I am becoming fairly comfortable with the simple parts of the computer, but I still am uneasy with anything that is not straightforward.

So it is even more of a shock that our little two year old is now reliant on a mini computer to stay alive.

 
The long-awaited pump arrives, pink of course!

This little machine acts like a human pancreas, sending Sunshine insulin throughout the day.  Rather than two daily insulin injections (which would have soon become ten!), we insert a tube connected to the pump into her, changing the site once every two to three days.

Once the pump arrived, both Josh and I had to wade through a telephone-sized manual that seemed endless.  After a few more smaller pamphlets, we each had to do "pump school" online which took a few hours.  Only then could we meet with the trainer in person who led us through 3 sessions before Sunshine was hooked up.

 
 Sunshine practising, just before getting the pump attached.  Do you see her "list of groceries" she was making while we talked to the nurses?  My heart was heavy when I saw how controlled and precise her "lists" seemed to be. 

The pump will allow us to have greater blood glucose (BG) control for Sunshine.  When she is high, her longterm health suffers (kidney damage, eye damage, nerve damage, etc) and when she is too low, she is at risk of brain damage or seizures or worse.  Because the government in our province subsidizes pumps for children under 18 years old, it seemed like we had no choice but to get her on a pump...and the sooner the better.  With a person so young, her BG's were all over the place - daily!  With diabetes, there is never a "magic" number for a BG, but rather, just trying to keep it in a safe range.  That goes for those of us with functioning pancreas' too - it is constantly shifting depending on food, stress levels, time of day, growth spurts, etc. 

 
Just a few hours after her first infusion set-up, and she is very careful.  It hurt a lot as it is a metal syringe beneath her skin and if she bends over suddenly, it jabs her.  I'm hoping we can fix this soon!

Despite knowing that the pump was what we had to do for Sunshine, I still was emotionally reluctant.  We anticipated Pump Day for over two weeks before it arrived, coincidentally on Josh's birthday.  And this was near agony for me.  I tend to get worked up in advance of something like this...dentist visits, giving my own blood, any sort of confrontation.  So this was so very very difficult.  Now many people would think I'd be excited at technology and how far it has come, and I agree, reluctantly.  But mostly, I was savouring my little girl's perfect body...her belly skin that is still baby soft and will soon have scar tissue dimpling it all over.  Every night, as I helped her to sleep, I was giving her belly rubs and back rubs, crying into my pillow that she has to suffer through another traumatic event...and she is just TWO years old!  How does a mama cope with that?!

 
How does a two year old cope with that?  We'll see, I suppose.  When it was inserted at the hospital on Monday, I had to hold her down while Josh put it in.  I'm not sure who cried harder, but I do know she was the one running around ten minutes later, giggling and dancing.  Resilience, right? 

 
Sunshine practising climbing mountains.

For me, it's all about faith.  Faith in technology ~ which does not come easily for me.  Faith in a medical system ~ which I haven't entirely embraced.  Faith in certain medical individuals ~ who have repeatedly let us down. 

Faith that a cure will indeed be found.  Faith that my daughter will live a beautiful, creative, happy, long life.  Faith that this is the very best we can do for her.  Faith that everything will be all right.  Faith.

 
Parenting truly is a leap of faith in so many ways. 

Sunshine, I thank you from the bottom of my heart for teaching me so very much about faith in the human spirit!

 

a few special moments

 A few shapshots and highlights from our week...

 
With our creek running high and swollen, there are nearly daily visits up the mountain to the waterbox to replenish water flow to the house.  This is Forrest's first excursion with Papa to help fix the water problem.  I do believe he was walking a little taller when he returned!

 
My step-daughter turned 15(!) and came for a visit to celebrate.  The children adore her and believe that every household should have a Jessica!

 
Someone keeps climbing and climbing...and finding new things to climb.  He has yet to take a serious tumble (there are arms just out of sight of the photo), thank goodness!  Huckley has also taken a few steps here and there...bittersweet moments indeed ~ he's really moving into toddlerhood now!

