Sunday, May 30, 2021

Fifteen things I want you to know about food allergy and celiac life


Food allergy awareness month and celiac awareness month, both in May, are now coming to a close. As many of you know, not only did our entire family move to a gluten free diet, but I also made a big mistake last week that led to a serious anaphylactic reaction. It’s been a very overwhelming four weeks and while I had hoped to share great educational articles and stories this month, I shifted into survival mode and never got it done. It happens, I know. I am trying to provide myself grace and patience as I continue to lead our family’s special diet life.

Many friends and family members alike have said they feel helpless and don’t know how to support our family. It got me to thinking, what would I really love for you to know about food allergy and celiac life? 

It didn't take long to come up with a list:

1.   Never question a child when he or she says they cannot eat something: Ethan, and now his siblings, are superheroes in training, learning how to stay safe and healthy. If they say no, it’s a wonderful moment of self-protection. Instead of questioning them or giving them a guilt trip, consider telling them how proud they should be of themselves.

2.     Teach your kids that inclusivity of allergy or any special diet is just as important as that of other disabilities: While not every country formally lists celiac and allergy as a registered disability, they can be both life threatening and debilitating at times. The best way to support my kids is to teach yours all about their conditions.

3.     When you see someone reading a label, don't get mad. They are doing it for a reason: I’ve heard people I love complain about ‘that person’ at the grocery store, standing in the aisle taking forever to look at products and read boxes, touching many items at a time. Trust me when I say, this is me. And this is how food allergy and celiac parents keep their kids safe. We aren’t trying to get in the way or be annoying, just literally trying to keep our kids safe.

4.     When a parent or caregiver requests more information about a party or gathering - be that food, art supplies, etc - know that they understand the burden this creates:  It’s honestly horrible to have to ask all the time. I know it may be A LOT for some people. But I appreciate you taking the time to do so, and I am full prepared to provide substitutions so my child can participate fully in all activities.

5.     Take the allergy aware training course! It could save a life: It’s free and it’s available for absolutely everyone to take – www.allergyaware.ca

6.      If you work in a restaurant or own a small food shop, listen to your guests when they ask questions, and be honest in your responses: People who ask these questions aren't trying to make your life hard. They just want to enjoy a meal safely. And they are probably more stressed about the meal than you are, so you already have something in common.

7.     Substitutions mean the world to food allergy and celiac families: When the school allowed me to provide my son a freezie on ice cream day at school, my son was happy, but embarrassed that he stood out and was ‘different’ than his friends. When my daughter saw a ‘free from top 8 allergens’ product in the school snack bin, available to ALL children, she felt normal and safe and included. Anytime you can include a safe substitution and offer it to the entire group, you’ve provided an inclusive environment for all.

8.     When people ask to read the labels even though you feel it's safe, please let them: Don’t take it personally when a food allergy or celiac family asks to peek. It's hard to trust others, most parents don’t even trust themselves. Sometimes people miss things, and allergens can be disclosed under many names. Have the labels ready and you’ll relieve so much stress.

9.     Consider asking a food allergy or celiac family, ‘what can I do to make you feel safe in our home/at our event?’: This will make them cry. I guarantee it. People who do this are angels in our books and make us feel included and safe.

10. An episode of anaphylaxis is a trauma: Please be patient as a family recovers from the very scary experience of sudden, severe illness. We might not want to talk about it, or overshare. We might be afraid to leave home, not want to try new things, or just seem quiet. It takes time to decompress, please don’t take it personally.

11.  Don't take offense if a food allergy or celiac child doesn't wish to touch the same thing as you: In my experience, my food allergy child is often worried about what you touched before that moment. He is on alert, 24/7. Right or wrong, he’s just trying to stay safe.

12.  Food allergy and celiac families may not wish to eat out: It is really hard, every time. While we don’t want to hurt your feelings, please know we may decline your offer because it’s too overwhelming.

13.  Normalize washing hands before AND after your child eats: This is such an easy way to help keep others safe! What seems like crumbs or greasy fingers to you, scares the pants off food allergy and celiac families. Hand washing goes a very long way in keeping others safe.

14.   Please don't bring snacks to public playgrounds and play centres: How long are you really there? Do you really need more than water for thirst? If so, please have them sit and eat, then wash up before play. Goldfish, trail mix, cookies and yogurt drinks can honestly make a child so, so sick, and if there is nowhere to properly wash hands with soap and water, you may leave residue and crumbs that lead to an ambulance ride for another family.

15.   Finally, sanitizer is not enough to remove allergens from your child’s hands: It’s good, especially during this crazy COVID time, but soap and water (and a long scrub) is the only guaranteed way to remove allergens from hands and face.

