Wednesday, February 26, 2014

Handling the News of Your Child's Diagnosis - Guest Post by Shani Thornton

My hope for this blog is to connect with other parents of children with special needs and to build a supportive network and community. I am honoured to be able to give people a glimpse into my life, in hopes that there will be an increased understanding and awareness of what parents go through when raising a child with special needs.

Today, I am happy to publish an article written by Shani Thornton.  Shani is a certified child life specialist and a full-time Mom. 
Her words were truly a gift for me, and one that I am happy to share with you.

Handling The News of Your Child’s Diagnosis 

You are sitting in the doctor’s office and you can sense that you are about to receive some life changing news. Maybe you are pregnant, so you gently place your hand on your belly to let your baby know that you are close, or you are holding your squirmy toddler and softly singing in their ear while rocking them with ease. You might have had to leave your bedside post of holding your child’s hand while they are hooked up to monitors and on a breathing machine.

When the doctor walks in, your body is fueled with adrenaline. They start to give you information about a diagnosis, prognosis and treatment plan. The emotions take over and there is a physiological change occurring to your body. Tears are streaming down your face, you have difficulty breathing or speaking. There is a ringing in your ears, you may feel nauseous and your head is swirling with jumbled thoughts and information.

What is happening? What did they just say? You are absorbing some of it, but you know it’s not all sinking in.

You look around and try to grasp a sense of reality while knowing that your entire world has been flipped upside down. There is feeling of isolation and that no one has experienced this before.

You leave the meeting holding medical pamphlets and feeling beaten down; red faced, puffy eyes, still trying to catch your breath from the bomb that was just dropped on you.

If you are with your companion then you are wrapped into their arms, hoping that with a big squeeze, this nightmare is just that, a nightmare and you will awaken soon to your normal life.

If you are alone, then you are on the phone calling your number one. When you hear their voice, you break down crying uncontrollably and barely able to speak. The words do eventually make it out and hearing yourself say it makes it hurt even more.

Where do you go from here? How can you envision your future when it has been completely altered without you causing it?

Oh no, that thought has now allowed the feelings of guilt to take over. You start the blame game and the finger is pointing directly at yourself. This is just too much. You can’t do this, this isn’t happening.

Then you feel your baby kick, or hear your toddler make a noise or you go back to your bedside post and see your beautiful child fighting for their life.

You have to do this. You are your child’s voice and protector. The unconditional love is the driving force to push you forward.

We got your back

As a child life specialist, our role is working with pediatric patients and their families, for their psychosocial and developmental needs. We are there to provide support, empathy, preparation and play. We help them find a sense of control and teach advocacy skills in this very complicated medical world.

I thought it might be helpful to share what to expect after a diagnosis and some healthy ways to cope.

