Wednesday, April 30, 2014

Winner, Winner, Chicken Dinner!

I am so excited to announce the winner of my Mother's Day Contest!

My request was this : "Tell me about your connection with "Tulips".  Whether you are a parent, family member, teacher, caregiver or volunteer, tell me how someone with special needs has touched your life."

I received so many wonderful comments from you guys!  Honestly, your words really touched my heart.  I received some beautiful entries from friends who I'd expected to hear from, and then others from acquaintances who totally surprised me with their thoughtfulness.  Re-reading them all today, I could barely get through them without crying (ok, I did cry. I'm a crier).  There were some that I tried to read out loud for Andrew, but I had such a lump in my throat that I had to stop.  He then read them all himself and was just as moved as I was.  He even said, "How many of these can we give away?! Can we just buy a bunch and give them all copies?!"  Seriously.  They were that good.

One comment was selected randomly, and I am happy to say that Ellen Foley is the winner of this beautiful canvas print by The Grumpy Goat Gallery!!!  Yay!!  Ellen, I just know you will love this painting, and I know that it will mean a lot to you. Please send me your mailing address and it will be shipped to you from the gallery!

Copyright © The Grumpy Goat Gallery

This was Ellen's contest entry:

Thanks to my Mom, I grew up knowing the importance of every child, especially children with special needs.  I was very fortunate to have a wonderful mother who was a nurse for 30+ years at the Children's Rehabilitation Centre.  In the early 80's when things were much different, we would often go and visit and play with the patients at the CRC, many who were inpatients, living away from their siblings and families. Later in life, I asked Mom why she did that and she said she always wanted us to know that no matter what someone's circumstances where it was important to play, have fun and bring a smile to someone's face.  I am so thankful that I had a Mom who taught us what is truly important about life, kindness and people! 

Here are just a few of the other entries I received.  Thank you all again for your beautiful words!  And thank you to Cara and Pam at The Grumpy Goat Gallery for donating this canvas print.  If you didn't win, I hope you will all go buy one!  

So blessed to have met Brennen last Christmas and to share the amazing adventure of getting him to the North Pole. I have worked with special needs children/adults in the past but this experience for me was different. It really touched me! I feel very fortunate that I met Brennen. Julie and Brennen continue to inspire me to be a better Mother through the tiptoeing blog. There's a deep strength and love there that I enjoy letting into my life. xo
Kerry Martin

I was 18, entering my 2nd yr at university and became friends with Carolyn who, like me, stayed in residence. Carolyn had Frederick's Ataxia, a progressive condition similar to Muscular Dystrophy. She used a wheelchair, underwent surgeries to place a steel rod in her back etc. When we were hanging out, shopping, navigating snow drifts to get to the next party at residence, I quickly learned to see beyond the surface of a person's disability. Knowing Carolyn, who passed away about 10 years ago, has allowed me to be a better mother to my daughters, especially for my girl Olivia who has Cerebral Palsy.
Glenda Power

My connection with Tulips began 32 years ago when I began working with awesome families and their little tulips! I have had such a fulfilled life watching the love and dedication these families have for each other. I wouldn't change one moment of my career and now that I have retired I think of all these families who have touched my heart everyday!
Robin de Verteuil

Since tulips have become somewhat of a symbol for children with disabilities, my connection can be summarized as: like tulips brighten a garden, the kids I have met over the past four years have brightened my life. Through Easter Seals NL and a school program called "Involve", I have found my passion in working with kids with special needs. Nothing will ever compare to the feeling of seeing a person achieve something they never thought was possible. 
Thank you,
Natasha Noel 

As a retired teacher, I have felt the joy of working with such special children. It is so inspiring reading your blog. Your passion for your beautiful son has led you on a wonderful journey to help many others!
Anne Bishop

On April 4, 2012 we welcomed our beautiful baby boy Andrew to the world and our little family!! Due to lack of oxygen and blood to the brain during birth, Andrew was diagnosed with CP. Everything changed! Life, love! We became closer and learned that love, family and friends were going to guide us on this road of the unknown. We may not know what is ahead but as long as we have each other, I know we will be ok! Andrew is our light and we will follow him wherever he may go. The photo reminds me of growth. And that is exactly what we are doing together. Growing!!!
Thank you,
Erica Coady

Monday, April 28, 2014

Tulip Tales: Benjamin

Meet Benjamin -  a handsome, happy three year old boy with many symptoms but no diagnosis. His Mom tells his story.


Our son, Benjamin was born full term in July of 2010, weighing a healthy 9 lbs and 1 oz. We were elated to have a boy to add to our growing family! I had my daughter by C-section two and a half years before, and I opted for a section again the second time around. 

