You’re Hurting my child & you NEED to stop!

“What’s on her/your face?”, “Ohhhh, do you have the chicken pox?”, “Am I going to catch something from her?”, “Why isn’t she participating like the normal kids?”, “Well if you     (fill in the blank – ate better, didn’t pick, slept more, were a pink elephant with yellow stripes and pooped rainbows)    it would be better”, “What’s wrong with her?”

These are all things that we’ve heard, that Audrey has heard in the last 6 months, predominantly in the last 6 weeks.  Well, almost all of them…nobody has said she needs to have yellow stripes…. 

The rest of them though, and a lot more, are questions that adults and children alike are asking.  

The worst part, is she’s NOT the only kid out there hearing these questions.  Any child who’s facing a health challenge, one that has visible symptoms or who’s behaviour is a reflection of said condition, has heard some variation of these before.  It’s an abhorable, disgusting lack of respect and I’m bloody, freaking, SICK OF IT!

Let’s start with questions #1…

 “What’s on her/your face?”

What do you think is on her face genius, Skittles?  They’re sores.  They’re uncomfortable, marks that cause her great discomfort and now thanks to you, she’s painfully aware that others see them too.  

 “Ohhh, do you have chicken pox?”

No, do you have idiot pox?  Would she be in public if she were carrying a highly contagious infection?  No her mother, unlike you has a brain.  And a conscience.  And a heart.   Not chicken pox bud, nor are they scabies, mosquito bites or unicorn kisses.   

Not that our 8 year old should have to answer or explain any of that, to you.

 “Am I going to catch something from her?”

Unfortunately not.  Unfortunately, her grace.  Her poise.  Her MANNERS are NOT contagious and you are stuck with your ill-mannered questions, and lack of compassion.

Maybe watch her for a few minutes and try to absorb some of the awesome that is floating out of this girl!  It’s even MORE incredible than a pot of gold, covered in fairy dust, flying on the wings of a Pegasus pony.

 “Why isn’t she participating like the normal kids?”

“Normal kids”?  What the heck is a “normal kid”?  Have you ever met kids?  Where you ever a kid?  

The last time I checked, kids are ALL abnormal.  Look to your left, there’s one picking his nose and using whatever he found in there to draw Garfield faces on the park bench.  Just behind him is one who’s hand is down his pants.  Not sure what he’s fishing for in there, but apparently it’s hard to catch.  To your right?  A little girl blowing a head gasket because her Mom just sat on her “friend”.  The invisible one who was, lounging at that picnic table, of course.

Get it, they’re weird.  They’re quirky.  They are anything but normal.  Heck, most adults have missed the normal boat too.  Take you for example…

 “Well if you     (fill in the blank – ate better, didn’t pick, slept more, were a pink elephant with yellow stripes and pooped rainbows)    it would be better”

Really?  You want to go  there right now?  You want to give condescending, generally Facebook sourced “information” (read: you read some article title, from some un-reputable, tabloid website, didn’t even bother to click it open and now think your Dr. FREAKING Oz?) to a little girl who’s struggling?  As if you’re going to magically fix something that 8 teams of specialized doctors are working on?

What’s worse – blaming the parents of kids with diagnosed diseases, like cancer for making their child develop Leukemia because they let them eat Kraft Dinner, with a hot dog, one time while drinking juice?  

Don’t think it happens?  It does.  Not always to their faces but again, you say it behind their back or share some dumb accusatory social media article trying to “help”.

I’m ALL for clean eating and avoiding chemicals and taking care of our bodies.  But never once, not ever have I thought that a parent has “caused” their child’s illness because of poor food choices.  Unless they are starving their kids, or chain smoking over them at night – this it NOT THEIR FAULT!

 “What’s wrong with her?”

What’s wrong with her?  What’s WRONG with her?  What’s WRONG WITH YOU?

Who asks that question?  I mean, I get it you care.  In general with most of these questions you’re well meaning but are you kidding me.  Are you abso-freakin’-lutely kidding me?

“What’s wrong with her?” implies that she’s damaged goods.   That she’s undesirable.  Broken.

There’s not something “wrong” with any sick or struggling kid.  They’re facing a challenge.

 In general, they’ve face more in their little time on earth than you’ve faced in your entire life.  They’ve been poked and prodded by dozens of doctors.  They’ve given what probably amounts to litres of blood.  They’ve been scanned, examined, & biopsied.  

They’ve endured more than you can imagine and thanks to you, they’re now feeling that pain all over again.

I realize I’ve come at this rather harshly.  I’d apologize but in truth I’m not sorry.  

I have held Audrey many, many nights as she cries tears of pain over questions just like these.  We’re working on building her confidence to answer them with respect but firmness.  She does not have to give out her information, nor does she have to accept them.  She can explain it’s none of your business and should set her boundaries clear.

She’s learning to do that, but right now she’s 8.  She’s too young to have to do that, so I’m going to do it for her.

If you’ve ever asked a child any one of these questions, even if you were well meaning, shame on you!

Would you EVER walk into a bank and ask the teller who has adult acne – “Ewwww what’s on your face?”  Probably not.  Unless you were angling to have your bank account mysteriously miss $500.

What about a biker?  Would you ever ask him, “Am I going to catch something from you?” Not if you value the location of your nose on your face.

How about the elderly lady in the wheelchair – did you ask her, “What’s wrong with you?”  Don’t answer that, we know you wouldn’t.