  • Entitlement to Have and Express Your Feelings – You are going to have a roller coaster ride of emotions. The feelings of self-doubt, denial, guilt, anger, sadness and loss are just a few of the biggies. It is okay to have all of these feelings and more. Share them with someone you trust, write them down or hear yourself say them out loud. Your body can only hold so much. By suppressing your emotions they will eventually spill out when you least expect it. Release them and you will feel more balanced and better equipped to take care of yourself and your child.
  • Searching Online- One of the first things that you may want to do is get on your computer or smart phone and start looking up medical information. It will be difficult to filter the facts from fiction and also what would be suited for your child’s specific diagnosis and care plan. I would suggest finding out if there is a medical librarian or family resource center at your hospital. They are trained to help you find the appropriate, accredited information without getting lost in the nonsense.
  • Loss of Control- In the beginning there will be a HUGE sense of loss of control. You did not cause this and you did not want this for your family. There will be many days that you are overwhelmed and feel like someone else is steering the wheel for your life. When this happens start to find the small decisions that you still have control over. Small choice making can help you feel like you are in better control of the whole situation.
  • Transitions- There will be many changes that will occur. Your job, home, finances, vehicle and even your day-to-day routine can be affected. This can become very stressful and burn you out quickly. If you need help, ask for it. There are wonderful programs, professionals and neighbours who would all be willing to help. It may be as simple as bringing over a cooked meal twice a week or setting up family meetings with the doctors to clarify information.
  • Support System- Start to surround yourself with supporters. At first you may think that all of your friends and family members will be able to help, relate or even just validate your feelings. Unfortunately that is not always the case. You may find that some of the best people to have on your team are strangers who are going through the exact same thing. Joining a support group in town, talking to other parents at therapy/doctor appointments or finding a community site on social media may be the place to look. You may even decide to start-up your own blog; this could be a great way to release feelings, find veteran parents and even give tips on what has been working for you.
  • Organization- This may not be your strong suite, but it soon will be. With all of the health insurance information, medical history and schedules, you will be very lost and overwhelmed if there isn’t some organization to keep it all in line. Purchase a calendar, note pad or use your electronic device to store all of this information, so it is readily accessible. Writing down questions and concerns as they come up will also help you to remember and bring up when meeting with the medical team.
  • Me Time- The juggles of work, kids, household upkeep and now the new health diagnosis for your child, can put you overboard. Find a healthy way to release stress and commit yourself to it. Maybe it is working out, girl’s night or just taking a drive alone. Do something that will help you stay rejuvenated. There should be no feelings of guilt, as you will be a better parent to your child if you take care of yourself first.
  • Sibling Involvement- Siblings play a very important role. They should be included and told what is happening. If you struggle with ways to explain it, reach out to a professional, such as a child life specialist, who can help assist you. Having them join a sibling support group is also a wonderful way to help them express their thoughts and feelings, process what is happening and feel like they aren’t the only kid going through this.
  • You Are the Expert- You will be encountering many medical and educational professionals. They are experts in their specific field, but they are not the experts of your child, you are. You will know your child’s likes/dislikes, triggers/calming methods, and preferences in food, clothing, touch, people, sounds and more. Keep that all in mind when communicating with the team. Speak up and advocate for your child, your voice is incredibly important and needs to be heard.

This is a different path in your life than you thought you would be on, but just know that you are not alone. There are other parents that have already gone through this phase, are going through it now or will go through it. You will still have that amazing relationship with your child. You will teach them so much and at the same time you will learn and grow from them.


Shani Thornton is a wife, mother and author of “It’s Time For Your Checkup: What to expect when going to a doctor visit.”
She currently lives in New York with her family and remains active in the child life field while leading workshops for parents and caregivers.
Read more from Shani on her website Child Life Mommy: Tips from a Mom and a Child Life Specialist

Sunday, February 23, 2014

28 Days of Play

Rachel Cedar from You Plus 2 Parenting has combined 28 writers to talk about the challenges of playing with your kids in her "28 Days of Play" Series. She reached out to notable bloggers, published writers, moms & dads, thinkers and seekers and asked an important question:  Do you play with your children?”

You can read my response HERE.  (I could have said so much more, but was limited to 300 words!)

Thank you, Rachel, for inviting me to be a part of this important discussion!

I would love to hear from other parents of children with special needs.  How do you play with your kids?

Saturday, February 22, 2014

Tulip Tales: Emily

Emily is 9 years old and has a condition called cerebral dysgenesis. She has some cognitive delay, as well as partial paralysis on the right side of her body, and needs assistance with all of her daily activities. Her mother, Tina, shares her story.


It was Christmas time and Emily was about 3 weeks old.  She started to have what we thought was just bad gas and a lot of hiccups. Her Dad and I went out for New Year’s Eve celebrations and about an hour later we received a phone call from my sister who was babysitting for us. Those “gas episodes” had gotten really bad, and she had called an ambulance. Once evaluated by the emergency department it was determined that they were actually seizures, and she was having a lot of them.

Emily was taken to the ICU at the Janeway, where we spent three gruelling months trying to find some answers. It was discovered that there was an abnormal growth on her brain that was causing the seizures.

After much discussion with her neurologist, we were referred to Sick Kids hospital in Toronto.

Emily was 10 months old when she was admitted to Sick Kids for a procedure called a hemispherectomy. A hemispherectomy is a very rare surgical procedure where one cerebral hemisphere (half of the brain) is removed or disabled. This procedure is used to treat seizure disorders where the source of the seizure activity is contained to a single hemisphere of the brain. It is solely reserved for extreme cases in which the seizures have not responded to medications or other less invasive surgeries. Hemispherectomy is considered the most invasive surgical operation in use today. In Emily's case, it involved removing the growth on her brain, then disconnecting the left side of her brain where the seizure activity was. That left Emily with the function of just the right side of her brain, in turn causing her paralysis and cognitive disabilities.

