Saturday, September 26, 2015

I Know Different

A poem: I KNOW DIFFERENT
by Tricia Proefrock
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Dear Mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do... I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me... I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid... I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me... BUT I KNOW DIFFERENT, MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.



Thursday, September 24, 2015

Every Meal is a Happy Meal

We've had our fair share of hospital visits with our son, Brennen. He has had a number of surgeries that have required him to be admitted to the Janeway for several days and nights. We are fortunate that we live fairly close to the hospital, so Andrew and I can take turns running home to shower and change, and to catch some much-needed rest before facing another challenging day. For families who live outside of the city, that is not so easy. It must be a tremendous worry to have a sick child, and be faced with leaving your home, unplanned, for an undetermined amount of time.

Ronald McDonald House Newfoundland and Labrador offers a home-away-from-home for families, providing comfortable and affordable accommodations while their children receive care and treatment at the Janeway Children's Hospital in St. John's. Their priority is to provide a secure and stable environment for families during what can be a very stressful time.

Our local Ronald McDonald House provides the simple things that put some joy and normalcy back into families lives, like sitting down for a home-cooked meal together, and waking up together, under one roof, ready to face the tough day ahead. Some families stay for just a short time, others for weeks, months, and sadly, some stay for a year or more. Ronald McDonald House Newfoundland and Labrador truly offers a place where families are taken care of so that they, in turn, are better able to care for their children.


Every day for the past 10 years, Canadians have supported Ronald McDonald Houses across the country through the McDonald's Happy Meal donation program - 10 cents of every Happy Meal purchase goes directly to RMHC. The program has helped support 20,000 families every year across the country.

On September 17th, Ronald McDonald House families had the opportunity to thank Canadians for their support in a very special way! All customers in McDonald's restaurants across the country received their order in a Happy Meal Box that included a personal Thank You card from a family that has stayed at a Ronald McDonald House. This was the first time that Ronald McDonald House families have been able to express their gratitude to Canadians for their support through the Happy Meal program.

Click this video to watch the magic happen!



Over 75 families from Ronald McDonald Houses across the country created personal Thank You cards, including Selina and Sheldon Carroll. They have been staying at Ronald McDonald House NL since March, when their son, Michael was born prematurely. (That's Michael's little footprint on the blue heart!) The Carroll's are from Labrador City.


Michael Myles Joseph Carroll was born on March 20, 2015 at 8:41 am, weighing 2 pounds 2 ounces.

His birth was very early, and with that came a whole slew of premature complications. Michael was also born with several surgical complications which cannot be repaired until he grows bigger and stronger. His Mom, Selina says, "Throughout it all, our son has been such a fighter. He has been through more in his short life than Sheldon and I have been through in our whole lives. He is our little miracle, our hero and our true inspiration. Words cannot describe how thankful we are for the love and support that our families and friends have shown to us throughout this very difficult time. We can't wait for the day that Michael is strong enough to come home."


Selina says that they are extremely thankful to Ronald McDonald House. Inside their Thank You card, she wrote:

"Thank you from the bottom of our hearts for providing us a second home while our premature son is being cared for in the Janeway. Through all our ups and downs on Michael's journey, the staff and volunteers here at the Ronald McDonald House have been so supportive and loving. From the home cooked meals, happy faces and late night chats, our stay has been second to none. So very grateful for everything and everyone. We have met friends here that we will have for life, and that is a great gift."

I was thrilled to have been invited to attend this very touching event. It was a pleasure to meet this sweet family, and to learn about their precious baby boy. It was especially moving to see the expression on people's faces when they unexpectedly received a Thank You card with their meal.

"Thank You."

There is so much packed into those two little words. Gratitude is a wonderful thing, and I firmly believe that it is just as important to show it as it is to receive it. Appreciating the beauty in the big and small things, in the people around you, in the good efforts and good intentions of others, and recognizing what makes you truly thankful and happy about right now can have a powerful impact on your state of mind. When faced with a challenging situation, it can be comforting to acknowledge the blessings, and to give back and show gratitude to others for their acts of kindness towards us.

