Tuesday, July 29, 2014

Alyssa MacLeod: The Power of Perseverance

I met Alyssa MacLeod last May at the CP Canada Network meeting in Halifax, NS. At that time, Alyssa was Miss Nova Scotia Canada, and we were excited to meet with her and talk about her being our World CP Day Ambassador. Shortly after the conference, (like literally just a few days later), Alyssa was crowned Miss Canada International 2014!

Since then, Alyssa has been busy traveling the country, visiting towns and cities and promoting her personal platform, "The Power of Perseverance". Her year-long reign will take her to communities all across Canada, inspiring youth and people with disabilities.


About Alyssa:
I was born with a mild case of Cerebral Palsy (a term used to describe damage to the motor areas of the brain that can cause difficulties in gaining balance for walking and difficulties in education). As a result, I have had a number of surgeries at the Shriners Hospital for Children in Montreal, where I was a patient from the age of 2-21. In May 2013, I was named the Shriners Hospital for Children Atlantic Canada Ambassador. As Ambassador I have gained significant experience giving speeches and media interviews on my experience as a patient, surgeries I have had as well as the work SHC-Canada does.

My Parents and younger sister, (Cally) have been an incredible support throughout my life and medical obstacles, always encouraging me to not let my disability get in the way of being successful and becoming the best person I can be.

The obstacles I have had to overcome have taught me a lot about focus and determination. I am absolutely determined to become a doctor and join the incredible team at Shriner’s Hospital for Children-Canada.

I am excited to write that I was recently accepted into Medical School, the first step in realizing my dream.

ALYSSA’S  Personal Platform

The Power of Perseverance - Encouraging Children with Disabilities to Reach their Dreams.

I am honored to have been chosen as “Miss Canada International 2014”. As a young woman with a disability, I believe it is important for these young woman as well as the public to realize that people with disabilities have the same feelings and goals as everyone else. They should not be treated differently or feel ashamed of themselves. They have the same rights and should be given the same opportunities as others, regardless of the nature of their disability. They are an asset to the community and can contribute as much as anyone else. They should value and be proud of their uniqueness.

As “Miss Canada International”, it is my goal to bring awareness to this unique group of individuals and show that they can be very proud of who they are. As someone who has a disability and someone who has witnessed the way society reacts towards these individuals, I will strive to bring a better understanding to what having a disability means and close the gap society has created. Having a disability means you may need to find alternative ways of doing things, an activity may take you longer than others but that does not mean it is impossible.

As a former patient and Ambassador of Shriners Hospital for Children in Montreal, I have been faced with obstacles and surgeries. I have been told that I could not be successful in my endeavors. On numerous occasions people have told me that I could not do something. I took this as a challenge to prove that I can do whatever I set my mind to. I turned the “I can'ts into “I cans”.
There is Power in Perseverance. People with disabilities do not give up easily. They must work harder to prove they can accomplish something. It is my intent to show, to encourage and to be an example that people with disabilities can accomplish their goals and be successful in life.

Disabilities are very often looked at as a hindrance, but I am an example that if you accept your disability with a positive mindset, you can reach any goal you strive for. A disability is only a disability if you let it become one.

I am proud of our Country of Canada and to be an advocate for those with disabilities.

A disability doesn’t define you, you define a disability.

Alyssa MacLeod
Miss Canada International 2014
"Canada’s Inspirational Young Woman"

You can follow Alyssa's tour across the country on twitter @misscanadaintl

and on Facebook : https://www.facebook.com/MissCanadaInternational

She has been to five different provinces in the past two months, and is heading for the United States next week.

Alyssa, you are an exceptional young lady, and an inspiration to all who meet you, myself included!

Sunday, July 27, 2014

Tulip Tales: Landon

Every day that I post a new 'Tulip Tale' is an exciting day for me. I love being able to share these amazing stories of such beautiful and inspiring children. This really is my favourite part of my blog. Each child is unique and each story is powerful. They all touch my heart and make me think about life in different ways.

Today, I introduce you to Landon. His mother, Michelle shares his story.


Landon was born on June 4, 2009 - a beautiful baby boy, of 8 pounds 14.5 ounces. He was a bruiser to say the least, and I instantly fell in love with him. Though I didn’t know it at the time, my precious little boy was going to teach me the true meaning of strength and love.
Landon was a perfectly healthy baby and reached all of his milestones on time. Looking back now, I can see that there was always some weakness in his legs, but I didn’t realize it at the time. I have an older son, Logan, and I just thought “all babies are different, I cannot compare him to his brother”.