Her surgeon was very confident that Emily would have a good quality of life, and would more than likely be seizure-free. The success rates of this type of surgery are quite good, and in many cases, children have come back full circle. Emily’s outcome was very pleasing to the surgeon as well as to all of our family.

The doctors at Sick Kids were wonderful. They provided great support and training in preparing me to care for Emily when she was ready to come home.

I knew she was going to face many challenges but I thought they were mainly going to be physical.  We didn’t know what to expect of her intellectual capabilities as she was only 10 months old at the time.

Emily has had to have physiotherapy and occupational therapy almost daily, but she has come a long way! One of Emily's biggest challenges was the ability to walk. Her right leg had partial paralysis and required a brace. For close to two years, Emily's means of getting around was scooting on her bum. She showed no desire to walk, as she was very comfortable and much faster scooting around on the floor. When her physiotherapy sessions increased, she slowly progressed. She started using a Pony walker to help her get around, and she did well with it. We believed there was hope after all! Within a short time, Emily progressed from the Pony walker to a regular walker with less support. It wasn't long after she had mastered that and moved on to just a cane.

One day, after several years of hard work, perseverance, and lots encouragement, she suddenly found the courage to take her first steps unassisted. What a day that was!!!! Many tears were shed, lots of kisses given, all in the joy of this incredible little girl. She amazed us.

That was almost 4 years ago. Emily now walks freely on her own, climbs stairs, runs, jumps and is constantly trying to outrun everyone who walks with her! Emily has exceeded what we expected of her. She is very active in everything she does. She enjoys swimming and music therapy. She loves going to school and has excelled at everything in school. She is very sociable now. She is continually learning new words and phrases and her communications skills with others have improved greatly.

Emily was recently awarded a “dream room” sponsored by The Sunshine Foundation. They purchased some large sensory items for Emily and we renovated a spare room in our home and turned it into a multi-sensory room for her. She loves her new room and always asks to play in it when she arrives home from school.

In the last month or so, Emily’s seizures have returned. They are only happening in her sleep but her neurologist is having her admitted for a video EEG. When we find out the results of that we can move forward to ending her seizure activity once again.


Thank you, Tina, for sharing Emily's incredible story with us! She is an amazing little girl. She has come so far over the past few years. Personally, I find it remarkable to watch her grow and progress. I have witnessed some of her early challenges, and have seen her overcome them. I am happy to have been able to be a part of Emily's life. We are all so proud of her!!

Again, 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, February 19, 2014

Friday Friends

When Brennen was very young, we moved into a brand new home in a newly constructed subdivision. It was the ideal setting for a young family. The intertwined cul-de-sacs were full of young children and stay-at-home Moms, and the air held the promise of a beautiful future.

There was a neighbourhood playground with swing sets and climbers. There were tricycles and scooters parked on the lawns, and small dogs barked from the windows at passers-by.  

Us neighbourhood Moms didn’t know each other, but we would exchange pleasantries in passing while pushing strollers or checking the community mailbox.  

One day, a few of us got talking and came up with the idea of getting together with our little ones for a “play date” and a friendly chat. It sounded like a wonderful idea, so we decided on a day and time. An eager Mom offered to host the gathering, and so off we went, pleased as could be with our newly made plans and the promise of friendship.

On the morning of the play date, I packed Brennen into his stroller and we headed down the road, just a few houses away, to join our neighbours.  

Now, let’s back up just a little. When Brennen was eight months old, he was given a diagnosis of cerebral palsy. I had no idea what to expect, or what that would mean for him, or for our family. Brennen was my first (and only) child, and I had nothing to compare him to. I didn’t even know anybody with a disability, so this was completely uncharted territory for me. I was still dealing with the facts and coming to terms with our situation myself, so maybe going on a “play date” with all of the neighbourhood kids wasn’t the best idea at that time, but alas, we went.

We arrived at our neighbour’s home and were welcomed inside. I noticed right away that there were toddlers busy playing outside in the backyard. There were some other little ones gathered around a huge pile of toys in the sunken living room, safely protected from the step by a large, secured baby gate.  

There was a group of Moms sitting around the kitchen table, sipping tea while sharing photos and stories. Another group were deep in what seemed to be a very serious conversation about ‘Mother and Baby’ Yoga.