When Benjamin was about two or three months of age, we noticed that he would favour his right side. He would always sleep that way, and he was starting to develop a flat head on one side. We were given a referral for Neurology to get fitted for a helmet to try and reshape his head. I had also been bringing him to physiotherapy because we thought he had a tight muscle in his neck. At five months old, he had yet to meet any of his milestones. We started to notice that he was sleeping a lot, and by a lot I mean most of the day. I knew that something was wrong, but I had no idea just how severe it was.

December of  2010 was a blur. I had taken Benjamin to our family doctor multiple times for some concerns I'd had about his sleepiness and lack of interest in feeding. Also, there were times when his hands would go from cold blue to fire red hot in a short amount of time. We went to Emergency, where the doctor ordered a CT scan. I could tell from the look in his eyes that something was wrong but he didn't want to say anything for certain without the final test results.

On December 22nd, Benjamin had his first 'episode'. He went limp and his head would bow forward. He did this multiple times repeatedly. I didn't know what it was, but I knew it was not normal infant behaviour. My husband and I rushed him back to the Janeway, where we were told that there was nothing that could be done that night, but to bring him back if it happened again. The next morning, Benjamin had another 'episode'. This time, I was going back with a purpose. Someone was going to tell me what was wrong with my baby.

While we sat in Emergency waiting to see the triage nurse, I noticed a small baby in a car seat looking at her sister across the room. That was when I broke into tears. It hit me that Benjamin was five months old and could not do that. He did not look at his sister from across the room. He was not aware in that way. 

When I handed him to the triage nurse, I was a mess and she knew it. I will never forget her face. I'm sure she has seen many sick children and their families, but I will never forget her. She took us out back to a part of the hospital I hadn't seen before, where they called for a medicine consult. Benjamin was hooked up to stat monitors and his vitals were all good, though he had four more 'episodes' that day. 

On Christmas Eve, Benjamin had his first EEG followed by an assessment with the Neurologist. I wasn't sure what to expect or how long it would take to get results. We sat across from two doctors and the nurse on charge that day. They proceeded to tell us that Benjamin was severely delayed and would "never be normal". They told us that the 'episodes' he was having were seizures, and that in addition to his delay, he has a rare type of Epilepsy called Infantile Spasms. I turned and buried my head into my husbands shoulder. I couldn't bring myself to look at these people or believe what they were telling us. All I could think was that my healthy baby boy, with a completely uneventful birth, would never grow up to have a family of his own.

We have had numerous tests since that day to try and determine a true diagnosis for Benjamin. We have also been to Sick Kids in Toronto for a second opinion with no further results. Benjamin has had two spinal taps, multiple MRI's, and muscle and skin biopsies, all without a conclusive diagnosis. His chromosomal analysis was normal. He has had numerous genes tested, which have all come back normal. We recently did a test of fifty potential genes for Infantile Spasms which came back inclusive. We truly aren't sure what is next on the list of tests. The best diagnosis we can get right now is "Global Delay". I call it the "we don't have a clue" diagnosis. 

Benjamin has had two steroid treatments to try and stop his seizures. The seizures are ever-changing as well. He has myoclonic jerks and focal seizures, and sometimes they come in clusters. We have tried the Ketogenic Diet, but he ended up in Emergency with pneumonia and his sugars were super high, so he was taken off that right away. I can't count the number of seizure drugs we have tried, and at three and a half years old, he still has seizures multiple times every day even while being on seizure medications.

Benjamin has also had numerous respiratory issues. In 2012, he underwent two different swallow tests and he aspirated on both. That Spring, we decided to go ahead and get his G-tube for feeding. Eating had become a chore. It was no longer enjoyable for him, and he wasn't thriving. I had been spending so much time sitting with him at the kitchen table and trying to get the proper nutrition into him. It was a long process. His G-tube has been a life saver. It really has increased his quality of life in the most positive way.

In December of 2012, Benjamin was placed on a respirator with another pneumonia infection. I was trying to get some sleep in the hospital when the Intensive Care doctor told me to call my husband. We didn't know how it was going to go for Benjamin. In a daze, my husband arrived at the PICU with our young daughter at 5:00am. We braced ourselves for the worst but Benjamin is a fighter. He spent three weeks in the PICU, but he made a full recovery.

There have been many ups and downs on our journey. We have had some really dark days when it is hard to believe that there is a light at the end of the tunnel. Thankfully, there are also some really great days where people rally around us and inspire us to keep fighting. Sometimes it is anything but easy to raise a child like Benjamin, but one look into his beautiful eyes melts my heart. 

I see my son as a "normal" little boy now. I tend to forget what normal development is until I am around other children. His sister has had to grow up quite quickly because of our frequent trips to the Janeway, but she is amazing with Benjamin.  She just sees him as her brother. Once, seeing a baby crawl, she said "Maybe we should teach Benjamin how to crawl", or she will ask why her friends at school think her brother is a baby. She is a wonderful big sister, very concerned and always looking out for him.