If you’ve stuck through this post, I am grateful <3 <3 <3 

I hope you’ve learned something new, and maybe one of these suggestions is something you are willing to implement moving forward. Food allergy and celiac life can be overwhelming for parents, but thanks to our amazing support network we know we can be safe and healthy.

Biggest hugs.

xo

Tuesday, April 20, 2021

The good still lives here

The good still lives here

Even when the news isn't what we hoped.
When there's more appointments ahead.

Good still lives here.

Even when our bodies are weary, worn and aching for rest.

Good still lives here.

Even when it's hard.
When tears of frustration become a normal part of every day.

Good still lives here.

Even when we are low.
Defeated and frustrated and depleted.

Good still lives here.

Even when the only constant is change.
And nothing surprises us anymore.

Good still lives here.

It's the 'feel better' notes.
The long, steady hugs.
The dance parties we are 'forced' to take part in.
The puppy cuddles.
The sweet messages from friends.
The distanced help from ‘ride or die’ family.

Proof that the good still lives here.

It’s looking in the eyes of your partner and knowing that,
while we ask aloud,
what else could possibly go wrong,
we are grateful because we know it could be worse.

Now is the simultaneous existence of
present moment awareness,
complete exhaustion and anxious thought.

It’s life.

And the good still lives here.



Friday, March 5, 2021

Twelve months of twister

I've had a hard time finding the right words to share, over the last 12 months. What normally flows so naturally from my inner monologue has been somewhat silenced. I can't put my finger on why.

I feel like I’ve been playing an endless game of twister.

I spent the first few months of the pandemic feeling motivated and empowered to sustain positivity in my thoughts and words.

I was scared.
I mean, who wasn't?
It was all so new and outrageous. An actual pandemic? A lockdown? What?

But it was happening whether we liked it or not.

By the summer I was fatigued, but re-energized by the sunshine, slower days and time spent in nature. I read more, laughed more and even though I struggled to make decisions I was relatively calm and confident. The game was getting old, but I was still playing it and encouraging my kids to find fun as the spinner kept spinning away, beyond our control.

Fall came.

I felt 75% normal. I was worried about back to school and term but I felt like we could handle it. It was a relief to see the kids act like kids, again. I had the energy to greet them with a smile and hug away the worst parts of their day.

The continual pivots at work were slowing. Difficult, but manageable.
Twisting and turning, tired but focused.

Then holidays approached.

I meticulously planned ahead. Worried more than I should have about everyone else's feelings and complaints. Felt a new level of exhaustion and began dragging my butt out of bed. Noticed I needed the kids' hugs more than they needed mine.

It wasn’t the same, but we made the absolute most of it.

We celebrated.
Toasted.
Made new memories and found joy.
Rested. Relaxed. Read.

The moment the calendar flipped to 2021, I felt a renewed sense of optimism. I was hopeful for a better year. I felt more positive and ready to face whatever was coming next. I set goals!

That lasted a whopping two weeks.

The second lockdown drained my last reserves, and those of my kids. The game’s been going on too long. Too many twists, too many turns, too many things out of our control.

We are weary. Deflated.
Sensitive.
Hypersensitive actually.

Each family member requests hugs, but are often too tired to give them.
We make ‘big’ plans, then struggle to accomplish them.
We cry a lot. All of us.

The game is not fun anymore.

I am burnt out.
Playing twister for a year.
Every move more exhausting than the last.
Intertwined with my kids' fluctuating emotional waves.
And my own.
The odd giggle and fit of laughter.
Trying so, so hard to keep it fun and positive.

Truth be told, I am absolutely sore, weak and tired of playing.
There's no time for parents to tend to their own needs.

Don't tell me to take care of myself!
(Lord knows I am trying)

I am busy pouring every ounce of myself into the act of holding my kids steady.
Cheering them on.
Holding it allllllll together.

Can we stop yet?

Throw the damn spinner in the garbage.
And don’t ever ask me to play, again.

I did not sign up for 12 months of twister.
No one did.

Yet the arrow keeps on spinning… and we are forced into our next move.

Tuesday, February 9, 2021

The five-year finish line

Our sweet, beautiful warrior princess has crossed a finish line we've only dreamed about. Today Brookie is officially cancer-free five glorious years!

She was in agony.
She was so sick.
She fought PTSD post-treatment.
She still fights preverbal trauma related to her journey.
She has a very real phobia of stickers that creates panic, leaves her in tears and interrupts her daily life.
She has a long, deep bravery line covering her tummy.

