CP Adult Social

In my work and in my life, I am surrounded by children with special needs. Having a young son with cerebral palsy, I am naturally inclined to advocate for him and his friends and I want to help other families with young children like mine. It is a labour of love, and the rewards are great.

With the challenges we face, I try to focus on the present and not think too far ahead or look too far into the future. It can be daunting, but the reality is that children with disabilities become adults with disabilities.

This weekend, the Cerebral Palsy Association of NL hosted an Adult Social. This event provided a wonderful opportunity for adults living with a disability to meet and socialize with their peers.

As the crowd grew, I realized that there was so much history in the room, with some of the friendships going back fifty years or more. They shared stories about the old times, and reminisced about days gone by. It was incredible to hear some of the stories from their childhood, a time when the supports that we have now simply did not exist. I have to wonder how their parents managed, without the wealth of resources, the support of other families, an active Association, and without knowing all that we know today about a diagnosis of cerebral palsy. I feel like I am a student of the parents who have gone before me, learning from their children who are now grown.

I am inspired by the successes of individuals with disabilities. Many people with CP go to college, live on their own, get married, and have children. It is encouraging to spend time with these individuals and to hear their take on things. Of course, there is a part of me (a big part) that worries about our future. There will always be moments of sadness when I think of what our life will look like as Brennen gets older. There is no doubt that this road will be challenging, but the more time I spend with adults with disabilities, the more comfortable I become with whatever our future might hold.

Children with disabilities become adults with disabilities, and according to what I've experienced this weekend, the future looks bright!

Ten-year-old Brandon joined the band for a few numbers on his accordion, the bodhran and the spoons! He totally rocked it. 

I can't think of a better way to spend a Saturday night!

Happy Birthday, Brennen!

At 4:42pm on Saturday, February 5th, 2005, Brennen entered the world weighing 7 lbs 5.2 oz.

I will never forget those precious moments when I became a mother. I remember reaching out my arms to cradle his perfect body, kissing his newborn skin and feeling the pain of a love so deep, so overwhelming that it cut right to my soul.

From the minute he was born, his mere existence filled a hole in my heart that I never knew was there. Brennen changed me. He opened my eyes to a world full of beauty and uniqueness, and I know now, as mothers do, that watching your child grow is about the most fulfilling thing your heart can withstand.

I remember feeling completely lost and entirely unprepared for what we were thrown into. Tests and diagnoses, therapies and surgeries. I was terrified of what our future might hold and was afraid to even think too far ahead. I worried about his quality of life. I worried about the struggles he would have and the challenges he would face. Would he ever walk or talk? Would he reach certain milestones?

I know now that quality of life is not measured by milestones or accomplishments. It is not for others to judge by what one can or cannot do. If quality of life is based instead on the love and joy that surrounds us, and the experiences and relationships that are nurtured, then Brennen has a quality of life greater than anyone I know. He speaks to me with his big bright eyes and he kicks his little legs with excitement. He exudes joy and has a smile that is brighter than the sun.

While I do still worry about some things, it's been a long time since I've felt overwhelmingly scared or sad. We've got incredible supports, and we are enjoying life and just loving each other. Today, while we celebrate Brennen's 10th birthday, I am celebrating his life. I am contemplating every memory, every emotion. All of the struggles and all of the successes that have brought us to this day.

Ten years is a long time, but I feel like it is just the beginning. 

As we prepare for his future, I look back at how far he has come. My little boy, now ten years old.

Happy Birthday, Brennen!

Almost 10

Brennen will be ten years old next week. A week from today, in fact.

As his birthday approaches, I have found myself looking through old photos, recalling past events and just reveling in the memories we have made over the last *gulp* decade.

Just a quick post tonight to acknowledge these feelings, the enormity of the emotions that come to the surface when I think of how much I love this little boy.

Brennen, I love you, and I love being your Mom.

"When I tell you I love you, I don't say it out of habit or to make a conversation. 

I say it to remind you that you're the best thing that ever happened to me."

Love Local: Juniper Clothing

Juniper is a clothing company based in St. John's, Newfoundland and Labrador.

Their designs take inspiration from our tiny spot in the world. Our natural landscapes and unique dialect are used to create designs that are low-key, different and simply put together.

Launched in the Spring of 2014, the company began with just a few t-shirt designs. Thanks to the support of the local people and local retailers, they have been able to expand their product selection to include new shirt designs, hoodies, hats and art prints. All of their products are North American made using quality fabrics.