Little moments are to be celebrated, and on this day, we celebrated all of the people who purchased meals at McDonald's restaurants, who in turn helped people like the Carrolls in a big way.

It was a very moving experience, and one that will stay with me, as I try to instill a strong sense of gratitude within my own family.
We are happiest when we are most grateful.


To see all of the cards and for more details on the Happy Meal program, please visit RMHCThankYou.ca
 

Sunday, September 20, 2015

NatureBox - Snacking Made Easy

We have recently subscribed to NatureBox, and I couldn't be more excited!

NatureBox is smart, delicious snacking made easy! They deliver over 100 bold, satisfying choices right to your door. Whether you’re looking to snack smarter at work, serve a satisfying spread at your next get together, or feed an active family on the go - NatureBox offers a range of plans for all of your snacking needs. All of their snacks are made with zero artificial nonsense and high-quality ingredients you can trust.


Our first NatureBox (the Sample Box) arrived last month..  


Our Sample Box included four sample-size bags of Sweet Blueberry Almonds, Jalapeno Cashews, Masa Crisps, and Cranberry Medley, as well as a full-size package of Dark Cocoa Nom Noms. Andrew and my Mom and I had a "tasting party", where we tried all 5 of the snacks and voted them in or out! 


We all agreed that the Dark Cocoa Nom Noms were a favourite. I was excited about them initially, simply because they were called "Nom Noms", but it turns out I loved them for many other reasons. They were large, satisfying pieces of moist dark chocolate and rolled oats, sweetened with a touch of honey. Super yummy.

The Masa Crisps were a second favourite. These corn chips with flax seeds are the perfect snack when you're craving something salty. Mom and I agreed that we could eat a whole bag in one go (but I wouldn't recommend doing that.)

The Sweet Blueberry Almonds were a big hit with my Mom, though she likes anything that has anything to do with blueberries. No contest.

Andrew's favourite was the Cranberry Medley - a fresh new take on dried blueberries and cranberries, flavoured with pomegranate and acai. With no artificial sweeteners, I was surprised by how naturally sweet and juicy they were. Not too dry and tart, like some cranberries. I loved this one as well.

Our least favourite of the bunch was the Jalapeno Cashews, but they weren't bad! Pretty spicy, but very tasty with a bit of a Southwest vibe. I liked them, but wouldn't order them again.

So.. four out of the five snacks were voted in! Not bad, for a random sample assortment!

We received our first full-size subscription box just the other day. I could hardly wait for it, after having such a great experience with the samples, so I was very excited when it arrived! 




This NatureBox contained 5 large bags of delicious snacks! We got the Salted Caramel Pretzel Pops, Blueberry Almond Bites, Sea Salt Sun-Crunch, Sour Cream and Onion Almonds, and Whole Wheat Blueberry Figgy Bars. Yum, Yum, Yum, Yum, and Yum!! Five out of five voted in!


I loved all of these snacks! They are delicious, nutritious, and perfect for anyone with a busy lifestyle (that's everyone these days). I love having healthy snacks on hand to just grab and go on our way out the door, or to munch on in-between meals without feeling guilty. We don't eat a lot of "junk" food in our house, and I used to make a really yummy, healthy granola bar, but honestly, "Ain't nobody got time for that!". Andrew and I took the Whole Wheat Blueberry Figgy Bars with us on a hike over the weekend, and they totally hit the spot!