Do you get what I’m saying?  You would never in a million years ask these questions of an adult because your manners tell you not to.  That or you’re just smart enough to realize there are painful consequences waiting on the other side of them.

Saying them to child however, is completely acceptable.  I mean they are tender little spirits, with feelings but they can handle it, right?  They’re not entitled to your respect because they’re too short to ride the Tilt-A-Whirl?  Their privacy is a non-issue because you want to know?!

Sounds pretty stupid right? 

I thought so.

My friends, if you’ve ever asked these questions please know I don’t hate you for it.  Some of them, have probably even come from a place of good intention, but they’re damaging & hurtful.  They’re rude and you need to know, they need to stop.

If you love our kids enough to ask, then love them enough to respect them.  To tell them they’re beautiful.  To ask about the picture their clutching in their hand, rather than the marks on their cheeks.  To hug them close when a child, too young to know better asks one of those questions – and then correct the child.  

It’s not Ok for you to ask, and it’s NOT ok for your kid to ask either.  They will, because kids are curious.  This is where it’s your job to teach the better than you were taught.  Educate them to empower them.

To those who are not my friends (eg. the people who seriously don’t see any problem in any of the above questions) shame on you.  I want to preserve my witness, to shine Jesus to each of you, but know this, Jesus is saying SHAME on you too!  

So, please, use your head & your heart and stop hurting my child – she’s already hurting enough.

And then we prayed – Audrey Update

Last night, there was a little knock on my shower door.  It was bedtime and I assumed it was one of my munchkins trying to find a reason not to be brushing their teeth.  That’s a normal occurrence around here you know, the avoidance of bedtime.  I’m entirely certain why, as I’m counting down from the moment my alarm goes off at 4:45am to the minute my eyes close.

Anyways, I was done, so I shut the water off, grabbed my towel and opened the door.  There was Audrey, eyes red rimmed with tears, “I tired of it.  I’m really tired of it” she said, looking up at me.  I didn’t have to ask what she was tired of, I knew.  I know, me too. 

So I knelt down, wrapped my still water covered arms around her and let her cry, fighting back my own tears.  And as I did I felt an overwhelming sense of urgency that we needed to pray.  Not just me, not just Corey or my Mom but we needed to ask everyone we knew to pray for and over our Audrey last night. So I kissed her forehead, wiped her tears and sent her to ready for bed.

Then I called Corey in and told him what I’d felt and within minutes we were sending messages, updating social media and doing something I rarely ever do – sharing our struggles & asking for prayer.

Once the girls were ready for sleep, we sat on Audrey’s bed together, laid our hands on our girl and prayed.  Each of us taking the time to thank God for His incredible grace in our lives, for her strength, for Bethany’s love of her sister, for the tests that weren’t bad and for the future she has.  And can I tell you something?  As a parent there is little else that will shake you to your emotional core harder than hearing one of your children pray over her little sister.  Oh, how sweet the hearts of the children God has given us.

We kissed our babies goodnight and then came downstairs to pray, plan and talk some more.  

I hesitate often on sharing our health journey and struggles on social media.  I never want to seem dramatic or attention seeking.  In fact, I desperately need to be the polar opposite to those things and so I do my best to keep the majority of it private.  We all have those friends who overshare, who complain all the time, who us their challenges or the challenges of their kids to collect unnecessary attention, and I don’t want to be that.  

I want, no I NEED to put my trust, our trust in Jesus and not in social media & the attentions of others.  I truly believe it’s so easy to let Google, Facebook, Instagram and everything in between that the cool kids do that I don’t know about because I’m “old” now, become our God.  That attention can feel good in the moment, it gives physical response rather than waiting to see/hear what God will do, it can be satisfying if we let it and I’m determined not to go there.

However, last night I believe I was being called by my God to use those platforms to ask for help.  To share with the people who do truly love us and to ask for prayer.  We need help, we are struggling so much deeper than I’ve shared with nearly anyone, especially last night and we needed to ask for the prayer.  There are times people I love share their struggles and ask for prayer and I’m so thankful they did.  As family in Christ we can’t fulfill our responsibility to love one another and pray for each other if we aren’t given the opportunity.  That was being pressed on my heart last night, and so I listened.

If you saw that message or received our text and prayed – thank you.  From the bottom of my heart and soul thank you for loving our girl, our family and praying.  It means so very much more than you’ll ever know.

Audrey’s body isn’t doing well.  In fact, it hasn’t been doing very well the past few months. Her fatigue has begun taking over again, in a way we haven’t seen in years.  It is making getting through school difficult and some of her favourite activities nearly impossible.  The fevers are trying to sneak back in, thankfully they’ve remained low and none have over taken her little body or landed us in the hospital.

A few years ago she also started to develop “spots” or little lesions on her skin.  We’ve watched them on and off, they’re a type of petechia and we’re seeing Dermatology at BCCH for them, but again nobody has a clue what they are.  In early March they did a biopsy of one of them from her hand in an attempt to figure them out.  We also received the funding for her 4th level of genetic testing.  Those blood tests have been taken and shipped out of country, in search of answers.

Up until recently those lesions were a few at a time, but right now they are exploding all over her little face and arms.  They end up like open sores, and are leaving her face red and scarred.  She “worries” at them too, picking because she wants them to go, but even the ones she can’t reach are open sores and leave scars.  We’re covering her in every cream, both prescribed and natural that we can in a desperate attempt to stop them.

We’ve watched the food she eats, changed soaps and are trying, but nothing is working.

