My Listen To Your Mother Experience

My Listen to Your Mother Experience

This post originally appeared on The Mighty

I never had an interest in public speaking, in fact I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe and my voice trembled as I tried to rush through the presentation as fast as possible. So it’s no surprise that I never followed any paths that lead towards public speaking in my post-secondary school years. Until my life took a new direction.

Since my daughter’s diagnosis almost 3 years ago, my goals and the way I live my life have dramatically changed. Cystinosis is such a rare disease that most people only hear of it because they know someone affected.

I aim to change that. Though there are only an estimated 2,000 people worldwide living with cystinosis it shouldn’t limit the amount of people we can educate. All we need are people willing to listen.

I began writing about our journey with cystinosis on my personal blog and got the bug for writing about it on other sites after The Mighty published a letter I wrote to cystinosis. I realized that this could be the way I get cystinosis out there and began submitting to parenting sites. I was thrilled to be able to share my stories and spread some awareness to an audience who would have never found their way to my blog on their own.

One day I saw a casting call for the first Listen to Your Mother Vancouver show. A show that invited people to read their stories related to motherhood on stage – in front of a live audience. I knew it would be an incredible opportunity to advocate for my daughter and cystinosis but I immediately dismissed it as something I simply would never be able to do.

But it stayed there in my mind, tugging at my fear of public speaking and daring me to do it anyway. If there’s one thing I’ve learned from my daughter’s diagnosis it’s that this life is fleeting. It’s too short to worry about silly things like what others might think of me. And it’s definitely too short to let my fear stop me from doing what I want, and certainly from doing things I hope will make a difference.

Choking back my fear and the rising urge to hide trembling under my bed covers, I booked myself into an audition spot and began rehearsing like crazy! I’d just written an essay I thought would be perfect. It talked generally about my motherhood journey and my dislike of the phrase, “as long as it’s healthy.” In my opinion it was universal while still a personal testament to my experience.

A couple months later I was surprised to learn that the producers felt the same way! Somehow I managed to make it through my audition without my voice breaking, though I was pretty sure my heart was only seconds away from pushing right out of my chest, and I was now officially a cast member.

On April 30th, 2016 I got on that stage, in front of almost 300 people, with 12 other incredible women, and bared my soul. I told others how much my daughter meant to me and how her disease didn’t make her less than any “healthy” child. I fought back tears when I explained how much joy she brought us and how grateful I was to have her in my life. And I made it through, despite my lifelong fear of public speaking.

At the end of the show I was in the crowd speaking with my friends and family who had come to support me when a woman I’d never met before introduced herself. She started with, “hello,” and then immediately broke into tears. She began telling me about her daughter who had cystic fibrosis and that she completely understood how I felt. She thanked me for sharing my story and I was so at a loss for words that I gave her a hug and thanked her right back.

This show has been one of the most powerful experiences of my life. It started with my desire to raise awareness but ended in me growing as a person, conquering my fear, and connecting with a stranger on a deeply profound level.

And I have my daughter, and ultimately cystinosis, to thank for it. Without them I would have never even started writing and most certainly would not have gotten up on that stage. As difficult as cystinosis can be sometimes, it is now an integral part of our lives and I can’t help but be grateful for some of the lessons it has taught me.

You can read my full “As Long As It’s Healthy.” essay on Coffee + Crumbs.

Listen To Your Mother Vancouver 2016 Cast*Pictures taken by Eran Jayne Photography

 

Help Layla’s Wish Come True

BC - PTP Social Image

On Sunday July 10th, The Children’s Wish Foundation is hosting the 5th Annual Princess and Pirates Tea Party, right here in the Lower Mainland!

The Princess & Pirates Tea Party raises funds for wish granting and is also an opportunity for children to welcome a little magic into their lives and let their creativity run wild! It includes a magical afternoon of high tea and treats, as well as a variety of activities and entertainment aimed at bringing the imaginations of young princesses, pirates, kings, and queens to life with an unforgettable, enchanting experience.