But she survived.
She is thriving.
She is healthy.
She is beautiful.
She is brave.
She is stronger than she even realizes.

And while she is enduring a new journey of life with celiac disease, she continues to show all of us how life is meant to be lived.

She is so real and authentic.
She deeply loves her family and friends.
She enjoys her hobbies.
She provides herself and others grace.
She embraces creativity and laughter every, single, day.

It is not lost on Jay and I how fortunate we are. We remember the dark days wondering if Brooklyn would honestly live or die. We know many children do not make it to this milestone. We wish we could change that. It hurts our hearts. xo

So we humbly celebrate today with a giant dog on the lawn, Paris decorations in our dining room and gluten-free cupcakes and pizza after school.

We will keep crying, today.
Keep hugging.
All glory to God for our healthy, beautiful baby girl.
Thank you Lord Jesus.



#cancerfree #fiveyears #childhoodcancer #thankGod


Thursday, December 31, 2020

Hindsight is 2020, after all

When we look back on 2020, what will we remember?

Will it be the heavy feelings? 
Worry. Isolation. Grief.

Or the small blessings?
Extra cuddle time. Homemade meals. Rest.

Will it be the negative comments?
Nastiness. Judgement. Trolls.

Or the kindness shared by others?
Surprise deliveries. Lovely words. Gratitude.

What will we remember, when we look back on 2020?

I hope it's the time I spent baking with my kids.
The movie nights and snacks, both outdoor and in.
The extra donations made to charities we love.
The lunch breaks chatting with my husband.

2020 was hard. So entirely exhausting.
Who would have ever dreamed of this?
Certainly not I.

Perhaps we'll uncover the lessons, when we look back.
Hindsight is 2020, after all. 

Certainly we'll remember the waves. 
The constant state of flux.
Standing on unstable ground.

But I'm not sure, what we'll remember. Only time will tell.

I notice I feel stronger, when I am less busy.
Maybe I'll remember this when my calendar is full, later next year.

I've come to appreciate the sound of silence, for no other reason than it's peaceful.
Maybe I'll remember this when my house is alive with guests again, someday.

I've found joy in having no-where to go.
Maybe I'll remember this and prioritize 'space' more often.

I can promise I'll remember the love I shared with my children and husband in 2020.
The deep conversations, and the silly ones.
The tears and the hugs.
The frustration and fear.
And the simple joy of spending time observing their own unique gifts.

Here we are, day 365 of 2020 and just hours from a new year. And while I know that midnight will not end a global pandemic, I believe we can make the choice to enter 2021 with positive, peaceful thoughts and our eyes set on the ultimate prize... a return to hugs, celebrations with the people we love and appreciation for all we learned during this very incredible year.

From my heart to all of yours; may 2021 bring you good health, a deeper awareness of self and a greater desire to do all things with love in mind.

xo

Saturday, December 12, 2020

Surrender

Surrender.
Don't hold it all so tightly.

Surrender.
Let your emotions ebb and flow like gentle undulations above your heart centre.

Surrender.
Breathe in and out, noticing the rise and fall.

Surrender.
Hold yourself in stillness and notice the space.

Surrender.
Listen to the moments unfolding all around you.

Surrender.
Be at peace. 

Nothing to do.
Nowhere to go.
Just simply, be.

Surrender.


Monday, November 23, 2020

Advocating is life on a treadmill

Tonight I feel heavy.
My head is throbbing.
Neck tight.
Eyes burning.
Exhausted.

Some days it takes all of me, to advocate.
To protect my son.
Educate others.
Keep him safe.

Some days it's exhausting.

I wonder what it's like for other families.
Not to worry or analyze.
Do they even notice this blessing?
They don't bat an eye.
I feel jealous.

Right now, it's a struggle.
It's damn hard.
It zaps my energy in minutes.
Leaves me hanging like a damp blanket on a clothesline.

Advocating is life on a treadmill.
Sometimes fast and sometimes slow.
It feels like I am going nowhere.
But I can't stop.

This little person depends on me.
His literal life depends on my resolve.
My purposeful actions.
My coaxing and educating.
My choice of words. 

Prove me wrong.

I can't stop.
Won't stop.

I support the hard things;
His daily grind to survive.
I am the body guard;
His personal safety vest.
I aim to make it bearable;
For him to live with fear.

My job is to rest,
But not quit.
Crack,
But not shatter.
Bend,
But not break.
Cry,
But not drown.

Tonight I'll silently tantrum.
Then rest.

Because I've learned that the key to advocating is rising,
over and over and over again.

With hope in my heart, 
a smile on my face, 
and the invisible shield of hugs that protect him when we are apart.