Looking around, it wasn’t clear what Mom owned what child.  

I took a seat at the table with Brennen in my arms. After all, I wasn’t able to put him down. At just over a year old, he couldn’t sit up on his own, and he certainly couldn’t play! In fact, he wasn’t even able to hold his head up by himself, so I sat and held him. And I sat and held him. And no one spoke to me. They looked, but they didn’t speak. They didn’t ask questions, and I didn’t volunteer information.  

At one point, the homeowner did offer me a cup of tea (which I would have loved!), but with Brennen in my arms it would have been impossible to drink it, and I certainly couldn’t get up to make it.  

I knew at that moment that we did not belong there. I knew it because I felt it. Deep down in my soul, I knew that we did not belong, and it was a horrible, horrible feeling. It scared me. I feared for Brennen’s future, and I feared for my own. I wanted him to belong. I wanted us to belong and to feel welcome and included and involved. Ultimately, isn’t that what we all want for our children, and for ourselves? 

I found myself full of apprehension, fear and sadness for the extra challenges that I knew my child would face. (Several years later, that has not gone away.)

Shortly after our unsuccessful play date, Brennen began having regular physiotherapy appointments three times a week (in addition to occupational therapy and speech therapy). At his physio sessions, Brennen and I would join his therapist on a mat in the corner of a large gym. There would be other patients having their own therapy sessions in different areas of the gym, and over several weeks I began to take notice of these other children. Though I tried not to stare, I would often catch myself sneaking glances, looking (hoping?) for similarities, and trying to overhear conversations. I would look to see if the other little boy was able to roll over, or if the girl in the far corner looked like she could sit up on her own. They seemed to be doing some of the same things we were, and working on some of the same goals. I also found myself looking to the parent (most often the Mom), and wondering how she was coping. She looked so put together. How was she managing everything? Had she accepted her child’s disability, or was she falling apart on the inside like I felt I was?

As the weeks went by, I began asking questions, and I guess the other parents had as well. The physiotherapists took note of this, and began to bring us around, one at a time, to meet the other children. There were five of them: Brennen, two boys and two girls, who were all around the same age and just happened to have therapy at the same time on Friday afternoons. Our casual meeting grew into a planned physio “play group” that we later called “Friday Friends”. They would pull all of the mats in the gym together and our five children would “play” for a full hour, while us Moms talked (cried, vented) over tea and coffee in the hospital cafeteria.  

We talked about grief and loss. We talked about surgeries and medical procedures, tests and diagnoses. We talked about things that no one else would understand, and sometimes, we didn’t talk about our children at all!

I would look forward to Fridays. I felt that I was finally in a good place, that I wasn’t alone, and that there were others who could relate to what I was going through. We shared the same fears and worries for our children. We were uncertain of what our futures would look like, and were afraid to even think too far ahead. That group of Moms became my strength and support, and though our schedules have changed, we are still close today.

I am in a much better place emotionally than I was just a few years ago, however there will always be worry. Having a child with physical and mental challenges means that there is going to be added suffering, and I carry that with me every day.

I want Brennen to have as many opportunities as he can to live a happy, fulfilling life. I cannot change the physiological parts of his body that limit him, but I can nurture his mind and his spirit. I can provide him with unique experiences and surround him with love. That last part I’ve got mastered. I love him so much that some days I fear my heart might explode.

If you are a special needs parent, let me tell you something: You are not alone. We are in this together. We are on the same team. Our children need us and we need each other. Don’t think for a second that you are alone, or that you have to figure it all out by yourself. I am in a constant state of ‘figuring it out’, but I am learning every day, and there is so much we can learn from each other.

"Anyone can give up; it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

-- Christopher Reeves


*This article is also featured on Child Life Mommy

Sunday, February 16, 2014

Peggy Tremblett: artist

Peggy Tremblett is a local artist, and a new found friend of mine! She describes herself as a "visual artist / part-time graphic designer / full-time disaster." She lives in downtown St. John's with her cat named Alvy and her dreamy bearded husband. She is constantly making art, taking commissions, listening to good music and drinking tea.

I had seen some of Peggy's work a few years ago at an art show, and was re-introduced to her at the end of last year. I am captivated by the amount of thought and detail that she puts into her creations. I've never seen anything quite like her custom Russian Nesting Dolls. They are unique and so full of character!