Benjamin is non-verbal and dependant on his wheelchair for mobility. We attend music therapy, which he enjoys thoroughly. I've seen such great strides in his development since being involved with music therapy. Even the littlest progress is the most amazing thing for a child with so many struggles. We have come to accept him for who he is and not what he will be. I keep saying, "He'll get there when he's ready!"

Why me? Why us? Why him? How many times have I asked myself those questions. I believe that he came to me for a reason. He gives me strength that I didn't know I had. Never an athlete, I ran my first half-marathon for Benjamin in 2013. Benjamin is such a wonderful teacher on the lessons of life. We try to live our life as normally as possible, when we are anything but a normal family. 

In the words of his sister, "I think everyone needs a Benjamin!!"

Diane, thank you for sharing Benjamin's story with us! I have to agree with his sister - I think that everyone needs a child like Benjamin in their life! I know that my own son, Brennen, has brought so much love into my family, and I can see that Benjamin has done the same for yours. It truly is a special gift that we have been given. Such special children that have taught us both so much about life and about what really is important.  

I love how you say that "Even the littlest progress is the most amazing thing for a child with so many struggles." I couldn't agree more! We have to celebrate every moment, every single teeny tiny achievement! I find it comforting to know that there are others who understand this. I am so glad to have connected with you! Much love to your family.


If you would like to be featured on Tulip Tales, please email me at:  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.


Friday, April 25, 2014

Rainbow Riders

I was asked recently to write a letter in support of Rainbow Riders and their Therapeutic Riding program. I was more than happy to do so, as we have had a wonderful experience with the program, and Brennen has benefited greatly from his involvement with the horses. I will take this opportunity to expand on my letter and share a little bit of how their riding program has impacted our family.

The mission of Rainbow Riders is "to offer year-round therapeutic horseback riding programs for children and youth with special physical, cognitive and emotional needs which are adapted to suit the unique needs of the participants."

My son, Brennen began participating in the Therapeutic Riding program at Rainbow Riders when he was just three years old. Brennen has a diagnosis of spastic tetraparetic cerebral palsy, and is dependent on a wheelchair for mobility. "Through therapeutic riding, horses help physically and mentally challenged children achieve things that may seem impossible."

Having a physical disability can put limits on what an individual is able to do, but a disability does not have to limit a person from riding horses. In fact, experiencing the motion of a horse can be very therapeutic. For individuals with impaired mobility, horseback riding gently and rhythmically moves their bodies in a manner similar to a human walking gait. Riders experience increased balance, coordination, greater strength and muscle control, and increased range of motion. The benefits are endless. A therapeutic riding program can contribute positively to the cognitive, physical, emotional and social well-being of people with disabilities.

For riders, like Brennen, who cannot walk, the horse is their feet. There is a strong sense of freedom and achievement that comes along with sitting upright on a horse and "walking". Just look at that face!!

Brennen has made measurable gains since he started with Rainbow Riders, and we attribute a lot of that to the quality of the program they offer. On warm sunny days, the horses often ride on a trail through the area surrounding the barn, taking in the beauty of the natural environment. Brennen is assisted by two side walkers who walk alongside the horse and help to hold him in a comfortable, supported position. There is also an experienced horse leader who guides the horse from the front.

While the many benefits to Brennen are obvious, there have been additional benefits to our family as a whole. Taking Brennen to his riding sessions is something that we look forward to each week. It is an activity that he thoroughly enjoys and we take so much delight in that. When you have a child with a disability, who will never walk, run, or play sports like hockey or soccer, it is nice to have him involved in a physical activity that is adapted to his level of ability.

Over the years, Brennen's accomplishments have been acknowledged with awards such as the "Free Spirit Award" in 2008, and the "Most Improved Rider Award" in 2010. Last year, Brennen underwent a medical procedure that made him unable to take part in the riding program. He had surgery on his hip, and was confined to a body cast for seven weeks. Though he was unable to ride, and unable to attend the awards show and dinner, we received a phone call on the night of the banquet telling us that Brennen was being honoured with the "Cup of Courage" - an award given to a rider who has shown great strength in overcoming obstacles or challenges. I cannot tell you how much it meant to me to know that they were thinking of Brennen and our family at that time, and were recognizing all that we had been through. It had been a very difficult Summer, and the concern and thoughtfulness shown to us by the wonderful volunteers at Rainbow Riders was extremely uplifting.  

The Therapeutic Riding program is run by volunteers. They are the lifeline of the organization. Participants succeed because of the time, energy and dedication shown by such an inspiring group of individuals. Brennen has created special bonds with some of his side walkers. He trusts them to keep him safe and we know that they are always looking out for him. They take pride in his accomplishments, just as we do, and they are there to help him progress.

I am truly grateful for the experiences we have had with Rainbow Riders. They offer a much-needed program that allows individuals with special needs to experience the rewarding benefits of horseback riding.

