Saturday, June 21, 2014

School Days

As the end of the school year approaches, I am reflecting on Brennen's school experience thus far.

I have to say that we have been very fortunate. Brennen has been blessed with some wonderful teachers and incredible teacher's assistants. He is nearing the end of Grade 2, and I just can't believe the time has gone by so quickly.

It hasn't all been easy. I remember Brennen's first day of Kinderstart, when I brought him in to meet his teacher and his classmates for the very first time. I pulled up at the “big school” and parked in the blue spot nearest to the entrance. I could see other parents excitedly walking with their little ones into the main entrance of a school that looked much too large for these tiny little children. As I pulled down the ramp at the back of my vehicle, I could feel the eyes of curious onlookers watching my every move. It is something that I've done hundreds of times without even thinking about it, but on this day, I was acutely aware that our way of doing things was very different from the majority of others.

I didn't get to experience many of the typical 'first day of school' stresses - the nervous child, holding tight to Mommy's hand, the tender reassurances that everything was going to be just fine.. that it was going to be FUN!  We didn't talk about the friends he would meet, the games he would play, or the many new experiences that lay ahead of him. Instead, I tried to keep it together while I felt like I was actually dying inside.

I remember carefully picking out Brennen's outfit for his first day of school, then quietly realizing that no one would be looking at his clothing. Everyone would be looking at his wheelchair. My fear was that no matter how cute, how happy, or how excited he was, Brennen was going to be seen as the 'kid in the wheelchair', and that fear was about to become a reality.

On that first day, parents were allowed to stay in the room with their children. Brennen's classroom was beautifully decorated, and full of tools and toys, props and materials, all ready for the new crop of eager learners. The kids were seated in small groups at child-sized tables that had baskets of play-dough laid out, just waiting to be manipulated by tiny hands. The parents all stood back and watched their children interact with each other and explore their new environment. I stayed with Brennen, helped him feel the play-dough and I talked and joked with him so that he wouldn't feel left out. I could only keep that charade up for so long. He was being left out. No one was talking to him, and the parents were staring at him with sad eyes, as if to say “That poor little boy”. They would catch my eye and quickly look away, obviously at a loss for what to say or how to interact with me.

After a short time, the Guidance Counselor came in and sat with me and asked me to let her know when I was ready to visit the room downstairs. I quickly told her that we were ready now!

When we got to the “Special Needs” room, it was like breathing a huge sigh of relief. I knew instantly that this was where Brennen needed to be, that this is where he belonged. The teachers here were warm and welcoming. They were excited to see us and they went above and beyond to make Brennen feel included. No one stared. No one looked at me with sad eyes. They didn't feel sorry for me. They were genuinely interested in meeting my little boy, and they wanted to get to know him. 

Brennen had a great kindergarten year, and made some wonderful friends that he will go through school with. The way it works for us is that Brennen spends most of his day in the special needs room, but joins his regular class for things like gym, music, choir, field trips and outings. In the special needs room, there are 7 or 8 children from grades K – 6. There is a wide range of abilities and developmental levels among those children, but the teachers are amazing and work with each child to help them reach the goals outlined in their individual education plans. 

Grade One was a challenge for me because that was the start of full days. It took me a while to get used to not being with Brennen for such a long period of time every day! When I would think of sending him off to school every morning, wondering what he was doing for the seven hours that followed, my chest felt heavy and I'd lose my breath. We had to be sure that Brennen was going to eat his lunch at school, which meant that it would have to be the same person giving him his lunch every day, or it would never work. I am so thankful that Brennen has a wonderful Teacher's Assistant who loves him like her own. Brennen gets lots of attention and cuddles and love at school, and really, that is what I want for him. I want him to be happy and to be surrounded by love. That is all. Anything beyond that is a bonus. 

Grade Two seemed to fly by, though it was a short year for Brennen. He didn't start school until the end of October, since he was still recovering from the surgery that he had over the Summer. It didn't take him long to get back in the swing of things, and his teachers and classmates were excited to have him back. I have great communication with his teacher, which is absolutely essential. She will text me with serious concerns, like if he seems upset, or to let me know that he's had a seizure. But occasionally I will receive a message like I did last week - 

It was Sports Day, which always has the potential to be a terrible day for our special needs kids. After lunch, Brennen's teacher sent me a photo of him doing a potato sac race - full on in a potato sac, being pushed in his wheelchair by one of his classmates. She said, "Brennen is having a ball today! During one of the races, all of the boys in his class jumped up and followed along cheering his name. I don't have a picture of that because I couldn't see through the tears!