I instantly fell in love with her one-of-a-kind art and wanted some for my home. I sent Peggy a few photos and told her some important details, and she transformed five blank wooden spheres into these epic pieces of art. I am totally in love with them! Every member of our family is beautifully represented, right down to the colour of our eyes, and the handles of Brennen's wheelchair.

I just LOVE my little family!!

I asked Peggy to answer a few questions, and I loved getting to know her more through her answers!

Julie: How do you describe your style of art?

Peggy: I'm not really sure how to describe my style, probably because I've never actually had to before. I suppose it's sort of lowbrow/folk art-ish. 

Julie: Did you have any sort of art training, or were you always a "doodler" and evolved your unique style over time?

Peggy: I have been making art since I was a child. It was something that always interested me. As soon as I could hold a crayon, I was drawing with it. I spent most of my younger years drawing things very realistic but as I grew older I discovered that I like photos to look real and art to look a little weird...a little unreal. In high school I took extra art classes and after high school, I studied Graphic Design, Photography and Textile Art. My style has changed ever so slightly. The first acrylic painting I did in ninth grade is eerily similar to the style I have today. I still paint the circle cheeks and the patterned hair. I think my art has definitely gotten cleaner and of course I've learned a lot of new techniques in the past 30 years so that has changed my way of painting.

Julie: Where do you draw inspiration for your artwork?

Peggy: When I am painting for myself and not doing a commissioned work, I tend to paint a lot of women. Women with double chins and bad self-esteem. Or women who long after men, who may not see the value in themselves. I suppose I find those sorts of things oddly beautiful. The ache of unrequited love or the pain of feeling small and ugly when the rest of the world seems so beautiful and consuming. I definitely find a lot of inspiration in that.

Julie: Do you have a favorite piece that you've done, or an illustration that has an especially good story behind it?

Peggy:  My favourite pieces that I've done may be a set I did for a mini show at the Eastern Edge gallery. It was a series of paintings that I did during a failing long distance relationship. The male figures were maps of California (where that particular ex lived) and the female figures were flatly painted women with sad eyes and the desire to run. I can't quite say why I liked them so much. Perhaps because they helped me make the decision to end that relationship, or well they helped me to see that there was no longer any benefit in staying in it. My favourite commissioned work was a giant painting of Gustav Klimts The Virgin with the girls painted in my style. It was so fun to do.

You can check out Peggy's work on her Facebook page:
You will also see her drawings in the local paper The Overcast. She is the official staff doodler.

Saturday, February 15, 2014

Tulip Tales: Sarah

Sarah MaKayla Clarke was born on the 19th of April in 2006, just two days before her due date. It was a seemingly normal pregnancy and delivery, and her parents were sent home with a “healthy” baby girl. Her mother, Ayla tells her story.


When Sarah was very young, she started crying. I don’t just mean little crying fits. Sarah screamed all day & night for several months. Then the “episodes” (as we called them) started. She would go stiff and tight, her eyes would glaze over and it looked like she was a million miles away. We took her to two separate doctors and public health nurses to try to figure out what was going on with her. We were told that the stiffness and tightness was just her way of learning how to move her muscles outside of the womb, and that the crying was “nothing serious”.

The day we finally got some answers was the worst day of my life. Sarah was only five weeks old and she’d had about twenty of these “episodes” in the matter of half an hour, so we packed up and rushed her to Carbonear General Hospital. They weren’t able to find anything wrong, and were about to send us home, when a doctor just happened to see her in one of her “episodes”. She said, “She seems to be having a seizure!“ With that, we were transported to the Janeway Children’s Hospital in St. John’s, where we stayed for the next two weeks. Sarah was put through numerous tests.. blood work, x-rays, MRI, EEG, CT-scan and spinal tap. She went through it all.

It was found that Sarah had a large amount of scar tissue on her brain, which we now know caused the seizures, as well as vision loss due to the formation of congenital cataracts in-utero. It was a lot to take in, but at least we had some answers and we knew that with the help of surgery some sight would be able to be restored, and with the use of medications we could try to control her seizures.

After about a month of regulating her medication, we were able to fly to the IWK Hospital in Halifax to have Sarah’s cataract removal surgery. We spent three weeks there and went through two surgeries but it was well worth it because Sarah is now able to see!