The hardest part though, the part that lead me to that request for prayer yesterday was the joint swelling.  Since December Audrey has had 4 boughts of different joints in her hands and feet swelling.  They cause pain, sometimes lump and immobility.  Sometimes they last a few days, other times, a few weeks.

Right now, we’re in the middle of the worst episode of swelling we’ve seen.  This time it’s attacking the joints in her right (dominant) hand.  She’s unable to properly hold things, including a pencil, cup or jump rope and Audrey is hurting the majority of the time.  This weekend she just carried around an ice pack or a heating pack, switching between the 2 trying to find relief.

It’s hard.  Actually it’s horrible and we have no idea what to do.  Last night after having to try hard to get through her school day and then through the gymnastics class she refused to miss, she couldn’t take any more and the tears fell.

They were justified.  

I’ve been on the phone and placing emails, contacting a few of the “big guns” we see at BCCH trying to line up some help.  We have to find out what’s happening in her body.  I need someone to tell me how to fix this, how to offer her relief, how to make it better.

If you see our Audrey on a daily basis, chances are, other than seeing the sores on her skin you’d never know she’s struggling.  You may notice how pale she gets or how sunken her eyes are, but you’ll generally see a light from her.  She’s got spunk and sass, and sweet and cheeky spirit and a beautiful helper’s heart.

She’s a fighter and I’m so glad that she is, God’s going to do something great with who she’s becoming through all of this, I just know it.

Again, if you prayed for our girl last night or you’re praying now, thank you.  Your thoughts, prayers and compassion are so greatly appreciated and we love you all so very much for them!

Audrey & Bethany NEED your help meeting a need!

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Every year at Christmas, one of the company I work for (my parent’s company) has a “Food for Friends” drive that pivots around our company open house. Suppliers, trades, customers, friends and even, at times strangers make donations to our local food bank and each year blow our minds with their generosity. It’s overwhelming to stand, at the back of my Mom’s Honda Pilot, looking at the mass amounts of food, diapers and supplies given out of the goodness of people’s hearts.

For Bethany & Audrey, it’s one of their favourite parts of the Christmas season. They love having the privilege of helping us deliver the food to the local Salvation Army and eagerly help load food hampers with us for families in need in out community.

When we had kids, Corey and I set out to raise women who have “Jesus’ heart”, who are kind, generous and loving. Little did we know that HE gave us girls with so much more than we could ever teach them. Their love for helping – whether it’s me in the kitchen or kid who’s sad is such a beautiful thing. They were born with the desire to serve and we try, as often as we can to give them avenues in which they can do it.

Recently, a need in our community came to our attention and its direct connection to our lives & our hearts resulted in all of us feeling like we HAD to do something…and so we are! (secret: We’re inviting YOU to help too!)
Most of you know that a year and a half ago Audrey was diagnosed with Celiac Disease. The means that for the safety of her body she can’t eat anything that contains gluten! It will harm her, both in immediate physical symptoms and long term permanent damage to her little body. It was a hard diagnosis to swallow, but one we have grown to appreciate and embrace. It changed her life and it has made us so much more aware of a different kind of need.

Someone with Celiac disease needs to eat “Gluten Free” foods (certified) for their body to function properly and be safe. That means it can’t contain wheat, rye, barley or triticale (among other things), nothing that contains gluten. In general, we have found this to be not so difficult. Fresh fruits, vegetables & meats are all naturally gluten free, as are non-gluten grains (rice, millet, sorghum) etc. Where you run into the cost, and potential problem in this diet is when it comes to bread, dairy products, pasta, cured meats, crackers and canned goods. Many things, MANY of them that you would think are gluten free – like a can of mushroom soup, are not. They are filled with gluten – and there for seriously dangerous to a Celiac.

The items that are gluten free are significantly more expensive than their wheat counterparts and this diagnosis can take a real toll on your grocery bill. For those living on meager means, or needing assistance, this can feel or even be nearly impossible.

See where I’m going with this?

Last week we learned that our local food bank and food banks around Canada have very little in regards to gluten free foods. In fact, the lady I spoke to said there are times they have almost no gluten free foods to offer to a family in need who are facing Celiac disease, or wheat allergy. She said there are times they come and look through the canned foods available and can’t find almost anything safe for them. Unfortunately, the majority of what gets donated to a food bank, the things they are able to keep in stock for families in need are things that are packaged & canned. These are the very things that people like our Audrey can’t have.

When we learned this our hearts broke and the girls were filled with questions – “How did we not know this was happening?”, “WHY is it happening?” and more importantly “How can we fix it?”

The answers are simple – we didn’t know it was happening because we didn’t think to ask. The reason it’s happening is because NOBODY else knows there’s a need either, and what we can do about it why I’m writing this blog post!

Audrey & bethany's

From August 15 – 18 2016 Audrey and Bethany are holding their first ever GLUTEN FREE FOOD DRIVE! And as an added bonus they’re raffling off 2 Chilliwack Chiefs Kids Jerseys (you earn an entry when you donate)
We will be collecting Gluten Free donations for our local food bank, doing our best to not only fill their shelves with foods safe for everyone but also to create awareness in our community, and communities around Canada about a need that needs meeting! This is a problem we CAN fix – if you’re willing to help us.
Here’s how you can help:

  1. If you live in the Chilliwack/Fraser Valley area purchase some gluten free food and contact me. We will have a collection location for you to drop off your food
  2. Tell your friends about Audrey & Bethany’s Gluten Free Food Drive and invite them to participate
  3. If you live ANYWHERE else in Canada purchase a few gluten free items & donate them to your local food bank.
  4. Consider running your own Gluten Free Food drive and help your local food banks
  5. Share this blog post/Facebook event and help spread awareness to a growing need
  6. Leave a comment and share with us how YOU would like to help

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Helping someone else isn’t a chore friends, it’s a choice. Today we care daring you to make a choice to acknowledge a need and do what you can to meet it!