When he was about two and a half years old, the girls at Landon's daycare noticed that his walking was a little different and they brought it to my attention. I made an appointment with a pediatrician at the Carbonear General Hospital, where we were told that Landon had low muscle tone. This was in March of 2012.
By late August of that year, when Landon was just three years old, I knew there was something more going on with him. We took Landon to our family doctor, who confirmed our suspicions. He referred him to a Pediatric Orthopedic Surgeon, who told us that there was nothing wrong from an orthopedic point of view.
Our next step was to see another pediatric specialist in October, 2012. This doctor told us he believed there was something neurological going on with Landon, and referred us to the rehabilitation team at the Janeway Children's Hospital in St. John's.

We first met with the Rehab team in January of 2013. Landon saw all the members of the team: a physiotherapist, an occupational therapist, a speech therapist, a nurse, social worker, and finally a neurologist. The neurologist thought that Landon had a form of Spastic Paraplegia, but testing would have to be done to confirm this. We then set up an appointment with genetics to hopefully get an answer to the cause of Landon’s difficulties. It would be over a year before we would get our official diagnosis.
In the time we were waiting, we visited the Janeway for regular physiotherapy, occupational therapy, and speech therapy appointments, and we would go through the Cerebral Palsy Clinic every six months. We tried to live life as normally as possible, but it was a very difficult time for our family. We knew something was happening to our child, but we didn't know what it was. Moreover, we could see that his walking was deteriorating, and not having any answers was extremely stressful. I spent a lot of time researching Spastic Paraplegia. The stress of waiting for answers was really taking a toll on myself and my family.

Then came the diagnosis. On April 25, 2014, our genetic results were in. I immediately had a gut feeling that something was terribly wrong. They asked us question after question. Questions about his vision. Questions about his swallowing. Was he slow? Did he show any signs of dystonia? It got so overwhelming that I finally just had to tell the geneticist to tell me what they found. I couldn’t take any more questions because she was scaring me and I knew something was wrong.
Landon was diagnosed with FAHN or Fatty Acid Hydroxylase-Associated Neurodegeneration. This disorder is a sub-classification within a family of rare genetic neurological disorders called NBIA, or Neurdegeneration with Brain Iron Accumulation.

Landon’s condition affects the central nervous system by degenerating the myelin (white matter) in the brain and spinal cord over time, causing electrical impulses in the body to slow, leading to decreased motor and brain function.

This disorder is extremely rare. There are less than 30 cases known worldwide, and Landon is the only confirmed case in Canada.
As the doctor was explaining all of this to me, I cried and cried. I was in total disbelief. The only way I can describe that moment in time is exactly like what you see in the movies: when you receive bad news and everything around you becomes a blur. I just stared at them blankly. I had to force myself to come back to reality over and over again to try to pay attention to what the doctor was saying.
My biggest fear had come true: my child was diagnosed with something horrible. A progressive neurological condition. A condition for which there is no cure and no known treatment.

The first couple of weeks after the diagnosis were very hard. We spent a lot of time in disbelief, shock, and despair. We prayed every night and every morning (and still do) for God not to take the light away from our child, but we have two children and had to get out of bed and keep going for both of them. In fact, the morning after the diagnosis, I got up and took the kids swimming. That was the moment I decided that no matter what, I had to keep pushing forward and make life as 'normal' as possible for my family. My husband, Lee and I were very determined and decided early on that we wanted to find others with FAHN and do everything we could to turn this horrible nightmare into something good and God willing, do something to help our little boy.
Since receiving the diagnosis, our family has seen its share of stress and there have been some very difficult moments, but we choose to focus our frustrations into something positive. We are trying to make a difference by fundraising. I get asked all the time “What is your goal?” My response is that I don’t have a monetary goal in mind; I just want to find a cure.
Our fundraising started with Landon’s medical expenses and will soon shift to funding research to find a cure. I have created a board of directors, consisting of friends, family and colleagues. We are working on starting a non-profit organization in Newfoundland and we have some very exciting things coming up in the near future.
We have connected with several other NBIA families. We support each other and that has been a Godsend.

At this time, Landon is experiencing great difficulty with his walking and can no longer walk unassisted. Landon also has speech issues, but speech therapy is helping. We have no way of knowing when or if his disorder will progress, or if new symptoms will arise. 

There are questions surrounding his life expectancy. One study from the University of Washington says the lifespan of someone with FAHN can be in their early 20s to 30s, but with limited cases to study and so little known about the disorder, we are really unsure. We take life one day at a time, and one obstacle at a time. We are proactive and hope to do whatever we can to further research. More importantly, we enjoy every moment together. Our hope is very much alive and we pray every day that a cure becomes available!
What I want people to know is that we are a normal family living with extra-ordinary circumstances. We camp, we fish, we ride bikes, we swim, we go to the movies, we have dinner together, etc. We have to constantly look for ways to accommodate Landon’s limited mobility, but there is not much that we don't do together as a family. Recently, we attended our first Easter Seals Family Camp for children with disabilities, and it was a wonderful experience!