I still felt as though there was something else going on with her that we weren’t aware of. Then I got a phone call with an appointment at the Janeway to see Sarah’s pediatrician. Sarah was just five months old when we were told that she has Cerebral Palsy. I was completely devastated. I knew she was a bit behind with the normal developmental milestones. She couldn’t sit or hold her head up. Her trunk was really weak she wouldn’t hold on to anything. I was terrified thinking about the future and what our lives were going to be like from that moment on.

Right away we were sent to physiotherapy, occupational therapy, speech therapy, audiology and genetics appointments. Sarah was followed by the whole rehabilitation team. We were told about support groups and programs that were set in place to help children and families like ours. We didn’t take advantage of these services right away because I just couldn’t. I wasn’t ready. I needed time to understand and come to terms with what was happening to our family.

After some time, the feeling of sadness and loss subsided. My family and I were faced with the decision to either sit back and be upset with Sarah’s diagnoses, or to jump head first into therapy and do whatever we needed to do to help Sarah. We decided to become a family totally united, to face all of her challenges together, and to work our butts off for Sarah!

We now take part in Rainbow Riders and Easter Seals, which Sarah loves! She has been involved with horseback riding, swimming & music therapy. We go to family camps so we can connect with other people who are going through similar situations. Sarah has made lots of new friends, and I have benefited by meeting children older than Sarah and seeing how much they are able to do. I also get the benefit of talking with other moms and hearing their experiences and stories.

The best additional therapy that we have found has been Conductive Education, which is an intensive therapy that is based around re-training the brain of people who have suffered a brain injury. It focuses on strength-building, teaching her what she is able to do and focusing on that. It has been an amazing experience for Sarah. We travel to Halifax twice a year for up to two weeks at a time to receive this therapy, and we continue the therapy at home as well.

We were once told that Sarah may never sit, stand, walk, talk, or eat on her own, and that she may never be able to live any sort of independent life. After finding the Conductive Education program and doing it for a few years with her now, I am thrilled to say that Sarah has made leaps and bounds! She is building her vocabulary, she can sit all by herself and stand for several minutes by herself. She is walking with support, she can ride her adaptive bike and so many more things that we never expected to see her do! It’s an ongoing process with lots of work still ahead but there have been many improvements, and she is doing new things every day!

I am so thankful for all of the love and support we have been shown over the past few years. If I could go back and tell myself anything, it would be to slow down, take it one day and one step at a time. We still have our battles to face, but we are a strong, united family and we have a very strong little girlie!

Watching her struggle with all of her appointments, surgeries, sicknesses, seizures and hospital stays has been scary, overwhelming and heartbreaking at times. There have been nights where I didn’t know how we could do it anymore. But then we see her working so hard, always with a big kiss and smile for me! She takes my breath away and melts my heart. Her smile will always keep me going.
Sarah loves life and is the happiest little girl I know. We are so lucky that she came to us. She has opened my eyes to a side of the world I never knew existed and a kind of love I never could have believed possible.

Sarah is not just living with CP, she is thriving with it!


Thank you, Ayla! Sarah is such a sweet little girl and it is so exciting to watch her progress in the way that she has! I can’t wait to see her smiling face again soon!

Click HERE to sponsor Sarah at 'Stand Up for CE', an event to raise funds for people participating in Conductive Education classes.

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.


Thursday, February 6, 2014


Yesterday was Brennen's birthday.  I am officially the mother of a nine-year-old!!

I don't know where the time has gone.  I remember so vividly, nine years ago, holding your tiny seven-pound body.  Not knowing all that would be in store for us.  Not having any idea of the magnitude with which my life would change.

Yesterday, we honoured you. We had a perfect evening with our closest family, celebrating nine very special years, and one very special little boy.
Brennen, you have brought so much love and happiness into our lives. It is impossible to describe how valuable and how full these past nine years have been.  

I am overcome with emotion at the realization of not only the joy you bring to me, but the joy you bring to so many others.

Brennen, I am so proud to be your Mommy.
Brennen, you are loved.

Monday, February 3, 2014

Tulip Tales: Carter

I am thrilled to publish our third installment of ‘Tulip Tales’!  This time, my dear friend, Kim will share her story.