Your Children Are Only Young Once: Your Dishes Can’t Wait & Your Clothes Are Starting To Smell

Dishes can't wait

“The dishes will wait, your children are only young once”, “Leave the housework until later & play with your kids, they grow up so fast”, “There will always be work, your kids won’t always be at home”.

Whether you’re having tea with a mother who’s children are all grown, or scrolling through Facebook – these platitudes are everywhere.  They’re based in good intentions, said by those who miss the “yesteryear” and shared by those who’s children are asleep after a day of terrorizing their home (you know, when they look so sweet & peaceful that you feel like your heart is going to explode with love.  It’s the opposite feeling to when your brain is going to explode from hearing “But MOOOOOM, SHE….” and “You are the WORST mother EVVVVER!”).

Regardless of who shares it, I believe they all have the best of intentions – to encourage parents in busy, fast paced world to prioritize their children.  In an effort to make them feel special, loved & important & to avoid regrets later in life. 

I get it, we DO need to pour into our kids.  We need to put down the devices, close the laptops & look into their eyes when they’re speaking.  We need to soak up the snuggles, read stories, have “yes kids” days (we plan those days where they throw out suggestions and I do my best to say yes to all of them) and be present with them.  

There are times it’s OK to do a puzzle instead of the dishes & dress Barbies rather than fold yesterday’s laundry.  We all want to LOVE them and doing those things sometimes will absolutely make them feel just that, valued & loved.

Which is great, but we also have a job to do.  Those platitudes & the behaviour they promote are threatening the successful product of that task.  

Our #1 job as parents is to raise upstanding, responsible, compassionate, confident people, who not only have the wings but the skills to take flight when the adult years come.  No matter how much we love them, no matter how much we’ll miss them, they won’t stay at home forever and when the time comes for them to leave – WE need to be confident that they’re prepared to succeed.

And that, my friends is where I call BS on the whole “it will wait” movement.

Now, more than ever we are living in a destructive, self centered, selfish world.  The statistics coming in show that children & the young adults coming up through the ranks are the most narcissistic, entitled generations we’ve ever seen – and that scares me.

These brilliant young people lack social skills, struggle to maintain a job because they don’t have good work ethic, & they seem sad, missing the self worth that comes from a job well done. They also feel very strongly that the world owes them something.  

Um, HELLOOOOO – NOBODY OWES YOU ANYTHING.  If you want it, WORK for it!

I can’t help but think that our desperate need to full fill our kids, paired with the fact that we’re so bloody worried about not hurting their feeling is one of the major contributing factors to why we’re looking at such a social mess. 

Maybe if our kids had to wait a little more, maybe if they had to self entertain (without the aid of technology), maybe if they had to pitch in a help & even have to re-do a job 3 times over until it’s done right – they wouldn’t grow up feeling like victims.  Maybe they’d grow up feeling like warriors, capable of doing anything, being anything & achieving it all through hard work.

Dishes done

As the mother of a 9 and 7 year old, I certainly can’t claim to be an expert on parenting, then again I don’t really think anyone can.  I am however, the product of parents who invested in us while still managing to do the laundry & provide home cooked meals served on clean dishes.  I’m walking proof that this theory doesn’t damage the heart of your children, I always did & still do feel overwhelmingly loved & important to my parents.

I’m not saying you shouldn’t EVER put aside your chores and focus on your kids.  I’m just saying you shouldn’t ALWAYS make your kids the most important thing in the room.

I believe whole heartedly, that it’s OK to make them wait until you’ve finished a conversation to speak to you.  Just like it’s OK to do the dishes and ask them to help, do laundry instead of playing Lego and pass out consequences when there is attitude dripping off their words (even in public).

I Want my Children to Know I Believe in Them!

Desperately I want our children to know I believe in them.  By giving them jobs, I’m teaching them I believe they can do it.   By making them wait, I’m showing them I believe they have good manners.  By doing the dishes instead of playing with them, I show them I believe they are capable of creating their own fun.

No matter how much time we give to our kids, I think those regrets will still come.  Not because we didn’t do enough, but because we will miss them.  Sadly, no matter how many hours we do or do not invest, nothing will stop that growing up from happening.  It’s the inevitable part of life, like grey hair & acne (at the same FREAKIN’ time over here?!!).  

I don’t know about you but if I can’t slow down the growing up process, I’d rather spend my years building into our girls in a well rounded way.  I’m going to guess, since you’re here and you’ve made it this far, that you feel the same way too.

So, I want to encourage you today!  Go ahead, wash those clothes so you don’t stink and grab your kids to help put away those dishes.  

Then when the jobs are all done, gather them up, curl up on the couch (with leftover Easter chocolate) and “fill their buckets”.  You can tell them what a great job they did, how proud you are of them and you’ll all feel accomplished loved.

Audrey Update: In His Hands

Sooke - In his hands 2-1

The last 8 days have been an intense whirlwind of doctors, tests and tension for our family, our Audrey.  It’s been just SO much, so much everything.