Like I said, Brennen has been blessed with teachers who love him. I can't thank them enough for all that they do, not just for Brennen, but for our family. His well-being is my number one priority, and I can honestly say that I don't worry one bit from the time he leaves on the bus in the morning, to the time he arrives home in the afternoon. I know that if something is wrong, I will be notified, and if I don't hear anything I know he is having a great time!

Starting school can be daunting for parents of children with special needs, but we have to be open to the idea that school can be a wonderful thing for our kids. The socialization and interaction with their classmates and peers, and the world of experiences that will be opened up to them is invaluable. It took my heart some time to acclimatize to the fact that Brennen would be ok without me. That is perhaps the hardest part. I miss being with him. 

I know some families struggle with the idea of sending their children off to school for the first time, and even now, my stomach does a flip-flop just thinking about it, but we must listen to our heart and pay attention to all of the quiet cues our children send us to tell us exactly what they need. Believe in your motherly instinct, listen to your own voice. We make decisions for our children based on what we feel is right for them and for our family. Nothing is ever set in stone and everything can be reassessed at any time.

All of that being said.. school is almost out!  Enjoy the Summer holidays!!!

Tuesday, June 17, 2014


Steptember - Every Step Counts 

How many steps did you take today? 

Support the Cerebral Palsy Association of Newfoundland and Labrador!

Challenge yourself to take 10,000 steps a day for 28 days in September!

Did you know the average office worker takes just 2,500 steps a day? It’s no wonder so many of us aren't as fit as we’d like to be. It’s pretty hard to get in shape sitting down all day – so why not challenge yourself and your friends, co-workers and family members to take 10,000 steps a day for the whole month of September!

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Steptember website.


Each participant is challenged to walk 10,000 steps a day and as a team virtually climb the highest peak on each continent. Each team will have seven summits to climb during their journey. The number of steps it takes to reach the top of each summit is directly related to height of the summit. Each participant will reach all seven summits and the top of their virtual mountain by the end of Steptember if they reach their target steps per day.

 Steptember is an easy and fun way to get fit while raising funds for Cerebral Palsy Associations across Canada. 

Watch this video to learn more!

Saturday, June 14, 2014

Tulip Tales: Amber

Amber has a condition called I-cell disease, also known as Mucolipidosis II. 

I-cell disease is a rare, inherited, progressively debilitating disorder. The most common features of the condition are developmental delay, coarse facial features, joint limitations, and skeletal abnormalities. There is no cure for I-cell disease.

Anybody may be a carrier of this gene, but it is only when both parents are carriers that there is a 25% chance their child will be born with this disease.

It is believed that every 1/90 Newfoundlanders are carrying this gene and may not know it. The highest concentration of the gene worldwide is thought to be in Saguaney Lac Saint Jean, Quebec, with 1/39 carriers.

 Amber's Mom, Pauline tells her story. 

To begin with, we had some knowledge about I-cell disease, and knew that my husband may be a carrier for this gene. Before getting pregnant, we consulted with Genetics to determine what the risk might be. Honestly, we were not worried at all and we looked forward to having a baby. Everything turned out to be fine, and we had a healthy baby girl!

Four years later, we got pregnant again with Amber. This time, I had an amniocentesis, which came back fine, so again we had no worries.

When she was born, the nurses noticed that Amber's appearance was different from other newborns and brought it to the doctor's attention. That was at the Carbonear General Hospital. The doctor would not tell me herself, but sent a nurse who was very blunt and straight to the point. I will never forget that moment. I had Amber in my arms and the nurse said, "There's something wrong with your baby." I said, "What do you mean, is she going to be ok?'  She replied, "Now, Pauline..."

I was sitting up in bed and my arms started to drop. She asked "Did you want me to take her?
I said yes and handed her over. For a sick, twisted second, I thought I was giving her back. For good.

My thoughts were racing and I remember thinking that I needed to get the IV out of my hand.
I had to walk, no, run away!!! It was a scary moment. Life changing.

The room was filled with panicking family members talking loudly and crying. All I heard was noise. Before I knew it, there were ambulance attendants ready to take my baby to the Janeway Children's Hospital in St. John's.. without me.

The nurse asked me what I was going to call her. I said I was thinking about 'Amber'. 