NatureBox believes that snacking can be part of a well-balanced lifestyle, which is why they deliver a world of handpicked, unique and nutritionist-approved foods right to your door. Sign up for your own NatureBox subscription, and receive $10 off your first box with coupon code: share10off

Smart. Delicious. Easy. It’s time to feel great about snacking! www.naturebox.com

Wednesday, September 16, 2015

A Sunday in the Garden

Last weekend, Andrew and Brennen and I enjoyed a wonderful afternoon at the MUN Botanical Garden. The gardens are situated on 110 acres of protected nature reserve, right inside the city. The MUN Botanical Garden is a research facility, public garden, and education centre, which includes 5 nature trails, a large cultivated garden area, and a greenhouse, all open to the public. If you haven't been here, I can't urge you enough to visit!

There are many different types of gardens represented here. The first garden you come to as you head out on the trail is the Medicinal Garden, that has a large variety of clearly labeled plants that have been traditionally used to treat such ailments as blood and circulation problems, respiration, skin and kidney function. It is fascinating to see where so many of our medicines and herbal remedies have originated. There is also an Asian Garden, Heritage Garden, Rock Garden, Shade Garden, and Vegetable Garden.

As it is late in the Summer, I was surprised to see so many of the plants and flowers out in full bloom! I'm sure the gardens would look different every time you visit, depending on the time of year and what is in season.

Brennen loved feeling the leaves as he brushed by them. He listened to the birds chirp and flutter by, and we took note of the many different scents - the 'perfume' of the natural environment, as we made our way through the trails.


We spent a fair amount of time enjoying the cultivated gardens, taking in the beauty of a Sunday afternoon spent quietly among the brilliant colours of nature. Next, we headed on to Oxen Pond, where we stopped to feed the ducks, who were very excited to see us! Luckily, we had purchased a little bag of duck food for 50 cents at the Field Centre before heading out on the trail.


We had such a lovely time at the Botanical Garden, I'm sure we will be frequent visitors. Most of the trails are hard-packed stone or boardwalk, and are fairly wheelchair accessible. The Main Trail, which connects all other trails, is actually the remnants of an old gravel road and extends from one end of the garden to the other. Honestly, I don't know what took us so long to decide to visit, but now that I know about this hidden gem, we are going to take advantage of it! Andrew and I already plan to go back to the Garden Café for lunch some day, and hike up to the lookout on Trail 3 (we didn't attempt it this time).

I have also signed up to do a workshop on "Growing Air Plants" in October. I am obsessed with Air Plants. I don't understand them, but I like them!

Sunday, September 13, 2015

Tulip Tales: Nolan

I am so excited to share the story of this beautiful little boy named Nolan. Nolan is one of the children in my care at Little Tulips, and we are so happy to have him in our group. When Nolan's Mom first contacted me about a space in our child care program, we connected right away. There's just something about meeting another mother who has a child with extra medical needs, another mother who has spent countless hours at doctors appointments and hospital visits, another mother who "gets it". 

When she sent me this piece, Jan said, "I won't lie, it was hard to write. It's hard to read. But it's the beginning of his story, and we don't know where his story will go as he gets older."

It is a beautiful story. So please, pull up a chair, settle in, and read about our sweet boy, Nolan.

*****

When we decided to start trying to have a baby, I remember standing in the kitchen with my husband and saying “What if something goes wrong”?

I remember that moment like it was yesterday.

I enjoyed being pregnant. I remember where I was and what I ate before the very first kick. I remember all the kicks after. I remember hearing “it’s a boy” during our first ultrasound. I remember giving up anything with tomatoes in it after experiencing heart burn for the very first time in my life. I remember my poor husband telling me, again, to “turn on your side, honey, you’re snoring”. And I remember the day that my fears came true.

During our 34 week ultrasound, the technician was quiet. She said she wanted to run something by someone else and I immediately panicked. Five minutes later, we were brought to a room with our OB/GYN, who was in the hospital that day.

Our unborn son had hydronephrosis, excess water on his kidneys, likely caused by Posterior Urethral Valves (PUV), but an official diagnosis couldn’t be made until he was born. The congenital condition affects only boys and occurs in about 1 in 8,000 to 25,000 live births. It is not inherited in any recognized way and seems to happen in the early stages of pregnancy when the organs, muscle and other tissue starts to form. It is not due to anything a mother did or ate during pregnancy, it just happens. And it happened to our child.