Since October when Audrey landed in hospital with that super intense fever again, things have been on a downward turn for her.  She’s been struggling with serious fatigue, to the point of being difficult to wake some days, and leaving her in tears many afternoons out of shear exhaustion.  

There are days she doesn’t want to participate in activities she loves, other days when we’ve gone for a short walk or she’s played outside and she’s too tired to even get up off the floor.  Then you get the days when she’s rebounding off the walls, a crazy kid and you’d never know there was something going on.  

Lately we’ve had many more days of tired than we do of energy.

She’s also been battling intermittent fevers.  They come without warning, are more mild that the hospital stay ones and then disappear a few days later.  There are no other symptoms other than a headache & that fatigue.  They don’t respond to medicine and we’re generally forced to just ride their wave.

Finally, and most concerning her blood work has continued to come back abnormal.  Her hemoglobin is still low & slowly getting lower.  Not to the super scary we need to transfuse place it once was, but not good either. 

She also had another test come back low, not super low but enough that it sent spinning into motion the events of the last week.

Audrey’s symptoms and previous tests have had our pediatrician consulting with another, specialized pediatrician in Abbotsford for a while now.  After last week’s appointment with Dr.H, she decided it would be wise to refer us over to him for an endocrine perspective.  The referral went on a Thursday afternoon and by Monday, we had a Wednesday appointment to see him.  (Now if you know pediatricians & specialized ones at that you know that appointments coming that quickly simply doesn’t happen.  You generally have to wait…a long time)

Wednesday’s visit had him talking to us for a few minutes, he spent 2 minutes examining Audrey, read the labs again and started phoning the Abbotsford hospital calling in favors to have some very special tests done on Audrey the next day.  He was concerned and didn’t want to wait.

We left his office, my head spinning & Audrey on edge.  She’s come to the place in life where she not only understands that something isn’t right with her body, but where she hears and partially understands the doctor speak.  That can be intimidating for any adult let alone a child.

Thursday came, and we arrived on the very familiar Pediatric unit at ARH.  We walked into the Day Unit and I felt relief wash over me.   Standing there waiting for us was Nurse J.  The nurse who registered Audrey on our first stay in Abbotsford when she was 10 months old (nearly 7 years ago) and who’s taken care of my girl on each of our other 5 stays there.  She recognized us and AJ recognized her – both those things made me breath deeper.

Tests

They settled us in, did a bunch of pre-test checking, wrapped her in warm blankets and then started an IV.  It went smoothly and I was so glad.  After the horrific experience AJ had with her last IV here at CGH in October that resulted in both arms being bruised and her hand being so swollen she couldn’t close her fingers because it was so badly botched, we were thankful.

They gave her meds, they took many, many viles of blood, we watched movies and it was over.  She picked a prize (a stuffed Red Panda to be exact.  They are a thing and apparently I’m the ONLY adult in the world who’d never heard of them), we spent 25 minutes in the gift shop and we were off.

The test was over, but the fear wasn’t.  The diseases they were looking for weren’t life threatening but they were life altering.  They were also re-checking her hemoglobin and I was as apprehensive of that as I was the other stuff.

This afternoon, I received a phone call from the other doctor.  The endocrine based tests all came back 100% normal.  Hallelujah! 

Unfortunately her hemoglobin is still low.  He’s made more suggestions of specialists we need to see, he believes we need to keep pursuing what’s happening but is returning us to the care of our Dr. H.

We have referrals to 2 other new departments at Children’s hospital that we’re waiting on appointments for.  We have one set appointment at the end of March and after this week’s test results they may be adding one more clinic/department to the referral list.  

We don’t have any answers, we don’t have any solutions and we do have a kid who’s still really physically struggling.  

We ALSO have another thing checked off.  Another large group of diseases we don’t have to face.  And some amazing people who love and care for us.

Tonight I’m happy.  I’m frustrated.  I’m relieved.  I’m worried.  I’m thankful.  I’m tired.  And I’m determined.

I’m determined we’re going to get to the bottom of this.  I’m determined to keep fighting for Audrey, to keep asking questions, searching for answers & doing my damnedest to make life normal for both of my girls.

 I’m determined to see today these past few days as a blessing, a deep & beautiful blessing.  From familiar nurse faces, to fast acting physicians, our girl & our family have been placed into great hands.  

We’ve been placed directly into the strong, warm, loving hands of our heavenly Father & that my friends, is a blessing.

Thankful for Celiac Disease

Audrey 2015

February 10 2015 is a day I will never forget.  That phone call a permanent recording in my memory bank.  I cried harder that day than I have cried in my life.  My body physically hurt from the sobs, my stomach turned with nausea and my mind spun with all of the “couldn’t eat, couldn’t do, never will again”‘s.  It was the day that Audrey was diagnosed with Celiac disease.

It was a pivotal day for not only Audrey & our family but for me and my faith.

For the first time in my life I felt like God had let me down.  I knew that He had answered my prayers, and I knew that He cared, but in the days that followed, I struggled to understand.  I couldn’t understand how He could have answered my desperate prayers with Celiac disease.  Selfishly, how had He let Celiac disease happen to me, as a mother.

I wish I could go back and wrap my arms around that me.  I’d tell that broken mama what I’ve learned about Celiac disease, about Audrey and about God’s true faithfulness.