It will be taking place at the Cascades Casino Convention Centre Resort in Langley from 11:30am to 2pm.

Elsie and I were super excited when we heard of this event, and she’s already picked out her outfit (spoiler alert: she’ll be going as Elsa from Frozen). Tickets  are $25 each, and children under the age of three get in for free! We thought about inviting Linden and Daddy along but we might just make it a girls date.

layla

This year’s event will be raising funds for this little cutie, Langley local, Layla. Layla is a kind-hearted and brave young girl who loves dancing, exploring, and having fun with her older sisters. She was born with Down syndrome and various birth defects that required multiple surgeries at a young age. When she was only 20 months old, she was diagnosed with Acute Myeloid Leukemia and was only able to see her sisters once or twice a month.

Layla is now a healthy and strong five year old and is nearing three years in remission. Now that her health will allow it, Layla’s wish is to travel to Disney’s Aulani Resort in Hawaii with her family.

Tickets for the Princess and Pirate Tea Party and more info on the event can be found on their website: www.childrenswish.ca/princessteaparty. The Children’s Wish Foundation, Elsie and I hope you’ll join us for an adorable afternoon of everything princess and pirate to celebrate the joy of wish granting.

Would you like to attend this incredible event?

I’m running a draw prize from now until July 1st and the winner will receive this prize package (vauled at over $200):

Participation is super easy! Simply post a picture of your favourite princess or pirate (costume not required, adults welcome too) on social media. If you’d rather not post a picture you can also share this post to enter, or do both for extra entries!

Tag me, @elsinosis on Facebook, Instagram or Twitter, and The Children’s Wish Foundation, @ChildrensWishBC on Facebook and Instagram, @cwfbc on Twitter, in your posts. This step is very important otherwise I won’t know that you’ve shared a picture or this post (note on Facebook your post needs to be public for me to see it).

From today until Friday July 1st every post and tag will count as an entry into the draw. The winner will be announced on Monday July 4th and then we can party together at the Princess Tea Party!

Thank you so much, in advance, to everyone who helps to spread the word and raise some money for Layla and The Children’s Wish Foundation ❤

 

Tiny Superheroes

Tiny Superheroes

A few weeks ago I was browsing Instagram and stumbled across the TinySuperheroes feed and immediately got that excited feeling I get when I see every day people doing beautiful things for warrior children. There was picture after picture of cute and adorable kids all in superhero capes and their enormous smiles said it all. As did the description, “TinySuperheroes seeks to empower Extraordinary kids who exemplify strength & determination as they overcome illness or disability.” I went to the website to find out more and within 10 minutes had sent in my application for Elsie to join the squad and receive her own cape.

TinySuperheroes was started by Robyn, a mother to two children, neither of whom have a disability or illness I believe. What started out as a birthday gift for her nephew, turned into a gift for a special little girl named Brenna who has Harlequin Ichthyosis, and TinySuperheroes was born. The way it works is for every cape sold, $5 will go towards a cape for a child that has been nominated to receive one. $30 will cover the cost of 1 cape so there’s also the option to donate money so that children on the wait list can receive one sooner. Here is a great video about what Tiny SuperHeroes is all about.

Usually they have quite the long wait list so I was surprised when not two weeks later I received an email to say that something super was coming our way. The rest of the story is probably best described in pictures

As you can see Elsie absolutely loves her cape and declared within the first 10 minutes that she wanted to wear it forever! She wore it to the park and while riding her bike and loved whenever someone would ask her about her cape. She’s also quite protective of it and doesn’t like her brother touching it so once he gets a little older I’m gonna have to buy him his own, and perhaps make an extra donation. If you’re not interested in a cape but would like to help a child on the wait list get their cape a little faster you can donate on their website here.

Thank you so much to Robyn at TinySuperheroes for recognizing just how courageous children facing illness and disability are and giving them the physical proof that they can show the world. You are making a big difference in these children and their family’s lives.