Juniper Clothing is a proud supporter of the charity Forests without Borders. A portion of all sales support this organization's initiatives, which are aimed at protecting, conserving and restoring forested lands in Canada and internationally.

 Come on we goes!

Best Kind! 

(And then this happened..)

  

We love their signature "Mountain and Tree" tee!

Juniper Clothing is available at The Outfitters on Water Street in St. John's, PSEUDIO stores across Newfoundland, and online at http://juniperclothing.ca/

Shop local! Support local small businesses and contribute to the well-being of our local community. 

Embrace what makes us unique. Juniper Clothing is doing just that!

Yippee! Wheelchair Seat Protectors!

You guys! Remember way back in 2014 when I was super excited about a new line of Yippee! Sheets - waterproof bed sheet protectors I had discovered for Brennen's bed? (I wrote about it HERE).

The same Yippee! company has just released a new line of wheelchair seat protectors made in ALL BLACK (top & bottom), with a quilted top layer and waterproof bottom layer. They are available in two sizes: Standard (approx. 18" x 16") and Small (approx. 12" x 12").

I was happy to consult with creator and Super-Mom, Nicole Maunder and input on the design phase of this awesome new product!

Yippee! Sheets already carries a line of seat protectors that are available in a range of colours and funky patterns. These would be ideal for a car or other standard chair, but the wheelchair seat protector is designed to be discreet in all black. It is almost invisible when placed on a wheelchair seat!

The wheelchair pad is machine washable and reusable to protect your seat time after time and keep it clean, dry and looking new!

The pad is virtually invisible on Brennen's chair, and can't be seen at all when he is sitting on it.

Thank you, Nicole, for recognizing the needs of individuals with disabilities and their families, for creating such a useful product, and for helping to take some of the stress away from our overly hectic lives.

Visit www.yippeesheets.com to view and purchase.

Reason for the Rink

The Reason for the Rink is a labour of love for Todd and Kim Churchill. Todd has built an enormous (95' x 46') ice hockey rink complete with boards and ads, painted lines, nets, lighting and in-ice logos in their backyard in Portugal Cove - St. Philip's. Todd started this rink project as a fundraiser to raise money for charities associated with the medical conditions of their youngest son, Carter. Carter was born in 2011, and has been diagnosed with cerebral palsy and is profoundly deaf. You can read Carter's story HERE.

Todd says, "My wife and I became very aggressive in fundraising for the charities that are associated with his conditions. We feel that by supporting those charities, we are supporting him and we're not just being passive. We want to be a very active partner in the community and help children like him and do as much as we can for them."

The Reason for the Rink project benefits the following charities: Easter Seals NL, Rainbow Riders - Therapeutic Riding Newfoundland and Labrador Inc., Mazol Shriners, and the Cerebral Palsy Association of Newfoundland and Labrador.

To date, the Reason for the Rink has raised over $100,000.00 for these local charities. Absolutely incredible.

NTV featured a story on the Reason for the Rink in 2013, when Mark Dwyer captured the experience at the rink's first charity game. This feature was named the RTDNA's top sports story for Atlantic Canada in 2013. Click here to view - http://ntv.ca/on-the-mark-reason-for-the-rink/

This past weekend, I was invited to attend the Grand Opening of this season's Reason for the Rink. This was a private event for the sponsors and their families and representatives from each of the supported charities. Also in attendance for the day's Grand Opening was Gavin Will, deputy mayor of Portugal Cove - St. Philip's.

Though it was very cold, the sun was shining and it was a beautiful day on the rink! This was our first opportunity to get Brennen out on the ice in his new sled, and he loved it! I think we will be frequent visitors to the rink this year!

Members of the Cerebral Palsy Association of NL at the Grand Opening of the Reason for the Rink

Todd Churchill with representatives from the four supported charities.

Thank you so much to both Kim and Todd Churchill. This rink project is an enormous undertaking, and you have done an incredible job. We can't thank you enough for your continued support of local charities. You truly are making a difference in the lives of individuals with disabilities and their families.

Visit  http://www.reasonfortherink.com/ for more information, and click on the Rink Cam - Live for 24 / 7 live coverage of the rink!

Tulip Tales: Keeley

I am excited to share this first 'Tulip Tale' of 2015! I couldn't think of a better way to kick off the New Year than with this precious little girl named Keeley. Her mother, Dominique shares her story.

*****

I have a 3 year old daughter named Keeley, who has multiple disabilities and health set backs. She has recently undergone another urgent surgery to install a pacemaker (her 8th time under anesthetic).