On February 8th, 2011, I was given the most devastating news: “Your little boy is really sick right now.  We have to take it hour by hour.  Although his condition is not rare, it is not common and babies do die from complications like this.”

Only hours earlier, I’d had an emergency c-section due to inactivity from the baby.  My life was changing at that very moment, I just didn’t realize how much.

After hearing those words from the doctor, I’ll be honest, I felt like I shouldn’t get attached. I was scared. I had almost given up. I felt like I was mentally checking myself out of this world.  For the first time in my life, I had an overwhelming feeling of helplessness, and looking back on it now, I can see that I simply did not know how to cope.

My little “trooper” was born with blue feet, and severe complications that included underdeveloped lungs, an enlarged liver and heart, hypertension and hyperglycemia.  In addition, initial EEG reports showed long pauses in brain wave activity and we were referred for a hearing test for unresponsiveness.  Things did not look good.

Even though the odds were against him, Carter was discharged after 4 weeks in the NICU.  I was elated and felt that finally we would be able to start living as a family.

Carter was born in St. John’s but at the time, my family was living in Houston, Texas.  As soon as Carter was cleared to fly, we were excited to return back to Houston. That excitement slowly dissipated as each day was filled with the sounds of a screeching baby.  After what we experienced, however, I was very grateful to hear him cry and I embraced all that he offered, at least for the first couple of months.  At some point, hearing him cry ALL DAY.. NO NAPS.. NOT FEEDING…kind of wore me down.  I brought him to a pediatrician, who suggested he was colicky. I was glad to get a diagnosis and to know that there was a light at the end of the tunnel.. but that was not the case.  The prescription didn’t work and the crying didn’t stop.

A trip back to Newfoundland was coming soon for a follow-up with Carter’s specialists at the Janeway, including the infant screening test for hearing.  I was thrilled to be going home!  At the hospital a few days later, my excitement was abruptly cut short as I received a new diagnosis: “Your baby is profoundly deaf”.  What?!  I was in shock.  In fact, I felt completely helpless yet again.  When I went home that day, I landed in bed and physically did not move.  I don’t remember how long I was there, but I do recall my father visiting me and he told me that I had a choice. I could stay in bed and be miserable, or I could get up, take care of my children and enjoy and treasure every moment. Wise words from my father!  As difficult as it was for me at that time, I knew he was right, so as soon as we returned back to Houston I started learning everything I could about the deaf community.  I ordered every Baby Sign Language DVD on the market!  I was committed, and knew that as a family we had to be actively involved and to embrace this new culture.  I found myself becoming more excited as I watched the DVD’s, learning the new language and teaching my older son Hunter (who was 2 at the time). We also made the huge decision to have Carter implanted with Cochlear Implants to allow him the best possible opportunity to hear.

As months went by, Carter was exhibiting some rather concerning traits and not meeting any milestones.  On our next visit back to NL, we saw a neurologist who confirmed that Carter was indeed significantly developmentally behind.  He told us that at Carter’s age, a diagnosis could not be given, however we were to seek physiotherapy and occupational therapy as soon as we returned to Houston. I had felt for several months that something wasn’t right, and even though a diagnosis could not be given, I had a sinking feeling that Carter had CP.

When Carter was 10 months old, we drove back to NL from Houston with our two sons, and this time we would be staying. Carter was scheduled to have his cochlear implant surgery and we realized that he would receive the best care at the Janeway, and it just made sense to be home closer to family and friends for support.  A month later, we received the official diagnosis:  “It’s likely your son has cerebral palsy”.  They say “likely” because after testing him for everything else this was the only possible explanation, and there isn’t a specific test for CP.  Even though I had suspected it, I was absolutely crushed with the diagnosis. I couldn’t help but feel guilty and mad all at the same time!  I felt sorry for Carter and thought, how unfair.. he’s already deaf!  I didn’t know how I was going to cope. I couldn’t fix it!  For a very long time I felt there was nothing I could do. I’m not a doctor or a therapist. I thought, the only thing I can do is be there for him. Take him to his appointments, work on things at home with him.  But it just wasn’t enough for me.  Feeling the need to do more, an idea was born when the Hard of Hearing Association contacted me to help out with a walk-a-thon. I offered to bake cupcakes and arrange them in a decorative pot to look like bouquets of flowers and sell each one for $20.  The idea was a hit and in just a few days, I baked and decorated more than 500 cupcakes, raising over $1000.00.  ‘Carter’s Cupcakes‘ was born!  I learned a lot in that short week.  Baking and decorating those cupcakes made me come alive!  I found it meaningful. I felt that I was finally doing something more for Carter. Through Carter’s Cupcakes, I could help raise awareness and make donations to the charities my son was involved with.  In addition, I discovered that I loved doing it and found it to be very therapeutic and a much-needed distraction from a very stressful period.