“In riding a horse, we borrow freedom” -Helen Thompson 

Saturday, April 19, 2014

The Magic Bean

The Magic Bean Toy Shoppe and Boutique is a locally owned children's store that specializes in high quality clothing and toys for a variety of ages.  They carry a range of specialty items, all of which are designed to be both educational and fun. Seriously, they carry the cutest things!  It is a great place to find the perfect gift, or just have fun shopping for your own kiddos.

Easter Seals NL, in partnership with The Magic Bean Toy Shoppe and Boutique, is hosting "Once Upon a Fashion Show", a children's fashion show at Husky Energy Easter Seals House on Saturday, May 3rd at 3:00 pm.

I am happy to promote an event that includes all of our children. The staff at The Magic Bean recognize that every child is unique and special, and they want to celebrate that fact!  I love that they are taking steps towards building an inclusive community!  Children of all abilities will be strutting their stuff down the runway in a range of designer clothing, and the event is open to anyone and everyone!

Here is Brennen, optimistic and ready for Summer in his stylin' shorts and t-shirt by Deux par Deux. He is also sporting a new pair of Tiny TOMS.  The Magic Bean has a huge selection!

Would you like your little one to be a prince or princess for a day? You and your child will receive the royal treatment with professionally prepared hors d'oeuvres and refreshments, mini-manicures, glitter tattoos and hair styling, photo booth fun, loot bags, prize giveaways, a silent auction for kids and adults, and a Melissa & Doug door prize valued at $200. Lots of fun for girls and boys alike!

Whether you are part of Easter Seals or not. Whether your child has a disability or not. Come out and enjoy a fun afternoon in support of a great cause!  Challenge yourself to think differently.  Celebrate children and the things that make each of them unique!

Tickets are $25 each and all proceeds go to Easter Seals NL.
Tickets are available at The Magic Bean (284 Water Street or 333 Freshwater Road ) or Easter Seals House (206 Mt. Scio Road).

Easter Seals is committed to celebrating the uniqueness of every child, and for that I join hundreds of other families in saying.. thank you!

Saturday, April 12, 2014

Tulip Tales: Gage

I am honoured to share with you the journey of this incredible little boy.  Gage was a miracle baby.  He has stolen my heart and he is bound to touch yours!  His parents tell his story.


At 7:59 PM on Dec. 15, 2010, Gage came into the world weighing 1 lb 5.5 oz and measuring just 12 inches from the top of his head to the tips of his toes. It had been a normal pregnancy up to that point, and no one knows why he came at 24 weeks. That is perhaps the hardest part of accepting and processing the last 3 years - we have no answers, and it has closed the book for us in terms of expanding our family. We will not be risking what happened to Gage to try for one more child.
His mum hadn’t been feeling well on the evening of December 14, and when she went to the bathroom around 8:00 that night, the world seemed to stop as she saw bright red blood. Panic ensued.

He can’t come now! He won’t survive!

We contacted our doula (who is now Gage’s Goddess Mama and a very dear friend of ours) who met us at our house and accompanied us to Emergency. She was our lifeline - she kept us sane and knew what questions to ask, what to tell the nurses. Once we called up to the case room and began the process of being examined in triage, we were told that we would likely not be going home that night. The news hurt - we had really believed (hoped) that it was something minor - it had to be something minor - that things would be patched up, perhaps an antibiotic given and we would be on our merry way. That was not to be. They administered steroids to try to strengthen his tiny lungs and began a regimen of Adalat XL, Morphine and Gravol to try to stop the contractions that had begun to build while we were in triage. His mum didn’t realize what was happening until the tightness in her back turned to pain that began to recur every two minutes. She was put into a hospital bed, head tipped down, legs in the air and was forbidden from standing or walking.

2 weeks they said - maximum. That’s the most time we could hope for, if we were able to stave off labour at all. We were given all the statistics: heart problems, lung problems, CP, Autism, a very broad spectrum of mental and physical delays. 50% chance of death. His life literally hung in the balance. But 50% was 50% - we had to try. We had to hope.

After her catheter had been placed the next day, his mum began to feel as if his feet were ‘hanging out’, but since internal examination is avoided as much as possible when there has been a premature rupture of membranes, there wasn’t much anyone could do except hold on and hope that the ultrasound we were scheduled for at 4:00 PM would show that Gage was ok. As the nurse completed the sonogram, she told us his fluid levels were normal, but that the doctor was going to have a look to see where the placenta was lying. As the doctor smiled and explained who she was and what she was about to do, we saw her squinting at the screen.

“... they talked to you about having a classical section and the reasons for that, right?

We nodded and told her we’d been informed that he would be born via classical C section in a high risk theatre with the NICU team ready and waiting to take him to resuscitation. (...if he could be resuscitated.)

“Good, because, my love, his feet are in the birth canal. You’re having him right now.

Relief turned first to horror, then to anticipatory grief. Life as we knew it was about to change forever.

Back in the case room, the nurse began to fill out pre-operative forms in preparation for the coming section.

Does he have a name yet?”