PUV are extra flaps of tissue that grow in a boy’s urethra, blocking the flow of urine. The severity of the condition depends on the degree of obstruction. The doctors wouldn’t know how severe his PUV were until he was born. From that point on, I would receive weekly ultrasounds to monitor my amniotic fluid. We already had some idea that his condition would be more severe, as most mild-to-moderate cases aren’t identified until after birth. The fact that his was found during an ultrasound indicated a more serious case. If urine was backing up into his kidneys, which seemed to be the case, he could potentially be in kidney failure at birth. The PUV were also damaging his bladder.

Google was my hope, my devastation and my obsession.

We met with the NICU doctor and received a tour, knowing that we would be going there. We met the surgeon who would be performing surgery on our child to give him a vesicostomy (an opening between the abdominal wall and the bladder that helps prevent harm to the kidneys - he would ‘pee’ through a hole in his belly for the first year of his life to give his bladder a chance to relax). He would also have surgery to ablate (remove) the valves, but that wouldn’t happen until a year later; the vesicostomy would be reversed at the same time.


Nolan was born on May 30, 2014. He was beautiful. He was finally here. And his PUV were severe. On day 1, he had surgery. For 12 days, we lived in the NICU at the Janeway, but with no pediatric nephrologists here, the doctors were working closely with IWK Children’s Hospital in Halifax, NS. On day 12, we were transferred to the IWK.

Nolan had to have a Glomerular Filtration Rate Test (GFR) – a test to see how much function his kidneys had. We were told that we wanted to see the number 15. Anything less than 15% function would likely require immediate dialysis and transplant as soon as he was big enough.

The number came back. His right kidney wasn’t functioning at all. The left kidney was functioning at only 7%.

We were devastated and still trying to wrap our heads around the fact that our little boy was very sick, let alone the possibility that he might need dialysis and a transplant so soon. But our nephrologist was optimistic. He said he would do whatever he could to avoid dialysis right away. And he did it.

Nolan had blood taken every day for the first 8 weeks of his life, monitoring creatinine, sodium, potassium and other levels. We tinkered with medications. A LOT of medications. But the tinkering worked, and his levels slowly started to come down.


You don’t think about how important something is until it doesn’t work. The kidneys are important because they keep the composition of the blood stable, which lets the body function. Healthy kidneys prevent the buildup of wastes and extra fluid in the body. They keep levels of electrolytes stable, like potassium, sodium and phosphate. And they make hormones that regulate blood pressure, make red blood cells and help bones stay strong. Nolan’s kidneys can’t do these things on their own, so these medications help him.

So while we were learning how to be parents to this beautiful child, we also learned what each medication was for. How much to give. How often.  We learned that he will eventually need dialysis. We learned that he will need a transplant.

My husband had to return to work as he had been off for much longer than we anticipated. I brought my son home for the first time a few weeks later on July 12th, 2014.

Since then, we have been very closely monitored by a great team of people from both the Janeway and the IWK. We have been hospitalized here at the Janeway for UTIs, which he is prone to. We regularly see his nephrologists, urologists, pediatrician, dietitians and many more health care professionals. He’s a pretty loved regular at the Blood Collection clinic at the Janeway. We’ve travelled to the IWK three times since we first came home – we’ll be travelling there a few times a year for a very long time. At each visit, his GFR results have improved – from 7% kidney function at birth, to 30% kidney function in May 2015. His right kidney also appears to have shown up to the party – it’s doing a little work as well. Better late than never!


Nolan’s PUV presents a number of challenges, based on the severity of his condition. Obviously, the damage to his kidneys presents the most pressing medical issues, but the PUV has its own challenges for his bladder and urinary tract as well. We don’t know for sure how it will affect him, but from speaking with his urologists and other parents of PUV boys in a support group, we’ve learned some possible impacts for the future. He may require frequent catheterization or other types of intervention. He might do well with medications that are frequently used to treat the bladder for PUV boys. We just won’t know until we get there. Every PUV story is different.
 