Thank you, Michelle, for sharing Landon's story. I can only imagine how difficult it must be dealing with such a rare condition and not knowing what the future might hold for your family. I love that you are being proactive and enjoying life one day at a time. That is all any of us can do, really. I am so glad that you have been able to connect with other families, and I hope that you know you are not alone in this fight. Parents of children with special needs share many of the same challenges and worries. We need to support each other and make the most of life, despite the difficult circumstances.

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.


Thursday, July 24, 2014

Drop Zone

Last night, we attended a concert fundraiser for Easter Seals Drop Zone.

Drop Zone is an insanely exciting and terrifying event in which participants willingly rappel 150 feet down the side of Atlantic Place. Crazy.

Participants are required to raise $1000 in pledges while challenging their comfort zone, all for a great cause. All money raised supports Easter Seals' life-changing programs and services for children, youth and families living with disability in Newfoundland and Labrador.

Because I am a huge chicken and would never have the courage to do this myself, I am happy to support the cause by donating to those who are much braver than I.

Easter Seals volunteers and camp counselors, Erin and Travis organized a concert fundraiser with some amazing talent. Performers included Megan Glover, Abby Quigley, Chelsea Parsons, Naaman Barbour, Everglow, ESS, Justin Upshall, Travis Pickett and Séan McCann.

Megan Glover - 2014 Easter Seals Ambassador 

 Abby Quigley


 Séan McCann of Great Big Sea

Brennen, Andrew and I were very excited to meet Séan and to see him perform. As someone said last night, "He gets it". He knew why we were all there, and he wanted to be a part of it. He made a connection with our kids, and he involved them in his music. It was very moving, very emotional, and very much appreciated. Séan is actually doing the Drop Zone himself, and will be (as he says) "Falling off Atlantic Place" for a good cause. He is a brave soul, and should be commended for that! Thank you, Séan, for all of your support and involvement with Easter Seals. Thank you for helping to enrich the lives of our children. Thank you for getting it.

Watch this video of Séan and Carly singing the most beautiful version of 'You Are My Sunshine' that I've ever heard.

And here, Séan sings 'Imagine', with Josh rocking it out from the audience! Amazing!

"You may say I'm a dreamer, but I'm not the only one.
I hope someday you'll join us. And the world will live as one."

Check out Séan's new solo album here - http://www.seanmccannsings.com

 And donate to Easter Seals Drop Zone HERE.

Tuesday, July 22, 2014



You guys, I am so excited about this!

Yippee! Sheets are a new line of Canadian-made, stylish waterproof protection designed specifically for toilet training and bed-wetting.

Creator Nicole Maunder (sister of local film-maker Roger Maunder) is originally from St. John's, but now lives in Toronto with her two young boys. Nicole created her newly-launched line of sheet protectors after dealing with several "accidents" when toilet training her sons. Recalling how frustrating it was to wake up in the middle of the night and have to change all the bedding, she thought that there had to be a faster and easier way.

Cleaning up messes is an inevitable part of life as a parent, and may be even more-so for parents of children with special needs. Bed-wetting is a frustrating, yet extremely common problem for our little ones. For many, the issue continues into adulthood, making life very stressful for parents and caregivers.

I was excited to hear about this new line of Yippee! Sheets, and was anxious to try one on Brennen's bed. I love that unlike most sheet protectors on the market, the Yippee! Sheet is soft and cozy and goes on top of the bottom sheet, not under it, which means it is the only thing that needs to be washed!  If there is a leak or accident, simply pull it off the bed, throw it in the washer and reuse it over and over!

Another feature of the Yippee! Sheet is that it is silent! The bottom layer is waterproof, but not made of vinyl or PVC, which means that it doesn't make that noisy crinkling sound, making for a healthier, more restful sleep.

As parents of children with special needs would agree, our time is already stretched to the max, and every minute is valuable. Anything that can help decrease the amount of laundry and minimize our level of frustration is a win-win! In the short time that we've been using the Yippee! Sheets, it's been a huge time-saver and stress-reducer. I highly recommend them to anyone dealing with nighttime messes.

We have the green and white "Waterproof One-Size Bed Sheet Protector without Tuck-In Flaps". It's also available with tuck-in flaps, for people who move around a lot while sleeping. (It's hilarious how excited I am about this!!) These sheets are beautifully made with great attention to detail and a range of colours and patterns to choose from.

Check their website for the full line of waterproof products, including bed sheet protectors, and car seat, stroller and chair protectors, which would work great on wheelchairs as well!

Thanks, Nicole. You are one smart Mom!!

Check out this video to see how easy they are to use, and visit www.yippeesheets.com to view and purchase.

Sunday, July 20, 2014


Last week, I received a letter in my Inbox from McMaster University that read:

"Please find attached a letter inviting you to be part of a new 'F-words' in Childhood Disability Research Team (a collaborative team composed of researchers and families) at CanChild Centre for Childhood Disability Research."