His mum didn’t want to say it out loud. It made it too real, too deep. So his dad told the nurses for her.

“Gage. Gage Derek.

That’s a good strong name,” said the nurse. “He’ll need it.

As we waited for the surgery, phone calls were made, prayers were said and all thoughts of the fact that his baby furniture had just arrived in the post that same day were set on the back burner. No one knew how this was going to go, so it was pointless to speculate - we just had to keep truckin’ and face whatever was coming.

He’s crying! He’s trying to cry!!”

Those were the most important words spoken in that operating theatre. We didn’t get to see him, but we heard the jubilant shouts of the nurse who was running with him to resuscitation. He had cried. His chances of survival had just grown by a millimetre.

After 2 1/2 hours, we were allowed to meet him. The first time we saw him was terrifying. His skin was translucent, dark red and very waxy in appearance. One of his eyes was completely fused shut like a puppy’s, the other only partially open. He was covered in dark hair. His legs were bruised black. We couldn’t see his face because it was covered from the forehead down by the tiniest hat they could find (which was still miles too big for him), tapes, and the breathing tube they had to try to insert 3 times because he was fighting everyone and refused to cooperate. (He’s 3 now and he still refuses to cooperate. His stubbornness is why he is still with us. We hope he never loses that determination.)

He didn’t look like a baby at all. We both started to cry.

The next 5 and 1/2 months were hell. We didn’t want anyone to know he was born at first - what if he died? How would we face everyone then? We avoided people who weren’t close family and who weren’t on the ‘need to know’ basis. We avoided places where there were likely to be pregnant women. That part of us was lost and it was something we would never get back. We would never get to experience it with another child, and his mum began to blame herself in the absence of an explanation for what had happened. We drifted. Neither of us slept. The phone became a scorpion, ready to strike at any moment with bad news.

By the time Gage was 5 months old, he had already developed:

- metastatic bone disease, resulting in brittle bones and a rib fracture that went undetected until we found the healing lines in an x-ray done close to his discharge date. No record of the actual break could be found when doctors pored over every single x- ray he had done to try to find the date of injury - he’d just been too small for it to show on film. It is now thought that this was the reason for his prolonged need for high levels of oxygen - he couldn’t take a deep breath, and as a result, his lung function dropped.

- chronic lung disease. He was ventilated for 9 weeks and 2 days. 6 of those was spent on the oscillator. He would spend an addition 5 months on oxygen at home. We are very happy to say that aside from what appears to be slightly reactive airways requiring inhalers only when he gets a cold, he seems to have outgrown this completely.

- pulmonary hypertension, including an atrial septal defect (which is a hole in the wall between the top two chambers of his heart). The hole in his heart has since healed on its own and he no longer requires medication as his heart/lung condition has been completely reversed.

- retinopathy (for which he received laser surgery)

- a hernia in his left groin (which has since been surgically corrected twice)

- a left intraventricular hemorrhage in his brain which would result in his diagnosis of CP at the age of 16 months.

- a large chemical burn on his back from the chlorhexadine used in the section. It pooled under him when he was in the plastic baggie shortly after birth as he waited for his isolette to warm up. (We didn’t learn of this burn for 6 days.)

- various scars on his chest, legs and arms from electrodes, tape and self-adhesive dressings.

By the time he got home, he had run into many feeding issues. It took him 3 hours per bottle, 5 bottles a day. To this day, we do not know why he refused to eat. He rejected the breast after 8 weeks while still in hospital (despite a good latch and suck/swallow) and he eventually rejected the bottle as well. We ended up feeding him with a syringe for 8 months.

All of the above are run of the mill, every day occurrences in the life of a micro prem. We were told to expect illness at least twice a month while he was in hospital. We were told there would be massive ups and downs. Was it a roller coaster? Yeah. But was it as bad as it could have been? Looking back and remembering the rows upon rows of plaques that lined the corridors, we can say absolutely not. Our dream of a natural birth was taken from us. Hopes for a ‘normal’ child as well as a sibling for him were dashed. But while these are all legitimate forms of loss that we both struggle with even now, 3 years later, hindsight has helped us to heal from some of the trauma of his arrival. He never crashed. He never got any major infections. He never had major surgery. He only had 1 set of positive blood cultures during his entire stay at the NICU. It was slow going, but slow does not mean stopped. He wasn’t sick - he was just small. Looking at him now, we are able to appreciate that concept in its entirety.

Every milestone is reached in his own unique way; some he struggles with, others he achieves with ease. There is no book to follow with Gage (or any micro prem), so we threw them all out and let him teach us what we needed to know. There has been much to be thankful for in his short life and we take every opportunity we can to celebrate it - including his birthday (December 15), his due date (April 4), and his “gotchya” day - the day he came home for good (June 2, 2011). We’ve learned more from him about love and what it means to live in the moment, how to let go of the bad and focus on protecting the people we love and the time we are given with them than we could from any adult. The love of one tiny, 610 gram boy brought together an entire family of four generations spread all over the world. That is a miracle. He is the meaning of the word ‘hope’.