What we do know for sure is that he has Chronic Kidney Disease (CKD) because of his PUV, and there’s no reversing that. He will need a kidney transplant. We are hopeful that we can get to age 7 or 8 before we need to go down that road. But again, we just won’t know until we get there.

Nolan’s kidney failure causes problems in his everyday life, but, like a lot of chronic illnesses, you’d never say it by looking at him. Kids with CKD feel pretty yucky a lot of the time. Nausea and vomiting are very common. Lack of interest in eating is also very common, which contributes to slowed growth. Because of this, Nolan had surgery to insert a G-Tube just before his first birthday. We struggle with solids and cheer whenever he eats the smallest thing. We experience the nausea and vomiting every day – the first year was a messy one! But we also experience giggles, clapping hands, smiles for his mama and daddy and all the things that we hoped for when I was pregnant and writing in his journal.

Despite his CKD, Nolan is a happy child who is meeting all his milestones. He is all about trucks. All trucks, all the time. He loves his thumb and his blanket when he is sleepy. He loves his dog, Baxter, and chasing mama to the end of the hall. He loves raspberries on his belly from daddy in the mornings and his friends at daycare (another miracle – we were told very early on that many mothers of kidney kids are not able to return to work. Luckily for us, Nolan is doing well and there are people like Julie and Andrew in the world, and they are a part of our circle).


But, like any mother, I still worry.

I worry about Nolan’s growth. I worry about the problems we’ll have with potty training. I worry about how other kids might treat him. I worry about infections. I worry about dialysis. I worry that I won’t be a match for a kidney transplant. I worry about his body rejecting whatever kidney he does receive.

But all the worry in the world doesn’t change the fact that we have a handsome, sweet, funny, strong-willed little boy who has a beautiful circle around him – family, friends, neighbours, health care professionals, child care professionals, pharmacists and even strangers. I’ve said it many times – Nolan might not yet know how big and beautiful his circle is, but until he does, we certainly do know it, and we appreciate every bit of love and support we have received since his birth.

Having a child with a chronic illness is not easy. For a long time, I found it very difficult to be around “normal” babies. I didn’t want to be the mother that other mothers pitied because her child was sick. From our many hospital stays, I’ve learned many things that I never thought I would need to know. I’ve met many families who are facing extraordinarily hard battles with their children’s health. I’ve learned that there are no guarantees for anyone in this life. Not even sweet, beautiful, innocent children. And that every day with them is a gift. It’s not always easy; sometimes it’s the hardest thing you’ll ever do. But it’s a beautiful gift.


We have been very lucky. While we might struggle with eating and growth and nausea, Nolan is doing very well right now. I know that we will have hard days, and even devastating days. I know that dialysis will be an adjustment for all of us, but mostly for Nolan. I know that I will be a wreck on transplant day. But I also know that we will have good days and that whatever comes our way, we will get through all of it together. With Nolan. With our circle. And he will always know that we are there with him, doing the best we can for him, because he is worth all of it and more.

He has shown us, so many times, how strong he is. We are so proud of this kid, so proud to be his parents. Our lives might not be “normal”, but whose life is normal, anyway? Medications, feeding tubes, frequent appointments - this is our normal. And it’s awesome. It’s awesome because Nolan is in it. We soak up the good days and cry on the bad. But every day, we know our boy couldn’t be more loved.

That day, in the kitchen, my husband reassured me that our yet-to-be-conceived child would be fine. And that if, indeed, anything did go ‘wrong’, we’d get through it.

He was totally right.

Look at this face.

Totally right. Even when things go ‘wrong’, they can be perfectly right.