It’s been quite a while since I gave an update on Super Elsie but that’s because she’s been doing really good lately! At our visit to the renal clinic in April everything looked great. Her protein/creatinine ratio came back down to 316 g/mmol after starting Enalapril in January and she gained 1.15kg in three months, which we were so happy about. Unfortunately the next day she got really sick and we had to take her the ER to treat her for dehydration because she wasn’t able to take anything in or keep anything down. Since then she’s refused to drink any water with DuoCal in it so I don’t think her weight gain will be as great when we see them again in July.

However, slowly but surely I’ve noticed her eating seems to be getting better. She still only eats a small variety of food and tends to eat the same 3 foods for days but the volume she takes in is quietly getting larger. Not always, but every now and then she’ll eat everything on her plate and ask for more. She’s recently become a pasta fiend and usually eats a ton so that always makes me smile. I would say 75% of the time she still eats like a little bird, slowly picking at tiny amount on her plate, but that 15% of eating well is giving me so much hope for the future!

Beads of Courage and Bravery Buddies

Beads of Courage

As much as I try to shine a positive light on living with cystinosis and strive to treat Elsie like any other little girl, there is no denying that cystinosis can be heavy. She has a lot of responsibility pressing on her little shoulders and a lot of unpleasant experiences to endure. I’ve spent more than a few late nights worrying about how all of this is going to affect her as she gets older. More than anything I want Elsie to understand that she must take care of her body and stay compliant with her medications, while at the same time not feel burdened by them. She should be proud of her fortitude and resilience.

So when I learned about the Beads of Courage program, I was ecstatic. Beads of Courage is an arts-in-medicine program in hospitals across Canada, USA, Japan, New Zealand and the UK that help children with serious illness record, tell and own their story of courage through beads. Children are given different coloured beads for every procedure, scan, poke, etc, they do which allows them to share their stories with others and take pride in all they have overcome. Below is a great video explaining what the program is.

Did you get through that without tearing up? I made it until we met Scott and then lost it. Such a courageous young man ❤

I was so excited to sign Elsie up but when I went to the participating hospitals link, I found that BC Children’s Hospital, was not listed. Luckily they also have a Beads in the Mail program and I quickly applied for Elsie to be a part of it (note: if you are in Canada, like us, you need to apply on the Beads of Courage Canada site). We heard back quickly and I was sent a link to send in my request for beads! To start with they send you a length of string, white block beads spelling the child’s name and one bead for each category you request to signify treatments completed before enrolling in the program. Elsie was so excited to get her beads and repeatedly asked me when they were coming.

Elsie's Beads of Courage

I think they took about 3 weeks or so to arrive and when they did she was not disappointed. We went through all the colours, I told her what each one meant and she got to string the beads herself. She wore them around her neck for 2 days straight. Now whenever someone asks to see them she’s always so happy to pull them out and ask me what the different colours mean so she can tell them her story. I think her favourite one is the glow in the dark bead (it’s mine too, because glow in the dark man!).

I’d say the only draw back to the beads in the mail program is having to wait for the beads. I keep meaning to write them and ask if I can pre-order the beads when I know that appointments and blood draws are coming up. One of the goals of the in hospital program is to strengthen the relationship between the child and their healthcare team as they are the ones who present the beads in acknowledgement of what the child just bravely went through. So if I had the beads ahead of time, Elsie could also experience that part of the program.

In addition, they also have a sibling program and I plan to enroll Linden when he gets a bit older and stops putting everything in his mouth. Already he’s always trying to get his hands on Elsie’s meds and you can see how much he wants to be just like his big sister.

If you’ve never heard of Beads of Courage please take some time to check out their website. This is one of those organizations that I recommend everyone look into. If you don’t have a child with a medical condition, they are always looking for donations and they are making an incredible impact in so many children’s lives.