His therapists say they are very hopeful he will walk - he is inches away from doing it on his own. He wears leg splints, but he will not require a walker long term. He babbles and tries new sounds every day. We are very optimistic that he will have some level of speech. He can see. He can hear. He can give hugs and kisses.

If he never wins the lottery, if he never gets a medal, if he never earns an A in English, those things are all small potatoes in the grand scheme of things. Gage has already shown us what he’s made of - he’s still here. 


This 'Tulip Tale' is one that is very dear to my heart. Gage is one of the children in my care at Little Tulips, and it is a privilege to spend my days with him and to watch him grow.

Megan and Jerry, thank you both for opening your hearts and sharing Gage's story. He is a remarkable little boy with more determination than I think I've ever seen in a child. He is vocal and enthusiastic, confident and adventurous. Gage works so hard and he has come so far. We are incredibly proud of him, and so thankful to have him in our group.  Thank you for letting us be a part of his journey!


If you would like to be featured on Tulip Tales, please email me at:  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.


Wednesday, April 9, 2014

Spring, wherefore art thou?

Just a little update on what's been going on here lately.

We have been trying some alternative therapies with Brennen. I don't believe that medication is always the answer. If it is, great. If not.. try something else! I am open to many options and alternatives. Having worked with a Homeopathic doctor back in my university days, I have witnessed the healing that can take place with a natural approach, and I would much prefer that to heavy, sedative drugs and the side effects that can come along with them. Brennen has been doing well. He still has his moments of getting upset (like I talked about here), but dare I say he seems to be coming around? We will continue on the path that we are going, and I will keep you posted on his progress!

We are anxiously waiting for Spring to arrive! Though the calendar says it began three weeks ago and the hour has sprung forward, we still have 40 cm of snow on the ground. Our poor bodies haven't seen the sunshine in months, and have been buried under thermal layers and bulky Winter coats. We still can't leave the house without boots and mitts, and it just feels like this Winter is dragging on f-o-r-e-v-e-r.

I am aching to get outside, to see green grass and flowers and leaves on trees. I want to plant something!  Have an outdoor barbeque! I am dying to wear a t-shirt! (I would even settle for a long-sleeve at this point!)  I am ready to trade the snow blower for the lawn mower, and to smell the rich scent of freshly cut grass. I want to bust out the pastels, people!

We had a beautiful patio built at the end of last year, to complete our newly landscaped and fully fenced yard, but we haven't seen it since November! I have big plans for that yard! There are planter boxes that will be overflowing with tulips and tons of space for the children to play. We have a new swing that needs to be installed and we have lawn furniture. LAWN furniture!!

I am even looking forward to Spring cleaning. I am typically a very tidy and organized person, but right now our kitchen counter looks like a garage sale. Seriously. From where I am sitting, I can see some tea-light candle holders, an over-ripe banana, an empty cupcake box, papers piled up from tax preparation, a roll of masking tape, and a t-shirt. 

Spring, wherefore art thou? Today, while my mind is on decorating Easter baskets and dying eggs, there is a "Weather Warning" in effect for heavy rain, winds and freezing rain.  Haven't we had enough?  I just want to put on my sneakers and run again on my favourite trails.  I want to take Brennen to the park and stroll along the quiet streets. We haven't been able to do that all Winter. The roads are not friendly to wheelchairs and the sidewalks are non-existent.

Spring will be here soon, but for now, we will keep our warm socks on and our quilts close-by, while we dream of blue skies and warm ocean breezes.

* Thank you to Nicole for these beautiful pictures of my boy!

In other news, Little Tulips is celebrating it's first anniversary!  You can read about that here.

I have received lots of beautiful comments and entries for my Mother's Day Contest!  Thank you so much!  Please continue to send them in, if you haven't already.  The contest is open until the beginning of May.

And finally, I am very excited about the upcoming release of this new documentary!  American Blogger was created and directed by Christpher Wiegand, the husband of Casey Leigh, who's incredible blog I have been following for quite some time.  In this film, Chris travels across the United States connecting with and interviewing a range of bloggers who open up about community, about sharing, and about life.

Bloggers are real people with real lives and jobs and families. Blogging is an incredible way to share your thoughts and to get your story out there. It is a modern form of expression, and one that I have embraced whole-heartedly!

"This documentary will remind you of the value of your voice and the power of sharing your story."

American Blogger Official Trailer from Chris Wiegand on Vimeo.

Just to be clear, I have nothing to do with this film, other than being very excited to see it. However, if anyone wants to create a 'Canadian Blogger' version.. get at me!  ;)

-Julie xo

Saturday, April 5, 2014

The Overcast

St. John's has a new art-focused monthly newspaper called The Overcast.
"Every capital city in Canada has an alternative paper that covers the culture of its province, but few provinces have the thriving arts scene, vibrant people, and paper-worthy stories that our province has to offer. Newfoundland’s culture needs a voice, and The Overcast aims to be this voice, from coverage on local artists and entrepreneurs, to our growing food, retail, and academic culture. In addition to the ten sections of the monthly paper, posts fresh and exclusive content on weekdays."