 
Our Big Garden was finally tilled this week, to great anticipation by all of us.  We hope to build our first raised bed later this fall...one for everbearing strawberries and asparagus.  It's a slow process of milling cedar from the mountainside, building the bedframe (I'm thinking another spiral!) and then filling with soil.  All this during the mosquito season which is really really unpleasant around here for 6-8 weeks beginning any day now!  I'm looking forward to the work, though, and to enjoying the berries even more!

 
We began more intensive insulin pump training for Sunshine this week.  Pat, the diabetic nurse, came to our home to help us get more acquainted with a small pump that will supply our two year old daughter with insulin.  Basically, it's like a pancreas with bells and whistles.  There are many wonderful things about this machine, yet I am feeling such mixed emotions about it all.  There is a lot of relief that she will feel a lot better and that her longterm health will be better, and this is wonderful.  But, as a mama, my heart is aching and fearful and nervous and heavy.  This is a tough time right now for us, despite the health benefits.  Monday we head in to the hospital for Sunshine's first "hook up" to the machine, so please, if you remember, send positive thoughts her way.  I'll be back with more about the pump next week in a Pink Elephant post.

 
And lastly, we welcome little cousin Jacob into the world.  A darling and sweet blessing who we look forward to getting to know once he wakes up a bit more ~ but there's no rush, little fella.  We're waiting for you patiently!

What are some special moments from your week?

pink elephant ~ may 2011 ~ comfort and support

Our family's "white elephant in the room" is really pink.  Our 2 year old daughter was diagnosed with Type 1 Diabetes in January 2011 and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

It's been four months since our lives have been completely shaken up, tossed about, and turned inside out.  Last month, many people remarked that they were amazed at how well I seem to be coping with Sunshine's diagnosis.  It's interesting how blogland often has a rosy-tinted screen to everything.  In reality, I don't feel it's going all that well right now.  In fact, I feel like I'm treading water a few inches below the surface.  What people don't see are the dark circles under my eyes, the constant worry in my heart, the silent ache of it all.

 
I am finally realizing that I need to reach out and ask for some help.  This is one of the hardest things for me to do, and sadly, I have been denied help by those that I thought I could rely on.  So, I thought I'd pass on some insight into what might help if a friend of yours suddenly finds themselves experiencing the devastating diagnosis of a lifelong illness for their child.

• Do ask how she is feeling / coping / doing.  It surprises me how easy people want to avoid this most basic question, but it offers the mama a chance to validate her emotions.  This allows her to move forward in a positive way to cope with her child's condition.

 

• Do validate those emotions, even if they are uncomfortable for you to hear.  For some people, it is tempting to dismiss her real emotions by reminding her to "just consider how your daughter feels".  You can bet that your friend is thinking about her child every waking moment.
• Don't judge her coping process.  Shock, denial, sadness, fear, anxiety, anger, resentment, and guilt are a very real part of coping with a crisis.  Allow your friend to move through (and perhaps revisit) these aspects of coping.    I was actually told I shouldn't be grieving anymore, after just six weeks.  Grieving may take months, or may be revisited off and on over years.

 

• Do ask how you might help.  Surrendering to be of service to your friend is perhaps the greatest gift you could give her while she adjusts to her new life.  Imposing your opinions of how she might cope or raise her children is not helping...it only adds more stress and anxiety.
• Do offer your friend some time to herself, especially if she has more than one child.  Allowing her quiet time to process, or just to be still, is a tremendous gift.  Amazingly, this has been the most elusive thing I've experienced. 
• Do not impose your own expectations when you offer your help.  Again, surrendering to being of service is a beautiful gift.  While it may seem inconvenient or disruptive for even a half hour of your time, imagine the disruption your friend's family has undergone...for life!

 

• Do accomodate their lifestyle changes.  It's easy to avoid inviting them over for a meal or a gathering, particularly when their situation seems to overwhelm you.  But what they may need so badly is a change of pace, new scenery, a diversion.
• Do ask again (and again!) if your friend makes excuses not to take you up on your offer the first time.
• Do lend your shoulder...and the other one, too.