Not even two weeks after I’d ordered Elsie’s first set of beads I also discovered an amazing shop called, Bravery Buddies. A mother of two boys with cystinosis had shared the story of Bravery Buddies on Facebook as she was friends with the woman behind the stuffies. Her name is Leslie and she originally created some buddies for her three triplet sons who were each diagnosed with retinoblastoma. She wanted something they could cuddle with during their pre and post op recovery from the many surgeries they had and also something that could display the Beads of Courage they received during their treatments. The buddies have mouths you feed the beads into so they can be displayed in the clear pouch of their tummy.

After her three boys cancer became more stable she wanted to give back and help support other children going through their own medical journeys and Bravery Buddies was born. She uses Bravery Buddies Facebook page to spotlight these courageous children and each one receives a free buddy. If people would not like their children to be spotlighted or want to help financially support the stuffies they can purchase a Bravery Buddy on her Etsy page as all money made through the site is used to create more buddies.

Bravery Buddies

As you can see in the picture above Elsie loves her buddy, whom she has named “Pinky.” And as a fun bonus Pinky’s ears and legs were made by me! Leslie had posted that she was always looking for people to help make pieces of the buddies or even just donate fabric and I had a ton of fabric left over from various projects. The ears are from Linden’s first Halloween costume and the legs are left over from a cowl that I made Elsie, one of the first things I ever sewed on my new machine. I was so happy to be able to contribute and sent along a few sets of faces, ears and legs. Those little personal contributions make Pinky that much more special to me and Elsie.

If you have extra fabric on hand and maybe even some extra time please consider donating to Bravery Buddies. I can’t think of a better way to use fabric scraps.

It’s difficult to watch your child go through so many hardships and feel like you can’t do anything for them. Thankfully there are programs out there like Beads of Courage and Bravery Buddies that help parents like me do everything they can to empower their child and show them just how incredible they are. Elsie is the bravest person I know and I hope that she knows just how courageous she truly is.

Listen To Your Mother

I am so super excited to announce that I will be reading a special essay on my somewhat unique perspective of motherhood at the very first Canadian production of Listen To Your Mother!LTYM Image 1

The inaugural Listen To Your Mother Vancouver show will be taking place on Saturday April 30th at 7:30pm at St James Community Square in Kitsilano and I can’t wait.

Listen To Your Mother (LTYM) is a one night event that gives motherhood a microphone. On their website they state their mission is to “take the audience on a well-crafted journey that celebrates and validates mothering through giving voice to motherhood–in all of its complexity, diversity, and humor.” It was started in 2010 by Ann Imig in Madision, Wisconsin and over the years has grown into an event taking place in over 40 cities across the US and now Canada! You can check out readings from every past show on their YouTube page.

I had the honour of hearing my fellow cast mates essays a couple weekends ago and I was completely blown away by the amazing talent as well as their hilarious, beautiful and touching words. I was surprised at how instantly I connected to all the pieces in some way and I hope that they found mine just as relateable. Some of the amazing cast include Rant and Roll, Spill It Mom, Andrea Paterson, Eran Sudds of Good Mother Project, Laughter Zone 101 and missteenussr.com.

It’s going to be a really amazing night and I’m excited (and also terrified) to get out of my comfort zone and do something I never, ever thought I would do. So if you’re in Vancouver and want to come show your support, tickets are only $20 and can be purchased here. I Hope to see some friendly faces there!

LTYM-2015-poster-template

Holiday Giving

Holiday Giving

Before having children the holidays were never really that big of a deal to me. It was always nice to have those few days that our family got together to celebrate and I loved trying to find that perfect gift for them but holiday cheer and activities were never high on my priority list. However since having Elsie, ever year I want to do more and more to celebrate and give her, and now Linden, that sense of wonder and amazement that I remember having as a child. Now that Elsie is old enough to start understanding Christmas, I also want her to learn the true holiday spirit of kindness and giving and have found the perfect thing for her, and all children!

Head on over to Emily Ley to purchase this awesome Random Acts of Kindness printable advent calendar. You get 25 RAK activities that can be done each day leading up to Christmas as well as 25 cards to hand out to your lucky recipients. It’s a great way to get your yourself and your kids involved in your community and spread some holiday cheer! And the best part about this advent calendar is that all proceeds are donated to the Cystinosis Research Foundation where 100% of donations go to funding research towards Elsie’s (and everyone else with cystinosis) future.