She said "Amber what?" I thought quickly and said "Amber Allie".

She said "Do you want to take a picture with her before she goes?

All I could think was "Oh my God. She's gonna die". I was in total disbelief, confused, and shocked.

I could hear the noise of everyone in the room. My sister saying that they were making a mistake. She was angry. I was lost. 
We stood around Amber before she was wheeled into the ambulance. We held hands and started to pray. 

That night was the longest ever. 

The next day I got to the Janeway, and I remember almost running through the halls to get to my baby. When I got to her room I took her up in my arms right away. Looking at her, she looked perfect to me, but now looking back, I can see what they saw.  

"Just take her home and enjoy her", they told me.

Children with Mucolipidosis type 2 typically do not walk or talk. Their life expectancy is 5 - 8 years. 

We were devastated. I could not come to terms with the fact that I would have to bury my child. I could not wrap my head or heart around it. I just knew I would not be able to go through with it. I would stare into Amber's blue puffy eyes. It was all wrong. This had to be a mistake.

At nine months, Amber developed two hernias. Dr. Price at the Janeway operated and things went smoothly except for the intubation. It was on the third attempt that the anesthesiologist finally succeeded to intubate Amber. She came out of surgery and healed without any major concerns.
The anesthesiologist visited us after the surgery and explained how difficult it was to intubate her and because of that the surgery almost did not go ahead. He told me that Amber's airway was only the size of the tip of a pen.

Adjusting to this new life didn't happen overnight. We knew very little about I-cell disease, so we didn't really know what to expect. That was a journey in itself. But Amber has flourished into a beautiful little girl who has enriched our lives in so many ways! She is quite active, which is not typical of an I-cell child. She gets around on her own very well. She works very hard to do so, which shows us how determined and strong she is.

Amber started doing physiotherapy, and I learned how to do some exercises and stretches in different positions with her. At about 17 months old, Amber began to gain some strength. She made more efforts to roll and move. As the weeks went by, Amber sat up on her own. Then sat on her knees. Then pulled herself into a standing position.
She does not walk on her own, but if you hold her hands she will stand and walk with assistance. She can use a walker. She can crawl. She can stand to the coffee table, go around it and get back down on her own. She can pick up items, food, etc. She loves to push things around on the floor such as boxes and other large objects that she can use to help her to get around. She is pretty smart. Amber knows many words and knows how and when to use them. She is very comical and loves to make people smile and laugh.

I-cell has taken its affect on Amber, however. At 6 yrs old, she weighs only 21 lbs. Her back and chest have rounded more in the past year, and it affects her lungs and breathing. She tires easily. Her teeth were removed because they decayed and began to fall apart (a common symptom of her condition).

Amber is followed by a Cardiologist at the Janeway every 6 months to keep tabs on the function of two valves in her heart. As of now they are functioning well, and that's all that matters. 

Amber does not attend school because her pediatrician recommends not to, due to the fact that Amber's immune system is weak and she can easily pick up viruses. For Amber, a cold can quickly lead to pneumonia and lengthy hospital stays.

Amber loves attention, as all kids do, I suppose. She is very social with adults and children. She is a happy little girl, full of personality. She has many friends and lots of support from our hometown and surrounding communities. I-cell disease has slowed her down, but hasn't stopped her from doing the things she loves. We love her more than words can say.

Pauline, thank you for sharing your sweet little girl with us! Amber is adorable, and you are certainly doing everything you can to ensure that she has a full and happy life! I'm sure that it can be difficult learning how to deal with such a rare condition, but you have embraced it, and you have been a huge help for others in similar situations.

Pauline created a support group on Facebook called "Support Group for I-Cell Disease / Mucolipidosis II"  
The group has close to 800 members worldwide.

"I formed this group for parents and families of children with ML II / I-cell disease, past or present, as a form of support to one another. We share stories and personal journeys, browse one another's pictures and become friends or as we call it 'ML family'. It gives me so much support and comfort knowing that I am not alone. That other moms are experiencing the same things that I am. Most of us on the group are very close. We speak by phone, Facebook messages and email.
If your life has been touched by a ML child & their courageous family, or you just want to show your support, please feel free to join. My name is Pauline & I am the mother of a beautiful little girl who has ML II/ I-cell disease."

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.


Tuesday, June 10, 2014

Parent Support Group

As part of my role with the CP Association, I will be helping to promote and enhance our Parent Support Group.