Believe it or not, the diagnosis of Celiac disease was not the worst thing to happen to our Audrey girl or our family.  Oh, I still have moments where it leaves me frustrated, where I wish it were gone (don’t get me wrong, if I could make ALL of her health struggles disappear I would..but no matter how hard I try, I can’t), where I want to rip my hair out because people are ignorant and don’t understand.   I also have many more moments of something else… 

Perspective and clarity.   They have shown me that inside a diagnosis of Celiac disease are many hidden blessings:

  • Above all else, I’ve learned how strong our Audrey is.  She has handled this diagnosis with grace, courage and determination, owning this part of her life.  She asks questions, makes good choices (she could sneak things if she wanted to, but she doesn’t) and won’t eat anything unless I’ve OK’d it first.  The strong willed nature that God gave her might be making my hair go grey but it’s also the thing that will allow her to flourish in life.
  • We no longer find Audrey curled up on the floor in pain, or hear daily complaints of tummy aches. 
  • Removing gluten from her diet has given us yet another door to teaching our children about label reading, processed food and making healthy choices (with or without gluten).  Conversations that will benefit them greatly as they become adults.
  • The massive, over the top, exhausting mood swings vanished in a matter of a week.  From mid August 2014 (when they guesstimate her Celiac “kicked in”) Audrey had the most bizarre, physically exhausting, emotionally trying mood swings we’ve ever seen.  They left us afraid that we’d never survive raising her, that she’d never survive being raised by us!  Changing her diet was like getting a new, firey, sweet, stubborn little creature and believe it or not ALL of those traits were a welcome exchange for who she’d been.
  • We are SO lucky that Audrey was diagnosed with Celiac disease in 2015, when gluten free is “trendy”.  Many restaurants are learning quickly how to prepare celiac safe meals and stores carry gluten free options for almost anything.
  • Cooking & baking gluten free is NOT the bland, horrible, daunting task everyone made me think it would be.  I’ve been able to replicate most of our favourite baked treats and let’s be honest – when you’re eating clean & healthy (which we do 85% of the time) you don’t have to worry a lot about gluten.  Fruits, veggies, real meat, rice, quinoa etc are all naturally gluten free.

We are in a rough spot with Audrey again.  She’s been facing other (non-tummy) health issues again and at times has really been physically struggling.  We have test results once again coming back not good and are in a position very similar to the one we were in last year at this time.  We are waiting on more results to come back, have referrals to 3 new departments at Children’s hospital and are currently awaiting those appointment dates.  The fevers have returned and I touch her often with trepidation, that my touch will be met with heat.

It’s easy to let the fear creep back in, and while I really have my moments of panic this time is different.  This time I have the perspective of a diagnosis I thought would destroy our world and instead it’s given Audrey a piece of her life back.

God answers our prayers always.  Sometimes those answers are the ones we want, sometimes they’re the ones we dread and other times the answer is simply to just wait. I’ve spent the last 6 years thinking we were in the “wait” zone, but that’s not true.

Our prayers have been continually answered, in the number of diseases that have been ruled out, the number of times they looked for cancer and found none, in the fact that she’s going to be 7 years old – in a diagnosis of Celiac disease.  

BEST

Remembering that gives me confidence that He will continue to do as He promises in Jeremiah 29:11-13, it gives me the strength to face each day with joy and it gives me the courage to say, I am thankful for Celiac disease and all of the blessings it brings.

The Sum of My Fears

Fear +

On a daily basis I battle with fear.  Fear that something will happen to my family.  Fear that I will hurt someone’s feelings.  Fear that I will say wrong, do wrong, be wrong.  Fear that I will take my last breath and the people who matter the most won’t know that they mattered the most.

It’s a battle I’ve fought for as long as I can remember.  As a child I was afraid that something would happen to my parents.  Or that I’d be less than the “perfect” I thought everyone expected me to be (in reality that expectation was & often is mine, not anyone else’s) and in turn become a failure.  

No matter what the present fear may be, it all boils back to one root fear – that what is my normal, my routine, my safe will be shaken and I will be forced to face change.

As an adult, with perspective I can look at those past fears and even my present ones and recognize where they come from.  Every last one of them, even my root fear hinge on the fact that I like to have control and any or all of those things happening would mean I lose control.  And if you know me, even a little then you know that I hate to lose control.

The last few days have seen my fear levels rising.  Things are happening in our lives right now (which aren’t things I can share here, at least not right now) that are causing my tummy to turn, my brain to spin and my nights to be filled with fitful, interrupted sleep.

My thoughts are going 100 miles a minute running through the “what ifs” of how I’ll handle what may be to come, trying to get a grip on what could potentially capsize my boat of “normal & routine”.  It’s my way of trying to cope with my fear but let’s be honest…

it doesn’t work.

“What if” never works.  I know that. I can even rationally tell my children that but when it comes time to applying it to my own life, I get sucked in to its vortex just like the next gal.

In truth, 90% of what we worry about never even happens & even when it does we rarely, if ever draw on our “what if” scenarios.  Instead we dig our heels into the moment and focus on adjusting, adapting and coping with what is in front of us.

So, then why do allow the “what ifs” & fear in?

I don’t really know but I think it has something to do with where I let my eyes focus.

When I choose to focus on the hard things, the scary things, the flat out bad things that may lay ahead I miss all the good things, the beautiful things, the incredible blessings that God has placed right here, in my present.

It’s much the same as embarking on a long hike for the first time, alone.  Looking up at the top of the mountain alone from the parking lot, the end result feels daunting & even unattainable.  The reasons why it’s “too hard” flood out the reasons that brought us there in the first place and we may be tempted to get back in the car and leave. 