Check out Emily’s blog to learn why she chose to get start this amazing fundraiser for cystinosis.

Today Is a Miracle

If you’re looking for a Christmas present that also does some good in this world please also check out the shop Today is a Miracle. Started by Tahnie over at A Happy Girl to celebrate the 20th anniversary of her kidney transplant, $5 of every purchase is also donated to cystinosis research as Tahnie herself thrives and lives passionately while she brings cystinosis along for the ride. “Today is a Miracle” has become a phrase that resonates with so many people from all backgrounds and walks of life, whether they be health related or spiritually related struggles, I think everyone would benefit from the reminder.

As of late “Today is a Miracle” has become a reminder for me to stay in the moment and be grateful for my beautiful babies, as I struggle to find my place in motherhood and the challenges that parenting two children entails. When you’re home with them day in and day out its easy to get caught up in the everyday hardships of toddler tantrums, a baby that needs you for everything and just trying to keep these two little beings entertained and alive! I’m grateful to have a nice, comfy shirt that I can throw on and be reminded that despite everything I have two children that I love more than anything and who love me back and so much to be thankful for!

These are just a couple ideas on how you can also bring some thoughtful giving into your own holiday season and no matter where you are or how you celebrate I hope that everyone has some truly loving and wonderful holidays!

She Just Keeps Growing!

Growing
Nothing can hold this girl back! We recently had our quarterly check up at the renal clinic and Elsie is doing well and growing like a weed. She is now in the 24th percentile for weight and 31st percentile for height which is just so amazing to hear. Take that cystinosis!

Right around this time two years ago our world crumbled when we learned our little girl had a rare, chronic disease that we had never heard of. The heartache and fear we felt in those first few months is still fresh in my mind and raw in my heart. To have come so far in a relatively short period of time is just incredible. When Elsie was diagnosed she wasn’t even on the charts for weight and height, so to know that our struggles to get food and basic nutrition into her have not been in vain is so rewarding.

I feel like our decision to forego a g-tube and instead start her on growth hormone shots at such an early age has also been validated. Though Dave and I both decided and still believe that this decision was/is the best for our family I have to admit that it is one I have second guessed quite a bit. Especially when we are still having to pin down and force the shots on a screaming and distressed Elsie. It’s not something that any of us enjoy, but to know that it’s been working has been nice. Our nephrologist mentioned that once she hits the 50th percentile he will recommend that we take a break and hopefully she will be able to keep up with these curves on her own. And who knows, the way she’s been growing lately I think she could do it!

Her potassium is still on the low side and we have increased the frequency to 4 times a day but it doesn’t seem to be helping much. A few months ago she did a couple blood tests, once just before her first dose of potassium and another one 2 hours later and the later one was actually slightly lower than the first! I forgot to ask our nephrologist what that meant but he didn’t seem to be too concerned and our nurse said through email that he thought this was a typical result for cystinosis patients. So for now we are leaving her potassium as is and just monitoring. I’d like to start trying to introduce her to more potassium rich foods and see if we can get her interested in any of them. I found this great list online about potassium rich foods online a while back so it looks like beans is the one to try first. If anyone has any yummy bean recipes (the saltier the better) please send them my way!

So now we are just waiting to get the results of her latest WBC cystine test back but we’ve got our fingers crossed that it will finally be below 1 again. Her cystagon was just increased to 250mg four times a day solely based on her new height and weight but she has been getting sick again most mornings and even some evenings so we may need to go back to 225mg. Ideally I would like to know what her WBC cystine level is first but we will probably not receive those results for another month and I think we should decide sooner than that. It’s so hard to watch your child throw up every morning, especially when we’re trying so hard to get food and pediasure into her. Hopefully this nausea will turn around soon, but until then at least everything else is going great for her!

She Just Keeps Growing