The letter stated, "I found your website 'Tiptoeing Through' a few weeks ago when I was doing a basic Google search to see how "The F-words in Childhood Disability" are being used and shared. Since then I have been reading your stories and blogs and have been inspired by your writing. It is my pleasure  to write you today to invite you to be part of a new 'F-words' in Childhood Disability Research Team. We hope this is something that will interest you!"

Darn right this is something that interests me!

This research team includes Dr. Peter Rosenbaum, Dr. Jan Willem Gorter, Dr. Mary Law, and Andrea Cross, a PhD Student at McMaster.

I saw Dr. Rosenbaum present at the CP in Motion conference which took place in Halifax back in May. I was very impressed by his presentation on "The F-words in Childhood Disability", and I appreciated his perspective on the importance of a family-centered approach to child development.
I wrote about that here - http://www.throughthetulips.ca/2014/05/cp-in-motion.html

I am honoured and excited to accept the invitation and to join this integrated research team! 

Our goal is to address the knowledge needs of families with children with disabilities and to support the uptake of the 'F-words' concepts in children's health care.
Dr. Rosenbaum discusses the 'F-words' in Childhood Disability in this video, produced by CanChild.

Wednesday, July 16, 2014

A Mother Knows..

"A mother knows the words her child cannot say."

When your child is non-verbal, you have to be their voice. You have to be their protector and their biggest advocate. It is an enormous responsibility, but the challenges are far outweighed by the joy your child will bring into your lives.

Being Brennen's Mom has enriched my life in ways you cannot imagine. I have become an advocate, I have become a fighter, I have grown and changed and become something more.

Sometimes, those who can't physically speak are the ones who communicate the most important messages. Brennen knows how to hit me right in the heart. With Andrew's help, he gave me the most beautiful gift. This fine silver chain and pendant was custom made, hand-stamped letter by letter, and it speaks volumes without saying a word.

"A mother knows the words her child cannot say."

I wear it with pride, and as a simple reminder that "Not being able to speak is not the same as not having anything to say." - Rosemary Crossley 

Sunday, July 13, 2014

The Little Illustrator

Jennifer Zetts is the artist behind The Little Illustrator.  I recently discovered her Etsy shop, and just melted with the sweetness of her original designs. Jennifer makes "cutesy quirky illustrations and cards" and she says, "I hope to put a smile on people's faces and bring a little happiness with each print that I do. I love life and take inspiration from everything in it." 

I had Jen do a custom illustration for Andrew and I (which I will post below), but there are so many in her collection that I just adore!

I am so happy to be able to feature Jen's work on my blog.  I initially intended for this to be a place to share some of my thoughts, feelings and things that inspire me, and I am absolutely inspired by this girl.  Not only is she a dedicated, hard-working mother of five, but she is also the mother of a very special little boy named Camden.  Jen writes about him here: 

"My most favorite print I have ever done is "You Are Our Perfect". It will always have a very special place in my heart. The print is inspired by my sweet Camden. Before I had Camden, I remember going to ultrasounds and my biggest concern was about whether the baby had ten fingers and toes. It was like if the baby had the correct fingers and toes that meant that the coast was clear. That everything was going to be ok. I know for a fact that I didn't once give a serious thought about genetic abnormalities, syndromes, feeding difficulties, hypotonia, etc. It's funny how mother's intuition works. Sometimes it's not until we look back that we as mothers realize how right we really were. How we weren't being crazy from lack of sleep or the emotions of the moment. That what we felt was more right than anyone could have ever imagined. When I held Camden in my arms for the very first time, the last thing I thought was how perfect he looked. I couldn't even physically see him because my eyes were so filled with tears. I knew something was wrong with Camden after holding him for all of 10 seconds. I just didn't know what. I remember unswaddling his arms and legs. Counting fingers and toes through blurry eyes, like that would somehow erase the sick feeling I felt and reassure me that everything was indeed alright. Doctors and nurses reassured me that "everything was perfect with my baby" and that "he couldn't be more perfect." Turns out, depending on your definition of perfect, Camden was born perfect. Camden was born with a chromosomal abnormality, a slew of other health issues, and was recently diagnosed with autism. He has had a rough road in his short life, but he is truly one of the most amazing people I know. Camden is exactly as he was meant to be. He truly is perfect, although I'm sure there are a dozen doctors that would be the first to say he is the furthest thing from. Who he is is who we fell in love with. His heart is amazing and I wouldn't wish for him to be any different than the little boy he is today. He is most definitely our perfect."

This is so beautiful, and so so true. Jen is an amazing Mom. She has a remarkable outlook on life, and possesses a wonderful talent.

Below is the piece she created for Andrew and I.

"How often do you find the right person?"

Wednesday, July 9, 2014

On Track


Brennen is a participant in a research study being conducted by CanChild Centre for Childhood Disability Research. The On Track Study is a collaboration involving researchers, therapists, families, and children with cerebral palsy from across Canada and the United States. The aim of the study is to describe the changes in balance, range of motion limitations, strength, and endurance, number and impact of health conditions, and participation in self-care, recreation, and leisure activities over a one-year period in young children with CP aged 18 months through 11 years.