I met up with journalist Seamus Heffernan recently at a local coffee shop, and we had a discussion about my blog and talked a lot about my 'Tulip Tales' series. We sat too close to the blenders, so we could barely hear each other.. but other than that, the interview went great!

This month, my blog is featured in their "People" section (page 30)!

'Tulip Tales' is my baby, and it has taken on a life of it's own!  (I guess that's what babies do, I just wasn't expecting it to happen so quickly!)
I am thrilled that it has gathered so much recognition, but I am even more thrilled to be able to share the stories of such amazing children and families. Each story is inspiring. Each child is remarkable. These families all have one thing in common - the situations, conditions, illnesses may be different, but the love is the same and it is always there.

"Being the parent of a special needs child changes your life profoundly and immediately, and knowing you're not alone in the experience is a very real comfort."

I am happy to be able to provide parents with a place to know that they are not alone. In a world where we can often feel isolated, here, parents of children with special needs can come together and share their commonalities, while at the same time, we are awakening others to new and different ways of thinking about things.

Thank you again for reading, for supporting, and for sharing your stories. I admire all of you and I am so happy we are in this together.

Next time you are out and about, pick up a copy of The Overcast at any of THESE locations!

To view an electronic version of the April 2014 issue, click the link below:

-Julie xo

Tuesday, April 1, 2014

Tulip Tales: Nevaeh

My plan for this Tulip Tales series initially was to feature one child each month, but I just can't wait that long! I am excited to share these touching stories, and so I will post them as I get them. Each of these children are remarkable and their stories need to be told.

That being said, I was so happy to hear from Holly, the mother of a beautiful little girl named Nevaeh (that's heaven spelled backwards). Holly told me that her daughter had an amazing story to tell, and she wasn't kidding! I am so glad that she reached out, and I am honoured to be able to share her journey with you.


In March of 2009, my fiancee passed away after a courageous battle with Cancer.
Joey fought with everything he had. Right up until the end, he had wanted us to lead a normal life, and we'd tried our best.

In December of 2008, I was driving to the Village Mall to do some Christmas shopping when my phone rang, and I knew right away it was the hospital. It was one of the nurses from the Cancer clinic saying she had to ask me a personal question. She asked me if I was on birth control, and she said that because of the new treatments they were going to start Joey on, it was recommended that I NOT get pregnant, because they didn't know what the side effects might be. I remember pulling over and breaking down crying. I wasn't on birth control. We had been trying for 13 months to have a baby, and now she was telling me that we never could. It was devastating.

On December 10th, just days after my 25th birthday, I decided to buy a pregnancy test anyway, though I was certain it was going to be negative, just like the rest. Nope, it was positive! Follow-up tests determined that I was seven weeks along. I had gotten pregnant before doctors told me I wasn't allowed to. So.. now what? 

The doctors were baffled and uncertain, so they sent me to IWK in Halifax to have a chorionic villous sample taken. A CVS is a form of prenatal diagnosis where they examine a piece of the placenta. They check the DNA to detect any chromosomal or genetic disorders in the fetus. It was scary. Chemotherapy drugs could have made my baby blind, deaf, deformed, or have any number of syndromes. They just didn't know.

Nine days later, I was doing dishes at home when the phone rang. It was the IWK, saying that our tests were back and things looked perfect! At thirteen weeks, I was told we were having a healthy baby girl! We were ecstatic!

However, our excitement was short lived. Joey's health went downhill, and on March 5th of 2009, he lost his battle with Cancer. I was 20 weeks pregnant. 

Fast forward to July 27th, 2009. On a bright sunny morning, weighing 7 lbs 1 oz., Nevaeh Joey Denine came screaming into the world at 8:53am. It was a bittersweet moment for our whole family. We had a little piece of Joey with us, and we couldn't wait to tell her all about what an amazing man her Dad had been.

At 22 months old, Nevaeh was a beautiful, healthy, blue-eyed, strawberry blond little girl. She did get frequent urinary tract infections, but I knew they were fairly common in children, so I wasn't overly concerned. We went for a routine ultrasound to check for kidney reflux, and I will never forget the radiologist singing this 'kitty' song over and over again as she took the pictures. It haunts me to this day. She turned the lights on and said "Ok Mom, I have to get the head radiologist to look, but I think your daughter has Cancer." Nevaeh's grandmother broke down. I just nodded and said "Ok, I can do this."  That's all I remember besides calling my family to come out. I was numb. I wouldn't respond to the doctors, I just laid on the couch and looked at the ceiling. 