My husband, Todd was also feeling the same desire to do more, so after volunteering hundreds of hours and donating more than $10,000.00 of our own money, he built a backyard ice rink, hoping it would attract attention to raise money and awareness for the charities as well. In addition to the overwhelming amount of provincial, national and international publicity, to date “Reason for the Rink” has raised more than $72,000.00 for Easter Seals NL, Rainbow Riders NL and Mazol Shriners. Throughout the entire process of late nights, early mornings and freezing temperatures, my husband would continuously comment on how therapeutic he felt it was for him.  At a time in our lives where things seemed to be out of control or uncertain, his rink – like my cake adventure, became something meaningful, something concrete.  We could say we played a direct role in making a difference. It gave us something to look forward to, something to be excited about. We were being proactive, and it gave us hope.

Carter will soon turn 3 years old and is one of the brightest kids you will ever meet!  His smile is contagious and can literally light up a room and lift anyone’s spirits. He is rarely in a bad mood and is a social butterfly!  He has recently started communicating by using a few signs and has been hearing at an average level when wearing his cochlear implants. His favourite activities are playing with his brother and snuggling with Daddy. He is extremely inquisitive, attentive and never wants to miss out on anything!  He absolutely loves Toopy & Binoo and will never turn down chocolate pudding!  Other than the fact that he has a team of a dozen specialists continuously working with him, he is your average 3-year-old!

Although the past few years have not been what I anticipated, I feel very lucky!  Doctors have told us that Carter will most likely never walk or talk, so people may think we are crazy to consider ourselves “lucky”, but we are. We are lucky because it opened our eyes, our minds and our hearts in ways we could never have imagined.  Only 3% of Canadians fall into the category of being a “Special Needs Family”.  97% of families will never get to experience what we have, which has made us not only a stronger family but better human beings, and for that we are eternally grateful. We are actively involved in our community in ways we had never dreamed of.  We are passionate not only about what we do but more importantly why we do it. We learned how easily we took so many things for granted with our first child and we can now treasure so much more with him as well. We are so lucky!  We don’t focus on the can’t but the can and with that thought process we can do anything.. and we will!  We can’t predict what the future holds, and we undoubtedly worry and stress much more than the average family but at the same time, life has more meaning for us now because of Carter.  In his short life, he has already taught me much more than I could ever teach him!


To say that I can relate to Kim is an understatement.  Our stories are very similar, and her words really struck a chord with me.  Thank you Kim, for opening your heart and sharing your beautiful family with us!  We appreciate ALL that you do!

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.


Sunday, February 2, 2014

You Can't Park There!

Those of us in the disabled community or who have family members with a disability know how important "blue" parking spaces are. We have all felt the frustration of seeing cars parked in them with no visible parking permit. We've been witness to a compact car pulling into the blue spot and the driver hurriedly running into a store because he "just had to pick up one thing!"

We've heard the excuses: "I just had to run in for a minute" or "I'm waiting for someone to come out". That's a good one. Using the accessible parking spaces as a place to sit and WAIT!  I have heard it all. The designated parking spaces are located nearest to the entrances of businesses, and they are coveted. However, for those who need them, they are there for a reason. They provide the accessibility and extra space required to safely unload equipment such as wheelchairs, walkers, and other mobility devices, and to allow the user easiest (and safest) access to the entrance. Just because you couldn't find another parking spot, or you wanted to save time is not a reason to take up one of these spaces. 

BraunAbility is a company that manufactures a full line of mobility products, including wheelchair vans and lifts. They have recently launched a series of "parking tickets" that are to be slapped on vehicles that are parked in accessible parking spaces when they shouldn't be!

I think they are genius.. and was thrilled when they sent me some!!

I can't wait to use these babies!