This study will determine how young children with cerebral palsy or gross motor delays progress in many aspects of their physical development and participation in daily life.  The information collected from this study will help therapists and parents monitor if a child is developing as expected in his or her physical development and participation. Then, the health care professionals working with children can use the results of this study to provide the services that are most beneficial and meaningful for each child and their family members.

At our first visit, a physiotherapist assessed Brennen's balance, strength and range of motion. I was given a questionnaire package to complete that asked questions about Brennen, our family, the services we receive and questions about Brennen's fitness, health, self-care abilities, and participation in life activities.

There are three classification systems that are assessed in the Parent Questionnaire.
1. Movement Ability (Gross Motor Function)
2. Hand Abilities (Manual Abilities)
3. Communication Abilities

Each of the three classification systems are to be rated on a five-level scale, Level I being the highest level of functioning, and Level 5 being the lowest.

In the first section, Movement Abilities, Brennen was rated a Level 5: 
Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control arm and leg movements. Assistive technology is used to improve head alignment, seating, standing and/or mobility but limitations are not fully compensated by equipment. Transfers require complete physical assistance of an adult. At home, children may move short distances on the floor or may be carried by an adult. Limitations in mobility necessitate adaptations to enable participation in physical activities and sports including physical assistance and using powered mobility.

In the second section, Hand Abilities, Brennen was rated a Level 5:
Does not handle objects and has severely limited ability to perform even simple actions. Requires total assistance. Children in Level 5 might at best participate with a simple movement in special situations, e.g. by pushing a button or occasionally holding undemanding objects.

In the third section, Communication Abilities, Brennen was rated a Level 5:
Seldom effective sender and receiver even with familiar partners. The person is limited as both a sender and a receiver. The person's communication is difficult for most people to understand. The person appears to have limited understanding of messages from most people. Communication is seldom effective even with familiar partners.

So.. what does all of that tell me? After spending so much time answering question after question in each section with no, no, no, 5, 5, 5, fail, fail, fail.. you'd think I would be more than a little disheartened. In fact, this study isn't telling me anything I don't already know. I know that Brennen is dependent on me for all aspects of his care and daily living. I know that he is an ineffective communicator. I know that he can't hold on to things. The truth is that Brennen requires total assistance with absolutely everything, and he will continue to do so for the rest of his life. This is not new information. I have accepted that, and have come to terms with all that it implies. I'm not always happy about it, but really, being Brennen's Mom has enriched my life in ways I could never have imagined. It is an honour and a privilege, and I couldn't be more proud.

What this study is telling me is that people are trying. Researchers, doctors, therapists and parents are working together to try and create better outcomes for people living with cerebral palsy, and I appreciate that. 

I was informed in the beginning that there would be no immediate benefit to my child or family for participating in this research study, however with the help of a large group of families like mine, valuable information will be gained on how to monitor and provide future services for children with CP or gross motor delays.

Saturday, July 5, 2014

How is everything?

It happens so often that someone will ask me "How is everything?" It seems innocent enough, but that is such a loaded question. I know people ask out of genuine interest and concern, but really.. everything?!  How much time do you have?

Perhaps it's someone I haven't seen in a long time, and they ask because they really don't know what has been going on in my life lately, and so they figure "How is everything" will cover all the bases.

It could be someone who does know some of the things that have been happening, but they don't quite understand Brennen's condition and all of the medical details, and so "How is everything" is a safe word choice.

In either case, my response is usually something generic like "Oh, we're good." or "Things are fine. Brennen is doing well."

Sometimes that is true, but most often there is a whole lot more to it that I don't share for a number of reasons:
#1 - I just can't be bothered getting into it at that time.
#2 - I don't want to come across as the complaining, whiny type.
#3 - I don't want to be seen as the crazy lady who shares too much information when all you wanted was a simple answer to a simple question.

I thought I'd take a minute to tell you how things are really going. Not everything.. but some things.

Brennen is still having his moments of absolute inconsolable distress (like I talked about HERE). We have seen doctors, done tests, and tried everything we can think of to try and comfort him and relieve his agitation, but nothing is working.

We've had him seen by a Chiropractor, who was super calming and gentle and very in tune with what Brennen needed and how his body responded. He saw him for several sessions, giving him slight adjustments each time. Brennen seemed to really enjoy the treatments, but there were no real lasting effects - meaning, it didn't solve the problem.

We saw both a Homeopathic doctor, and a Naturotherapist. They spent some time with Brennen, tested him for food sensitivities (Brennen reacted negatively to peanuts, wheat, rye, barley and apples), and prescribed a combination of homeopathic remedies to be dissolved under the tongue two times a day, fifteen minutes away from food (including toothpaste and gum), five minutes away from each other, and ten minutes away from other medications. They are to be kept away from electricity, magnets, strong aromas, and anything that gives off vibrations. Also, you have to clap three times and do the hokey pokey before taking them.