 

• Do ask to read any information (books, pamphlets, websites) relating to their child's condition.  Showing interest is a form of support, and clearly expresses your concern and love.
• Do ask questions.  There are no wrong questions, and it is the easiest way to learn.  I knew very little about Type 1 Diabetes when we first went to the Emergency Room in January.  I know a fair bit more, but I have a long way to go to understanding this condition.  The more people who know about it, the more we can prevent dangerous consequences from occurring, and the closer we are to a cure.
• Please, please, please do not tell your friend her child's condition is easy to manage.  Walk in her shoes for just one day, and then you will most assuredly have a different opinion.

We have been very fortunate to have family that could offer us some temporary financial relief so both Josh and I could be home for a while to adjust our family to our daughter's new condition.  We are so grateful to them, and to those good friends who have reached out and shown us what compassion truly looks like.

  

My heart is a bit more tender tonight as I write this.  I can still smell the lovely scent of my daughter from putting her to bed for the night.  As I cradled her in my arms, for the first time since being diagnosed I heard her whisper, "Mama, I don't like diabetes."  Oh, honey, why not?  "Because if I want an apple and I can't have it 'cause of the carbs, then my belly hurts and my eyes hurt and my head hurts...and then my heart hurts." 

Oh, my sweet perfect daughter, I so wish I could take it away for you.

 

pink elephant ~ april 2011 ~ for the love of food

Our family's "white elephant in the room" is really pink.  Our 2 year old daughter was diagnosed with Type 1 Diabetes in January 2011 and it has changed our lives forever.  Every month, I post a little update on how we are coping with her condition.

When Sunshine was diagnosed, many well-meaning friends commented that her diabetes would be no problem for us as I have always been so careful about how I feed my children.  In the past, there has been more than a few eye rolls when I declined a sugary treat or a glass of juice, and handed my children a chunk of apple or a carrot stick instead.  However, Type 1 Diabetes is very different from the more common and publicized Type 2 Diabetes...in fact, they have very little in common.  Type 1 is an auto-immune disease and so Sunshine could have been eating doughnuts and candy bars and it may not have brought on her condition.

Sunshine has always loved food.  Of my three children, she took to solids instantly and on that first sitting, she cried when she had emptied her bowl.

 
About a year old, awaiting more yogurt and mashed peas. 

With T1D, every morsel of food and drink that passes her lips must be assessed and accounted for.  Every.  Single.  Morsel.  This seemed so daunting when she was first diagnosed, but it is getting easier, just like They said it would.  Two essential pieces of equipment (amongst a long long list of essentials...who knew that diabetes is the most expensive condition to treat?) are the scale and the calculator. 

 
In Canada, it is mandatory for a company to list the nutritional analysis on the side of the package.  Where it lists carbohydrates, there are two subheadings, sugars and fiber.  We must subtract the fiber from the total carbs listed to obtain the amount of carbs in the listed serving size and then do ratios on our calculator to find the amounts Sunshine requires.  Both Josh and I have become experts at math work!

 
2 years old ~ pre-diagnosis

The carbs turn to sugars, which we all need to have fuel to function.  However, without her body producing insulin, these sugars essentially turn her blood into syrup.  If the sugar (glucose) levels get too high, she will die.  So we inject her with insulin twice a day.  With super uptight control over what she eats, she will live a fairly normal life. 

Sunshine is able to eat most anything she wants, it just has to be in small proportions at specific times and we have to supply enough insulin to counteract the food.  And not all food has carbs in it.  Cheese, eggs, meats, green veggies are all carb-free.  Luckily, most berries have minimal carbs and so this summer in the garden, a handful of berries is ok. 