If we take a friend (or 6) with us though, the experience is completely different.  Instead of focusing our eyes on the top of the mountain, we’re laughing in the moment.  Stories of kids crazy antics, trips to the dentist (we’re cool that way), husband blunders and life fill the air, and motivate your steps.  Pretty soon you’re halfway up the trail and right about that time you feel like you can’t take another step, someone turns back and grabs your hand.  

Sometimes it’s figuratively, in the form of words of encouragement, other times physically helping you over that last hump.  Either way you’re not alone and before you know it, you’re at the top – feeling satisfied, accomplished and victorious.

That’s something like how life works too.  When I choose to try to work through all these fears and stresses alone, I feel like I’m drowning.  My chest actually hurts and I struggle to breath – fear takes over and then, it wins.

Then I realize I’m not on this journey alone.  The God of the universe, the one who put the stars in the sky & the planets into motion is right here, walking beside me.  When I choose to talk to Him, to focus on His continued faithfulness and to listen for His quiet whispers, my fear doesn’t seem so big.

I wish I could say I’ve mastered trusting God in all things.  I have not.  I still struggle every single moment daily with my need for control but I’m trying.

Going into this holiday season I’m going to change my focus.  I’m going to do my best to relish in what Christmas is REALLY all about – the birth of a baby who’d one day die to save my faulted & dirtied soul.  I’m going to try hard to not only sing about the peace that His birth brought but rest in it as well.

Because I know, no matter what our future holds, God truly is greater than the sum of all my fears.

 

Finding Grace in Small Things: The Thanksgiving Edition

I can’t let Thanksgiving weekend go by without stopping to take the time to find God’s beautiful Graces in our lives.  This year in particular, after a week and half of exhausting illness, I am completely overwhelmed by the grace we were extended even in the grossest of hours…

5. Kids who were SO brave, when they were SO sick:

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(Bonus: Her snaggle tooth came out too!)

Like I said the other day, this stomach flu was horrible.  It hit our kids (and eventually hit both Corey and I) so hard, they threw up more violently than I’ve ever seen them do before and they were so unbelievably brave.  They didn’t whine or complain, they apologized for “being a pain” (which they weren’t and made me almost cry…) and they were so sweet while feeling so bad.

Then when I was sick they were so quiet, so helpful and completely compassionate.  God’s given us good kids, really, really good kids!

4. A Mom who STILL steps in to take care of her family:

Grammy's Girls 2013

(An old photo but let’s be honest, nobody was taking family puke photos this week)

She doesn’t have to.  I’m a grown woman with children of her own, my Mom by all rights could just write us off.  She could tell us she loves us and send us on our way to figure things out but she doesn’t.  Instead, when this stomach flu hit she stepped up to help.  From driving kids to school, to delivering Perrier water & orange juice at 7pm to help soothe my tummy, she was there to help us through it all.

Over the past 8 years I’ve lamented many times how blessed we are to live close to my parents and we are but this last week I realized something else.  It’s not living close to them that is our blessing – it’s who they are that is our blessing.  God has given us, given me a continual piece of his grace in the heart, hands and hugs of my Mom.

3. Cross Country races:

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Bethany ran in her first cross country race just over a week ago (pre-puking).  The day was beautiful, she was confident and I was overwhelmingly proud. As I watched my girl cross the finish line I was actually blown away to find my eyes filling with tears.

The look of accomplishment on her face, the joy in seeing her not only complete the race but give it her all hit my heart deep.  I never would have had the confidence nor the willingness to do anything like that as a kid.  Now, as a health & fitness enthusiast my heart exploded in pleasure seeing my girl excel at something physical!

2. A local butcher who carries organic Chicken:

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I realize to most people this probably seems silly but to me it’s completely serious.  Over the last few years my corn allergy has escalated to the point where consuming beef & chicken that have eaten corn, cause me a great deal of pain.

The Town Butcher, is a local meat shop here that carries meat from local farmers.  They have grass fed beef that doesn’t eat corn & organic chicken, that again wasn’t fed corn.  Being able to make not only my own homemade stock, but homemade chicken soup that I could eat too is a huge blessing.  Nutritious, delicious and safe – a huge and incredible slice of grace.

1. Reading & Growing:

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Last night, as the rain and wind pounded our house, Corey, Bethany and I sat in our living room listening to a story.  Audrey has progressed far enough in her reading abilities that she can now read us a story!  Bethany sat next to her on the couch and gently coached her the the “tough” words and I again felt my heart swell with pride.  They are such great kids, and despite the way they fight, these moments let us see that they really do love each other.

Grace in Small Things is a social network created by Schmutzie to wage a war against imbitterment!  Check out my first post here.

Please pass the disinfectant

Sick Bethy

Fact: Schools are buildings filled with young, impressionable minds, great ideas and the most DISGUSTING GERMS EVER.

I don’t know if it’s because they lick each other when we’re not looking (I wish this were a joke…) or if it’s because covering your mouth & using a tissue (not your sleeve) is so 1999 or if it’s because the building is old and its heating vents double as bacteria guns but it’s something.  And whatever that something is, it needs to change/disappear/die so these kids can be healthy & these mamas can get sleep!

Our girls have been back in school just over a month and they have been hit with the worst flu I have ever seen.  It started with Audrey, who’s stomach and lower body were covered in itchy spots (not chicken pox) that turned into blisters that look like they may scar (though she didn’t scratch).  Then a day later at 5:30am I woke up to the poor little bug puking.

She threw up so much and so hard that she blew a blood vessel in her eye and smashed her little face off the toilet.  She spent 4 days so sick battling the tummy bug while her body worked hard to suppress an underlying fever.  