It's ok.  I got this.

I have to say (cautiously, yet optimistically) that Brennen does seem to be doing slightly better. Since he finished school last week, he's had some really good days! We think it might be because he is able to sleep in and wake up on his own time instead of me hauling him out of bed at an ungodly hour in the morning. I think sleep has a lot to do with it. I don't want to say too much and jinx it, but today was a good day, and I'm hoping tomorrow will be another one.

I'm sure it's the same for many parents of children with special needs. A simple question does not always have a simple answer. We even do it with each other. When a dear friend, and fellow CP Mom asks how I'm doing, I might just say "Oh, fine", when she knows full well that Brennen had a giant seizure and we ended up in the Emergency room on a Friday night.  Totally Not Fine.

I might ask the same question to another Mom and she will respond with something like "Oh, you know, pretty good." when I know that they've had a terrible week full of stressful appointments and they have been fighting with the insurance company over the ridiculously inflated cost of some essential piece of medical equipment .

I think we have a general understanding between us though, that we get it. We understand each other. We know that life is crazy and things get out of control, and sometimes it can be really really hard. We are on a roller-coaster ride that we never signed up for, and we just have to take it as it comes.

For those of you who don't have children with disabilities or medical conditions and who might not know what we are going through.. please continue to ask us. We might not elaborate a whole lot, but don't take it personally. We probably don't have the energy to talk about it, but we do appreciate you asking.

So.. how is everything? Things are good. Life is busy. Work is great. Andrew is awesome. Brennen has good days and bad days, but he is generally healthy and strong. The sun is shining and we have been able to get out and enjoy the warmer temperatures.

Life is beautiful and wonderful and horribly disappointing all at the same time, and there's no end in sight, and for that I am thankful. xo

Thursday, July 3, 2014

Tulip Tales: Evan

Karen is originally from Bay Roberts, NL but now lives in Florida with her husband and their three children. Karen reached out to me recently to share the story of her youngest son, Evan.


February 18, 2012 our lives were changed forever. We were 18 weeks pregnant and because I was over 35 and had a history of a complicated pregnancy, we opted for a more detailed 2d ultrasound at a high risk pregnancy clinic. Shortly after the test began, I knew there was a problem. The ultrasound technician stated she was going to get the physician to take a look because something was not exactly as it should be. They both examined the screen and discussed the results only to inform us that our baby would have a serious congenital heart defect.

We were devastated. What would this mean? Would our baby live? What quality of life would he have? So many questions and so much devastation we didn’t know what to do or think. The physician proceeded to inform us that there were a number of chromosomal abnormalities that could accompany this defect. We were immediately offered an amniocentesis and informed that if we were to decide to discontinue the pregnancy we would need to make a decision in the next few weeks as the cutoff for termination in the state of Florida was 24 weeks.

We could not believe that our perfect little baby who we had been watching grow for 18 weeks was now a candidate for termination in this situation. So many horrible words and thoughts blurred together. We prayed and cried and cried and prayed. The coming months would be such a mix of emotions. We were immediately scheduled for a fetal echocardiogram to determine the depth of the defect and to make a final decision as to whether we would continue the pregnancy. After much discussion, prayers, and tears, we decided that terminating our little boy’s life was NOT an option.

Our baby’s cardiac defect was known as Hypoplastic Left Heart Disease. This basically meant that the left side of his heart was not developing, and without a series of three corrective surgeries before he turned three, he would die. The key concept in this for us was that it was “fixable” with surgery, so there was hope. We would receive numerous phone calls over the next few weeks as the results of the amniocentesis came in. Each time the phone rang we would hold our breath in anticipation and each time our prayers were rewarded with "no chromosomal defects". We continued to have echocardiograms throughout the pregnancy and each time we would still hope to hear those magic words “this has all been a mistake and everything is fine.” That never happened so we had to think about what was to come and plan accordingly.

The night of Evan’s birth would be a precursor to what would go on to be a roller coaster ride that none of us could have ever anticipated. At 34 and a half weeks pregnant, I had some cramping. Turns out I was in labor and the decision was made to send me to All Children’s via helicopter because of the baby’s condition and the fact that he may need surgery shortly after birth. Evan was born on June 1st 2012 at 19:26. We were told he could be born blue and need immediate surgery but he looked perfect! Tiny and pink, you would never know that without surgery he would not make it.

Five days after he was born, Evan would get bluer, become short of breath and have to go to surgery to rebuild his little heart. He came out of surgery after six hours and the surgeon told us that everything went well. What a relief! Nothing can possibly prepare you for the sight of your perfect newborn baby with his chest split wide open and nothing but a thin opaque dressing separating his tiny newborn heart from you. You could actually see it beating! My husband and I held onto each other and prayed. None of our family had arrived yet but Dan’s mom was on the way from Michigan to help with childcare for our 14 month old and keep our seventeen year old company while we kept a bedside vigil for this tiny baby boy that we already loved so much. Tubes and machines surrounded his tiny body as he fought to heal.