Despite having a scale and calculator and a binder full of carb counting charts, her glucose levels continue to fluctuate up and down.  If we don't provide enough carbs steadily over the course of the day, her levels plummet and we enter the very scary zone...she can easily slip into a coma with convulsions.  There have been countless nights we have had to rouse her from a deep sleep to feed her crackers and jam or give her a juicebox to bring her glucose levels back into the normal range.

 
her second birthday, pre-diagnosis

The thing about diabetes is that it is constantly changing.  Growth spurts, sickness, celebrations all require modifications to her insulin needs.  This is such a humbling lesson for me as I thrive on routine.  Those well-meaning friends were right, it isn't a stretch to feed her well.  In fact, many people with T1D are the healthiest around as they are so careful about what they consume.  Perhaps the hardest part of the diet aspect of diabetes is that I often have to tell Sunshine that she cannot eat the apple, even a slice of it.  That she cannot eat the crackers and cheese that her friend is having.  These are healthy, nutritious things but if they fall outside of our food schedule, they are off-limits.  And if anyone has any tips on how to tell a hungry two year old not to eat a healthy snack, I'm so open to hearing them! 

 
January 2011 ~ her last snack before carb counting begins...forever!

It is incredible that something we took so easily for granted is now the main focus of each day.  Meal planning and preparing requires a tremendous amount of energy.  It will get easier.  And the motivation for making it exactly right is so worth it!  Sunshine is worth it, no question.  Until a cure is found, we continue to count every morsel of food, carb for carb.

 

white gold

We are so lucky to live where we do!  In addition to all the homegrown veggies and fruits, we supplement our diets with local chickens, beef (from across the road), eggs (from beside our place), honey, and even bacon if we are feeling like it.  Most of these places are within walking distance...like a .1 mile diet.  This summer I am crossing my everythings hoping my dear husband will finally build The Coop for some hens of our own.

We also get local dairy products from various friends.  (For some silly legal (?) reason, we are not supposed to buy unpasteurized milk, but I prefer the real thing to commercial milk that has been overheated, killing any beneficial enzymes and nutrients the milk has to offer.  Oh, and fresh sweet milk is absolutely delicious!)

 
My children and I drink litres of goat milk each week, while my husband cannot stand it!  He says it's goaty.  I think pasteurized goat milk is definately goaty, but the real deal is pure liquid goodness.  It helps that our friend's goat farm is immaculate and the goats are so well loved.  We know this to be true because we've been coming here for years.

 
 
 Josh prefers cow milk which we obtain irregularly from another friend's farm.  She calls us when she has a surplus and then we hit the cow milk jackpot and I make lots of yogurt and whey all at once.  I use the whey in lacto-fermenting other foods, like pickles and kraut.  Also, you can soak your oats and other grains overnight in whey to help in pre-digestion.  A great book on many more lacto-fermentation methods is Sally Fallon's Nourishing Traditions...a fascinating read, in my humble opinion.

 
 
Because I have cow dairy sensitivities, I started my children directly onto goat milk...these goat's milk, in fact!  (Incidentally, we have since learned that giving cow dairy to very young children has shown them  to be more predisposed to developing Type 1 Diabetes.)

 
We get a lot of goat milk and when there is enough, we make our own yogurt.  I find that goat yogurt is a bit more finicky, and some batches can have a runnier consistency than others.  Perhaps it's due to the temperature of our cookstove where I place the jars, but I've also read that this is the nature of goat milk.  With granola or on pancakes, though, it doesn't bother us if it's not always creamy thick.  I've also heard that you can thicken goat yogurt with tapioca (a root starch derived from the cassave plant) or with xanthum gum (a natural sugar derived from corn). 

Last week, Rae showed us her clever uses for recycled sweater sleeves.  They are sort of like our milk warmers for incubating yogurt. 

 
After bringing the goat (or cow or sheep) milk to 82C (180F), I quickly remove it from the stove so it will cool down to 44C (110F) and mix in the starter (storebought or a little leftover yogurt).  Then I set the yogurt atop our woodstove, (or beneath, depending on the stove temperature), and let it go to work for about 6 to 8 hours.  Afterwards, I sometimes mix in a little honey or vanilla for flavouring Josh's cow yogurt...he likes it like that.