We were admitted right away. She had bone scans, CT scans, bone marrow biopsies, blood work, among other testing. I think that was the hardest.. waiting for results. One scan took an hour, so we had to put her to sleep, and I just sat at the side of the machine crying and praying.

We discovered that Nevaeh had Stage 1 Neuroblastoma over her right kidney. 

Surgery was scheduled for the following week. I just wanted this monster out of my daughter's body. They removed the tumor (about 2 cm by 2 cm), and her right adrenal gland. She did great! She was a very lucky little girl, and we were so thankful. We had to come back for follow-up tests and ultrasounds every six months.  For me, those were the scariest days of my life, for Nevaeh they were just check-ups and a couple of nice stickers!
Nevaeh grew to be, and still is an amazing child, with an infectious laugh and a deep love of all animals. She has an incredible spirit, and that is what has kept us going.

In November 2013, over two and a half years after her scare with Cancer, I came home from work to find that Nevaeh had a black eye. No one knew what happened, not her daycare, family or friends. It was a little concerning, but kids will be kids, we thought.

A week later, I took her to our family doctor, but she wasn't concerned.  It was only a black eye, and there didn't appear to be any other damage. By December, she'd had a black eye for a month, and I knew that was not normal. I was beyond frustrated. After taking her to the family doctor and the ER twice with no success, I'd had enough. I wanted answers, so I turned around in the middle of the road on my way to work and picked her back up from daycare, put her jacket back on and went out the door. I needed an explanation. I knew deep down something was wrong. 

On December 20th, 2013 (Joey's birthday), Nevaeh had a full body MRI. I knew it was bad, I just knew. On December 23, I found out that I was right. Her Cancer was back, and with a vengeance, almost everywhere in her little body, except for her organs and brain. We were in for the fight of our lives, and we had all intentions of fighting as hard as we could. I decided not to tell our family until after the new year. I had no idea what next Christmas would bring and I wanted this one to be as normal as possible for her.

After bone scans, MRI, CT Scan and travelling to Halifax for a MIBG scan, we knew what monster we were facing. Neuroblastoma.  But Neuroblastoma didn't know who it was facing - a fighter named Nevaeh!

She started chemotherapy in January of this year, and so far she is responding well. We went to Toronto Sick Kids in March, where Nevaeh had a stem cell harvest. It's almost like a dialysis machine, it takes your blood and skims the stem cells off. All cells in your blood weigh differently - plasma, platelets, stem cells, white blood cells. It is amazing what technology can do. For two days, Nevaeh had to be hooked up to the machine for 6 hours to retrieve stem cells, one bag for her transplant in June and two more "spares". The photo of her with the guitar is while doing the stem cell extraction. 

We will return to Sick Kids in June for seven weeks. Nevaeh will have a very strong dose of chemo at that time, and they will transfuse the stem cells back into her body. We found out last week that the cells are 100% Neuroblastoma free after her first two rounds of treatment!!! It is a hard road to recovery but we can do it. When we come home, she will start radiation, have surgery if necessary and then start an immune therapy drug. Nevaeh is on her way down the road to wellness. We are far from out of the woods but she is a fighter. She likes to say "Let's go kick Cancer's butt, Mom!"

Nevaeh still participates in her regular activities. She attends Kinder Start, goes to play groups and has attended 'Shave for the Brave', winter carnivals, and other social events to help other kids learn about her condition. Our goal when she is finished is to raise awareness and money for Neuroblastoma research. We want to pay it forward in some way. Our community has been such an overwhelming support to us, and we want to give back. Nevaeh's journey won't end when she finishes treatments. She will have scans and tests for the rest of her life.

Every time someone asks how I am, I can only say "If she has a good day, so do I".
Nevaeh is my hero, and I am blessed to have her in my life.

In her own words:
When asked how she feels about having Cancer, Nevaeh said "I'm happy because I feel a lot better and can climb and walk again." (Nevaeh had developed a limp and bone pain before starting treatment, that has since resolved). She said, "I'm happy my eye is better, and I like having no hair, because I don't have to get tangles brushed out. I'm special like little girls and boys like me 'cause people know we are heroes when they see us with no hair."
I read this part back to her and she said. "Mom, write also that I'm happy to be me!"


Thank you, Holly (and Nevaeh!). Most of us cannot imagine our child going through so much at such a tender age, and to see the photos of Nevaeh with that big smile on her face fills me with awe and admiration. The one thing I hope to accomplish with these stories is that people will see the love and support that surrounds these children. I hope that in visiting my blog, people will begin to think of children with special needs and medical issues as they think of their own children.. with love and compassion and understanding. I am grateful that you chose to share your amazing daughter with us! I wish her all the best with her upcoming treatments, and I hope for a big, beautiful life for her!

You can follow Nevaeh's journey on her facebook page here - Happiness for Nevaeh
and support Nevaeh's Lemonade Stand here -

If you would like to be featured on Tulip Tales, please email me at:  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.