Less than 24 hours after surgery everything appeared to be going well. Evan’s nurse was at the bedside with his respiratory therapist performing routine care. His surgeon had just left for his daily rounds and both of us were hanging out in his room taking turns holding his tiny hand. Suddenly a nightmare unfolded. I heard his nurse say frantically to his therapist “Push the code button. He has no heart rhythm!” We were rushed out of his room because indeed Evan’s little heart had stopped. We stood at the nurse’s station as they performed CPR on our beautiful baby boy. The surgeon rushed back in and they placed Evan on the heart lung machine to keep him alive while his tiny heart healed. We were fortunate that his surgeon had just left the room and was able to come back so fast. He had placed him on the machines so quickly that he had saved his life. Tears of joy and fear flowed freely as we called our families to ask them to join us in prayer for our baby boy. We held each other and our baby’s hand as we begged God for mercy and strength. The coming days would be the hardest of our lives.

Two days later, I received a phone call from Evan’s doctor saying that testing had revealed a bleed in his brain. Once again, we were devastated. After all of this, would our baby now also have brain damage? This was so unfair! In order to be on the heart lung bypass machine for his little heart to rest and heal, Evan had to be on large amounts of blood thinning medication which was in turn causing the brain bleed. To avoid severe brain damage and further bleeding, Evan would have to be taken off the heart lung machine before he was ready and his heart could potentially stop beating and not restart. We had to choose his brain and level of mental functioning over his heart and potential death and we had to decide now. There really wasn’t much to decide because if he didn’t come off the blood thinning medication the bleed would increase and he would most likely be brain dead anyway. So on Sunday June 10th we kissed our baby boy and with tears streaming down our faces we left him in God’s arms while we walked aimlessly through the hospital calling our family members, not knowing if we’d ever see our child alive again.

The coming days turned into weeks and then to months. Everything we had read described a serious surgery with a one month stay in the hospital. We were into month number two and our baby still needed a ventilator to breath because he was too weak to breathe on his own. We saw children come and go and some who didn’t make it as our little warrior plugged on at his own pace. One complication after another, he would become septic, his wound would not heal, his kidneys got weak and he needed the assistance of dialysis. All the while his tiny heart healed and kept beating. We still had no idea what kind of damage the brain bleed had left behind and until he could wake up from the sedation and begin to move and breath we would not know if there was permanent damage or not. No one could give us answers. He would be placed on and off EEGs to monitor his brain waves. It felt like forever once they discontinued the sedation before he would finally move his tiny fingers and toes. Eventually, more than two months after his first surgery, Evan was able to breathe on his own and the ventilator was removed. He had been there so long and had seen so many doctors, that his room contained a full cheering section as that tube finally came out and we got to hear his tiny voice for the first time since his fifth day of life. What a sweet sound that was!

Unfortunately, Evan continued to have setbacks. His little lungs had taken quite a beating and he would have an ongoing battle with oxygen as he grew stronger. He was being fed through a tube from his nose to his stomach and had never eaten anything by mouth. He had no idea how to suck and swallow. By now, Evan was three months old and most of the immediate danger had passed. He did, however, still have a shunt next to his heart that proposed a continuous risk of becoming clotted and we had to be very careful to not allow him to get upset or be in any distress.

Over the next few months, Evan began to move around and behave more like a typical baby. He seemed to move and breathe appropriately and was beginning to look at people and things. He would continue to have terrible days where he would become inconsolable for no apparent reason. He would need several IVs, blood draws and respiratory treatments. One of us would try and be at his bedside at all times but I had run out of maternity leave at this time so it became increasingly difficult to stay at all times and we would take shifts. I would stay for most of the weekdays and Dan would spend the weekends.

Time was passing quickly and our baby was growing fast. We were heading towards the time for Evan’s second stage of repair where his shunt would be removed and his circulation would be rerouted once again using his own vessels. He was four months old and doing well except he had not yet learned to eat on his own. Speech therapy was working with us to teach our baby the basics of eating but it was moving quite slowly. His neurological status continued to improve and no lasting deficits were seen. Discussion began on whether we should take him home or keep him in the hospital for his second surgery. After much deliberation and consultation with his surgeon it was decided that it would be in Evan’s best interest to stay in the hospital rather than risk a devastating infection that would keep him from being able to get the second lifesaving surgery when needed. So we kept our bedside vigil. My mother came from Newfoundland to relieve Dan’s mom, who was helping out with childcare for our now 17 month old. We were so blessed to have such strong family support.