*****

Jan, thank you so much for sharing Nolan's story. Thank you for trusting Andrew and I with your precious boy, and for including us in the circle of people who love and care for him. It truly is an honour to be able to spend time with him and to see the joy in his face and the wonder in his eyes! Nolan is an amazing little boy, who is curious and capable, and full of life!

Seeing your child go through all that Nolan has had to endure, and the struggles he will continue to have would be hard for any parent to accept. When raising a child with medical issues or extra challenges, a certain amount of pain is unavoidable, but so is joy. Our children are a gift, and we have the incredible opportunity to watch them grow and look at life and be grateful for all of the amazing things that we have. Nolan is strong and he is a fighter. You are strong, but he will make you stronger. There will be days that are hard. Weeks that are hard. Months that are hard. But you can do this. You are the perfect mother for Nolan. And just like you said, he is "perfectly right".

*****

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

Friday, September 11, 2015

Universal Design - Building for Everyone

The Independent Living Resource Centre recently hosted an information session on Universal Design.

Betty Dion, of Betty Dion Enterprises Limited was in town to share her 35 years of experience and expertise in universal and accessible design. She presented on the principles of universal design and how they can be incorporated into the built environment. "Incorporating universal design and accessibility is integral to good design as it ensures the usability of the built environment for all people, including persons with disabilities."

Dion has authored a book investigating how to create more accessible built environments for people with disabilities and older persons around the world. International Best Practices for Universal Design: A Global Review compares international codes and practices from 16 international jurisdictions, in order to determine the "best practice" for common accessibility issues. Some issues covered in the book include: doorways, ramps, washrooms, turning radius, communications, and the use of colour and texture in way-finding cues. 

At the Bally Haly Country Club in St. John's this week, Dion addressed a group of over 100 attendees, including politicians, architects, engineers, health care professionals, and members of local disability-related organizations.


The number of people worldwide living with at least one disability is exponentially increasing, and something needs to be done on a large scale to accommodate this growing number of individuals. In order to make an inclusive society a reality, it is necessary to identify and remove barriers to access. Universal Design and Inclusive Design provide guiding principles that consider the needs of everyone and seek to create an environment that is usable by the greatest number of people, regardless of ability.

The seven principles of Universal Design are:
1. Equitable Use: The design is useful and marketable to people with diverse abilities.
2. Flexibility in Use: The design accommodates a wide range of individual preferences and abilities.
3. Simple and Intuitive Use: Use of the design is easy to understand, regardless of the user's experience, knowledge, language skills, or current concentration level.
4. Perceptible Information: The design communicates necessary information effectively to the user, regardless of ambient conditions or the user's sensory abilities.
5. Tolerance for Error: The design minimizes hazards and the adverse consequences of accidental or unintended actions.
6. Low Physical Effort: The design can be used efficiently and comfortably with minimum fatigue.
7. Size and Space for Approach and Use: Appropriate size and space is provided for approach, reach, manipulation, and use regardless of user's body size, posture, or mobility.

A barrier-free environment is one that benefits everyone, not only people with recognized disabilities. Making buildings and other public spaces accessible to people with disabilities is about more than just building ramps. From bathrooms to classrooms, airports to workplaces, Universal Design takes into account the reality of these different environments and whether or not people with disabilities are fully able to benefit from them, as well as addressing any barriers that may be preventing full and equal access.

Betty Dion won the 'Accessibility by Design' Award for her work on the Ottawa McDonald-Cartier International Airport. After touring the airport, Dion had someone comment to her that they "didn't see anything for people with disabilities in there". That is exactly the point. Universal Design is not meant to be obvious or to single anybody out. It is meant to include all people, without segregation. Universal Design is just good design.


A couple of years ago, we built our beautiful new family home. We incorporated many elements of Universal Design when designing our home, and we created an accessible space that meets the needs of our family.

You can see our home featured on Houzz.com here -
My Houzz: Universal Design Helps an 8-Year-Old Feel at Home

For more information on Betty Dion and Betty Dion Enterprises Limited, visit www.bdel.ca