Keeley was born in Fort McMurray. When I was pregnant, my placenta calcified, causing her to have asymmetrical growth restriction. Her growth had declined about 2 months prior to being delivered, and at 38 weeks, she was born by emergency c-section. She had a few complications at birth, but nobody was overly concerned. I had been told over and over she was just "gassy" until one doctor thought maybe there was something more going on, as it was unusual for a 5 pound baby to look like she swallowed a basketball! This doctor thought it could be Hirschprung's disease and anal stenosis (a narrowing of the anal canal), as well as protein colitis. It was determined that Keeley's body was unable to digest any proteins, and she was switched to a special pre-digested formula called Neocate).

She was airlifted to Edmonton, where a surgeon examined her. She put a Q-tip in her bum, ripped her open and rudely told me "Well, how big do they expect it to be?"  We were sent away with no answers. I went back and forth to this doctor's office every day trying to figure out why my little girl was so sick and why nobody would help us!  It got to the point where the doctor told us to fly anywhere in the world and maybe someone will help, as she expected that Keeley would be lucky to live another 3 days! So with that, off to Newfoundland we went.

On July 10, 2011 we arrived in St. John's and Keeley was admitted to the NICU at the Janeway. Here, she was diagnosed with possible protein colitis, pyloric stenosis (the muscle that connects the stomach to the intestine had closed shut, and she had essentially been starving to death for 2 months), anal stenosis (what was going in couldn't come out as she had such a small opening), and bifid thumb (2 thumbs on one hand).

A few surgeries later, it seemed like we were getting some of this under control, only to realize that things were still not the greatest. As the months go by and many stories in between, we have discovered some more issues, including 3 spinal defects, 2 heart defects (soon to be 3 as we would find out), breath holding spells, possible seizures, hypoglycemia (discovered when we couldn't wake her up and her sugars were below 1), neuronal intestinal dysplasia and zero motility and mega colon (Keeley's body essentially has no idea that it has a large intestine). Every 2 days we insert a catheter and inflate a balloon and let a feeding bag and saline go through and work for her, however these are becoming unsuccessful and she now needs another surgery to correct the intestinal problem.

We also found out on Christmas morning that Keeley's heart keeps stopping (called sinus node heart pauses). On December 19th, 2014 she had a Medtronic Heart Loop Recorder surgically implanted, to help determine and diagnose her cardiovascular issues. This implant monitors and records the heart rate and rhythm and doctors could analyze the stored information. On December 22, I thought that everything was fine and booked tickets for myself and Keeley to go to Fort McMurray to spend Christmas with my grandparents. It would be my first time spending Christmas with them in over a decade and Keeley's first time ever. We were excited and not thinking anything would go wrong. At 8:00 am on Christmas morning, I got a call from the cardiologist saying that he had received an email and text notification from Keeley's heart implant, and it looked like her heart was stopping.

We changed our tickets and raced back in to the Janeway. The doctors were questioning whether or not it was a rare type of seizure that was making her heart stop. We came back to the hospital again on the Sunday after Christmas for what we thought was to have stitches removed from her previous surgery and to meet with the neurology team, only to be rushed to the PICU and two days later, Keeley had a pacemaker implanted.

The next thing in store for Keeley will be more extensive testing to determine what is the best thing to do for her intestines. We know she has intestinal neuronal dysplasia, but are not sure if that is the full extent of the issue. She may require a colostomy, a cecostomy, or a colon resection, but she will require a lot of testing before either of these can take place.

Keeley has a lot of issues and needs quite a bit of extra care. She is a happy and active kid and loves preschool, however the idea of sending her to a regular school is terrifying to me. I believe that she would benefit from being in a school for medically fragile children with doctors and nurses on site. Newfoundland doesn't have options like this, so we are moving her to a bigger facility in Calgary (Alberta Children's Hospital) to a special school connected with the hospital so she can still be a normal kid and have people around when we are not - people who are trained to notice when things aren't quite right!

As a single mom of a sick little girl, we don't have a lot to work with. I am in the process of selling everything I own to make this happen for Keeley! My only wish is for my child to be happy and healthy and live a normal life like other kids her age.

*****

Dominique, thank you so much for sharing Keeley's story. It is heart-wrenching to think of all that she has been through in such a short time. What a strong little girl, and she is just the cutest! She is very lucky to have such a caring, loving Mom who wants only the very best for her. I wish you both nothing but health and happiness, and I hope that Keeley continues to thrive. With you looking out for her, she's got an incredible advantage! Here's to a Happy, Happy New Year!

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

Thanks!
-Julie