At 5 months old, on November 5, 2012 Evan would go for the second stage of repair of his tiny heart. We were so scared as we sent him off with the surgical team once again. Prayers went out across two countries that God would continue to show His mercy on this tiny baby and show us another miracle. The second surgery went well and everything began to look up. Two days after surgery we removed Evan’s breathing tube once again. He was breathing on his own, but he was weak. A few hours after removing the tube, Evan became more distressed and the tube had to be placed back in. Another long week or so of ventilator support and his tube finally came out and stayed out. Coming off the oxygen was a different story. Evan’s oxygen requirements would rise and fall as well as our emotions since this was a major obstacle to us taking our baby home and FINALLY being a family. Also the feeding issues had arisen again since he was still being fed through a tube in his nose. In order to bring him home he either had to eat enough calories to grow or we had to place a more permanent tube directly into his stomach to feed him through until he could learn to eat. We wanted him home so badly but putting him through another surgery and placing him under anesthesia again terrified us and seemed unthinkable. He kept vomiting up the formula and our frustrations continued. It seemed like a vicious cycle of vomiting followed by dropping oxygen levels. Stomach specialists and lung specialists were consulted, formula was changed, and medicines were added, adjusted and taken away. All to no avail, so we made the decision to place the gastric tube just days before our baby’s first Christmas.

Evan would spend his first Christmas in the room that he had never left, and Santa would visit him there. I put up a tiny fiber optic tree in Evan’s room as tears streamed down my face. I had been so determined to have him home for Christmas, but he had other plans. We were given special permission to bring our 20 month old boy Jake for a quick visit on Christmas day so that we could be together as a family. All Children’s Hospital and their Child Life team were incredible. They did all that they could to help us.

On January 17, I was heading over for my usual week long stay. I picked up my cell phone to call Evan’s nurse for my usual morning report. As the nurse started talking she told me that his discharge orders were written and he was coming home! I couldn’t believe my ears! I was laughing and crying and calling my husband to assemble the crib we had bought but did not assemble because we could not bear to look at an empty crib and wonder if Evan would ever sleep in it. I arrived to see my baby and the room was buzzing with excitement. All kinds of last minute arrangements and tests were being ordered and done so Evan could come home TODAY! I packed seven months worth of stuff into a wagon and we were ready to go. It all seemed so surreal. I was going to get to hold my baby all day and all night if I wanted and I wouldn’t have to hear a monitor beep or share our private moments with anyone! I was so excited I could hardly breathe. Dan arrived, we loaded our van and we carried our baby outside of his room for one final victory lap around the ICU. We said our goodbyes and with tear stained cheeks, we carried our baby out into the world. What a day! I rode next to him in his car seat as he slept peacefully. All was right in the world as our family prepared for the next chapter. We were free to take care of our baby on our own, and with a pile of instructions and equipment we were ready. We could do this!

I thank God every day for the preexisting strength and love of our family. It is the glue that held us together. We had good days and bad but finally the good days were outnumbering the bad and we all got stronger every day. Evan was growing and smiling and quickly becoming a very important family member.  The battle isn’t over yet. Evan will need another surgery before he is three and there will be many prayers and tears but so far life is good and we’ve made it! My new job is in the pediatric emergency room and every day I am reminded how lucky we are that our child’s problem was fixable by the hands and knowledge of great medical professionals. God blesses us every day and we are forever grateful. I have gained so much respect for my fellow medical professionals and all that they do.

Evan just recently celebrated his second birthday. He has been getting physical therapy twice a week due to severe torticolis, which is a tightening of the neck muscles and tendons usually on one side of the neck. Our physiotherapist is very experienced and recently sent us for further evaluation with a neurosurgery team because this condition normally resolves itself by now. After having an MRI and a CT scan of his neck, I received a call from the neurosurgeon stating that himself, his partner and the radiologist had spent three hours evaluating Evan's tests and they were in agreement that Evan needed urgent neck surgery. His cervical or neck vertebrae we're not formed properly and we're unstable, which meant that he was at high risk for a spinal cord injury unless he had a cervical fusion done to stabilize his neck. I couldn't believe my ears. My poor sweet baby who was just starting to stand and talk now had to be admitted and undergo major neurosurgery and weeks of recovery!! How was this fair?!!!

My husband and I cried and grieved once again for this poor child who had no idea what lies ahead. We were headed back to the hospital where it all began. The only saving grace was our confidence in the staff there and our level of comfort after bring there for so long. Imagining our little boy in a neck brace with breathing tubes and all that comes with major surgery was more than overwhelming. We met the surgeon who was an amazing man with an excellent reputation, thank goodness. Now we wait. The surgery is scheduled for July 24 and each day it gets closer I hug him a little closer and try and stay strong for my big brave warrior.


Karen, thank you for sharing your beautiful boy with us! He is certainly a brave little man! As you get ready for his upcoming surgery, know that we are thinking of you and wishing you and your family much strength and love.

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.