The Cerebral Palsy Association of Newfoundland and Labrador offers a support group that gives parents the chance to meet and share their knowledge and experiences with others facing similar challenges.

As a parent of a child with special needs myself, I know how important it is to connect with others who can relate to what you are going through. No one truly understands the physical, emotional, social and practical challenges of parenting a child with a disability better than another parent.

Every child is a gift, but raising a child with cerebral palsy is a unique responsibility. Through our support group we socialize, share ideas and insights, and offer support to other families raising children with CP and similar disabilities.

CPANL is putting together a new network and database to connect our families - please help us!

If you are interested in finding out more about our Parent Support Group, or if you would like to be added to our list, please send a quick email with some brief information about your family to:  (All information entered is kept confidential, and is not posted publicly).

 This photo was taken on one of our "Mom's Group" excursions outside of the city. We always have THE BEST time!


Friday, June 6, 2014

"Home Care. It's Everyone's Concern."

Brennen and I are featured in a new ad campaign called Home Care, It’s Everyone’s Concern.
This campaign aims to increase government funding for home care, and bring attention to the vital service that home care workers provide to thousands of families in Newfoundland and Labrador. The ads will be shown on CBC and NTV, as well as in theatres. I recorded the radio ad as well, which is being played on multiple stations.  Listen HERE!

I hope that in addition to its goal of increasing funding to home care workers, this campaign will also open a discussion around home care and the need for it to be readily available to all families who require the service.


For Immediate Release:
Friday, June 6, 2014

NAPE Hosts Home Care Workers Conference

Public relations advertising campaign to be launched 

ST. JOHN’S, NL – Home care workers, who are members of the Newfoundland and Labrador Association of Public and Private Employees (NAPE), are meeting in St. John’s this week. The Home Care Worker Conference, hosted by NAPE, is being attended by over 65 home care workers from agencies across the province. The conference is being held Thursday, June 5 and Friday, June 6.

“This conference is about bringing home care workers together to educate and share their experiences in the home care field,” said NAPE President Carol Furlong. “This conference is also an important opportunity for these workers to prepare for collective bargaining negotiations for this group which are set to begin in the coming weeks.”

“Home care workers provide an invaluable service to the people of this province and play a crucial role in providing care and support to some of our province’s most vulnerable. Despite this reality, these workers are making slightly more than minimum wage,” continued Furlong. “Government must give home care the funding it deserves. This will be our message in the upcoming negotiations and this conference will help us reach that goal.”

Today, NAPE will also be officially launching a public relations advertising campaign at the conference. The ‘Home Care, it’s everyone’s concern.’ campaign brings attention to the vital service home care workers provide to thousands of families and their loved ones across the province and calls on the provincial government to increase funding for home care.

The 2014 NAPE Home Care Conference will feature workshops, guest speakers, and panels covering a wide array of important home care, bargaining, and labour issues.

Wednesday, June 4, 2014

NL Kids Expo

The 3rd Annual NL Kids Expo will take place this coming weekend, June 7 and 8 at Techniplex in Pleasantville, St. John’s.. close to Quidi Vidi Lake.

The NL Kids Expo is an interactive, informative and fun showcase for parents, grandparents, caregivers and most importantly, KIDS!  The expo is a central gathering place for all businesses who offer products and services to the children of Newfoundland and Labrador.

There are over 80 exhibitors confirmed for this year’s event, already making it the biggest yet!  The kids zone area is huge and there are 2 stages that will be in full swing throughout the entire weekend!  On those stages you will see everything from Newfoundland Reptiles, NL Jungle Pets, magic shows, musical performances, kids zumba, educational sessions, dance shows and so much more!  You can view the full listing of exhibitors HERE and a complete schedule of events HERE.

Event creator, Gord Delaney, has poured his heart and soul into this event and has gone above and beyond to ensure that it is a fun-filled experience for children and families. I was fortunate enough to meet Gord last year when he helped arrange Brennen's trip of a lifetime - to visit Santa at the North Pole!

Since then, he has been following my blog and he so graciously asked if I would write an article for the program for the NL Kids Expo! I was more than happy to, so when you visit the Expo this weekend, make sure you pick up a copy of the program!

The Techniplex is a wheelchair accessible and stroller friendly event space with 15ft aisles and for the first time ever, all exhibitors, activities and events are on the one level!

I look forward to taking Brennen to the NL Kids Expo, and I look forward to working with Gord on several other upcoming projects!  Stay tuned!