Monday she finally seemed somewhat on the mend and despite the fact that the fatigue is still pretty intense (and not helping with some of the other issues we’re working through) I thought maybe this family was winning.

Then midnight came and I woke up to Bethany – puking.  She proceeded to lose the contents of her stomach every 15 – 20 minutes for the next 8 hours.  The process has slowed down some now but she is still so sick.  My heart breaks for her, how rotten she feels and because she’s being so sweetly brave.

Sick sucks.  Whether your kid has the stomach flu, a cold or a broken bone – an unwell child hurts my heart deeply.  

It also leaves me terrified the germs are going to spread and I have been Lysol wiping any and every surface I possible can.  I’ve washed my hands until they’ve cracked and bled and at times I’ve seriously considered even Lysoling the children….except I don’t.

I know it’s not just us, kids are dropping like flies at the school right now, courtesy of this bug & a wicked cold going around.  I know it’s just the nature of school, but I don’t have to like it.

In fact, I hate it!  I feed our family healthy, clean (often) organic foods.  We exercise together and apart.  We have good bedtimes & keep our home clean.  There are vitamins and probiotics, all the “right” things, we even had homemade chicken soup where even the broth was homemade and STILL we get sick.  

Really, what it boils down to is life.  You can do your best, with your diet, with your lifestyle, with your habits and while it all helps, there is no sure guarantee for good health, happiness or parenting.  We have only one choice – do our best, be as diligent as we can and then roll with the punches (and the pukies).

That or maybe we could just start Lysoling all our children in the morning…

What is YOUR best remedy for a tummy bug?  How do you help your kiddos feel better?

The Happy Sad

Sisters

School has been back in session for a week and we are beginning to settle into our new/old routine.  They’re in Grade 1 and Grade 3, and I’m still kind of confused as to how we got here so fast!

I’ve also realized that I’ve learned a few things about life, and the “Back to School Season” over the past 4 years…

1. Last minute Back to School shopping is crazier than Walmart on Christmas Eve.  Those parents are hard-core!  For reals!  They’re like beat you with a binder, ram you with a shopping cart crazy.  Their children can be seen trying to hid in a stack of backpacks while their throwing it down over the last glue stick and whine over prices. It’s good times my friends, good times.

Take my advice shop way in advance, when the sales are hot and the shelves are well stocked.  This will give you time to find everything on your school supply list and will save you a trip to the ER.

Cr AY Z

2. Children’s behaviour leading up to “back to school” gets emotional.  Ok, it gets even MORE emotional than normal.  The combination of being completely sick of each other, mixed with the anxiety/apprehension about a new teacher & a new class makes for some seriously moody children.  

I’m learning (and often failing) not to take those moods too seriously.  I’m also learning it’s not appropriate to giggle when they swing from laughing to crying, to raging to laughing and finishing with a sobbing fit all in the span of a TV commercial break.  It doesn’t help…trust me.

3. Labeling school supplies is fun, tedious but fun.  Also, it’s a Mama’s job, DON’T LET THE KIDS HELP THEY’LL MESS IT UP! (Aaaand you’ll end up with a wicked cramp in your writing hand if you don’t order/print some labels.  Which I did, and it helped)

Ya, I’m a geek.  I can’t help it I was born that way.  Pretty labels, tidily printed names, new pencils and crayons all lined up ready to go make me happy.  It took 2 hours but I was happy to go through it all.  Each time my girls pick up a pencil or open their binder they’ll see their name, in my printing and hopefully they’ll know it was put there with love.

4. This season leaves me feeling “The Happy Sad”.

As our girls head back to school my emotions go a little crazy too.  It’s like having your period and watching a Friends, and then there’s a sad commercial and you just can’t cope! (PIVOT!)(If you didn’t get the reference we can’t be friends, don’t read this)(or go HERE, then we can be friends again).  

Our kids are ready for a change of pace, they’re sick of me and at times (like when they’re fighting over a stuffie like sumo wrestlers over a hoagie) I’m kinda sick of them.  They need other kids, adults & activities to fill their days and so do I.  The time apart gives us all something new to talk about at dinner & knowing it’s coming leaves me happy.

On the other hand, I love these little creatures.  They’re over all really great kids, kind compassionate and smart little girls who fill my bucket on SO many levels.  The time is zipping by fast & I do my best to cherish most our days together.  Seeing them go off to school, knowing how fast it flies by leaves me sad.  

In the midst of all those feels I try my best to give my girls a gift my Mom gave to me.

Never once did my Mom make me feel unwanted.   Instead I felt loved, important (punished, indignant and like a slave at times…because I had to unload the dishwasher – the injustice!) and valued because of the words she chose to say, and the things she chose not to.

She never told us she was happy we were gone, or that she couldn’t wait for us to go back to school, and I try to do the same. 

Instead I tell them I’m excited for their new year, that I know they’re going to love their teacher/class & I can’t wait to hear about each day but I will miss them.  And when they go back I sincerely do.

Of all the lessons I’ve learned over the past 4 years, the one that stands out the most is that time with our kids is precious.  When we look back on the days, months, years that have pasts the hard times will easily be eclipsed by the good memories and time is moving at warp speed.  

Angel Kisses

Back to school always leaves me feeling the “Happy Sad” but each night as I watch my girls sleep, that too slips away.  Instead I’m left feeling incredibly, overwhelmingly blessed by the little girls I get to call mine.