 
I remember reading that a person can absorb part of the character of the animal that is the food they eat.  This was referring to the type of dairy that one consumes...cow, sheep, or goat.  Perhaps that's why my boy is so full of frolicking good energy...have you ever seen little goat kids leap about after they get their milk?  Ahhhh, it is so adorable!

For our family, I look forward to our visits to the goat farm.  A chance to thank the kids and mamas for the precious milk that sustains my family. 

 
I love knowing where our food comes from, whether it be from a two legged or a four legged friend!

the pink elephant ~ march 2011 ~ road trip

Many people have asked us if we mind being so far from a hospital...almost an hour away.  It's true that we have had to completely rearrange our ideas of healthcare, and embrace what modern, allopathic medecine offers our child.  But our pediatrician has informed us, in her blunt and oh-so-lacking-bedside-manner that we really shouldn't bother considering a move closer to the hospital because if Sunshine needs emergency medical attention, even waiting for an ambulance will be too long.  We have to rely on ourselves.  We have been told this over and over again by doctors, nurses, and most importantly, other parents of children with T1 Diabetes. 

That means we carry a glucogen kit...sort of like an epi pen, but rather than injecting adrenaline to deal with an allergy, we are injecting glucose to deal with a severe low, which is a constant, daily threat.  So our glucogen kit (and a juicebox, syringes, insulin, glucometer, bandaids, and a whole bag filled with other important medical paraphanelia) goes with us everywhere.  Even 5 minutes up the road to grab a few vegetables for dinner...because you never know if you might get rear-ended or if a fire truck blocks the way or if the river floods out the road.  Needless to say, I've been quite terrified of leaving home these past two months.  Truly terrified.  I know it will get easier and become more "normal", but for now I prefer to stay home.

However, this past weekend we had to make our first 4 1/2 hour journey to the big big city to meet Sunshine's endocrinologist who specializes in hormones (insulin is a hormone).  This required 3 days of preparing, packing, planning, and panicking.  Finally we were off with the back seat squished with our three car seats filled with three little people.  The drive there was anything but fun with a crying 8 month old, arguing siblings, a sleep-deprived Papa, and a stressed-out Mama.  Did I mention it was a 4 1/2 hour drive?

But what a difference a few days make!  We had our bi-annual visit with our naturalpath, and met Sunshine's endo whom we really liked.  This wonderful, caring doctor even held my hand while discussing some of the heavier topics regarding Sunshine's condition.  And I was blown away when she asked us to come back for her lunch hour so she could spend more time with us!  It gave me so much newfound faith in the allopathic system just from talking to her.

The return trip was a lot better and little Huckley barely fussed.  However, we still had our gong show of a voyage, which includes frequently pulling over on the side of the highway for blood glucose tests to ensure Sunshine's levels are in the normal range.  We test her between 7 and 10 times a day with a little "poke" on the side of her finger.  While she rarely cries with these pokes, she flinches everytime ~ and so do I!  We also have to take our cooler with us to keep the insulin, and meals, cool.   We cannot eat most of our typical road trip food we have done in the past (which has never been junk food anyways, rather it is usually snacks from the health food store and treats I've baked for the road), so I spent a lot of time in the passenger seat making up meals to eat and balancing carb counting with my knitting...oh, yes, I did get a little of that in, too!   

But we managed to have a few days of fun away from home.

 
A picnic of home-made sandwiches in the blustery March weather.

 
Getting rid of some unwanted items picked up at the rest stop!

 
Sunshine's new jewellery.

 
And one of the reasons why my heart is bursting with love and happiness.

 

This is the first of many road trips we'll make for our little girl's health.  I have to remember that there are five of us on this journey...certainly we were all, in a way, diagnosed with T1 Diabetes on January 6, 2011.  The challenge for me is to make this new life fun and normal.  For a road trip is an exciting thing in and of itself, no matter the destination.