Saturday, April 7, 2018

Jooay: Connecting Children and Youth with Disabilities to Leisure


This past September, I attended a Brainstorming Event: "Working Together to Promote Participation", held in Montreal (see HERE). Our discussion focused on the best ways to promote leisure participation of children with disabilities and to engage families in the community.

The meeting was hosted by the Jooay Team, lead by Dr. Keiko Shikako-Thomas, Canada Research Chair and Assistant Professor at the School of Physical and Occupational Therapy of McGill.

"Participating in sports and other leisure activities is an important part of childhood development; however, accessing appropriate activities and information is a challenge for children with disabilities. We created "Jooay", a mobile and web-based app, to provide families with information about appropriate leisure activities available in communities across Canada."

The Jooay App was launched in Spring 2015 to overcome the lack of access to information about inclusive leisure activities, and to create an online community of support through a mobile-health solution. Jooay is an App where parents, youth and other users can exchange information, rate and comment on activities, creating a community and building networks around adapted and inclusive leisure opportunities.

Participation in sports and other leisure activities is critical to the physical and mental health of all children, and essential to their social development. However, it has been found that engagement in leisure activities is low for children with disabilities compared to peers of the same age, both in terms of frequency of participation and diversity of recreational activities in which they partake. Families, healthcare professionals and educators have indicated that the lack of information about existing resources is a significant barrier to children’s participation and that a peer mentorship program could help facilitate this process. To address this issue, the Jooay App was created by Dr. Keiko Shikako-Thomas and Dr. Annette Majnemer, faculty members at the School of Physical and Occupational Therapy at McGill University.

I believe that participating in recreation and leisure activities is important to all individuals, regardless of ability. It is not only important in maintaining fitness, but it is also a means through which people have fun, meet new friends, and develop skills and competencies. As a parent of two children with disabilities, I also know how challenging it can be to find activities that allow my children to get involved and have fun. My son, Brennen has been involved in a number of adapted recreational programs over the years, and while our goal, always, is to provide him with meaningful life experiences and encourage social interaction, having him involved in sport and other extracurricular activities has increased the quality of life for our whole family.

I am now the Jooay Ambassador for Newfoundland and Labrador, and will be working collaboratively with the Jooay Team to help identify adapted leisure activities, to provide information about Jooay and adapted activities to children and families in our region, and to actively help promote participation for children and youth with disabilities across Canada.


Please contact me if you would like more information on the Jooay App, or if you know of an inclusive or adapted activity that can be added to our database. I would love to hear from you!

This project is part of the Child-Bright Network: A Canada-wide, patient-centered research initiative, including 12 research projects to improve the life conditions of children and youth with brain-based disabilities and their families.

Jooay is part of the Childhood Disability LINK community.

Saturday, March 31, 2018

The Great Accessible Egg Hunt

It seems like everyone in the world is talking about Spring, excited about it's warm temperatures and pastel colours, bright sun, blue skies, t-shirts and tennis shoes. Here in Newfoundland, Spring is not really a season that we have. It's still freezing cold outside, and we'll be wearing winter coats and boots for another few weeks yet. We typically have snow storms well into Spring, and while the past few days have been pretty decent, we are not out of the woods yet. Seeing the stores full of gardening supplies, sun hats and open-toed shoes is just a tease, but it makes me hopeful that warmer temperatures might eventually come our way.

I do love all things Easter, however - the chocolate bunnies and Whopper eggs, crisp white dresses, fresh tulips and lilies, and cheap plastic eggs with tiny toys inside. I love that crap.

When Brennen was younger, I never really made a big deal about Easter. I mean, I would put together a basket for him, filled with peeps and kinder eggs, but I knew that he couldn't open them, couldn't eat them, and couldn't play with the toys inside. Brennen wouldn't look for his Easter basket, or hunt for eggs. He wasn't able to, and there was a sting to that, like I was being robbed of one of the joys of parenting that everyone else was taking pleasure in. It was an expectation of mine - just one of the many ideals that were woven throughout everything I thought I would get to enjoy with my child when I became a mother, and it was hard to accept that some things were just not going to go as planned for us.  

It took me a while (..years) to understand that having a child who experienced the world differently would also cause me to experience things differently, to expect differently, to process and perceive the world differently, but once I came to that realization, everything seemed to make sense. I settled into my role as a "Special Needs Mom", and began to flourish right along with my child.


This weekend, we took our kiddos to an Accessible Easter Egg Hunt at the Manuels River Interpretation Centre. This very special egg hunt was designed specifically for children with mobility challenges, and of course, was open to their families and siblings. Easter eggs were hidden along the trail at various heights and levels, some with balloons tied to them so they were easy to find!

This was our second year doing the Accessible Egg Hunt, and we had such a great time! The trails are hard packed and well groomed, making it easy to push a stroller or wheelchair, and the staff of the Interpretation Centre were super enthusiastic and excited to make this the best day ever. We especially appreciate the time and effort that went into ensuring that this was an enjoyable day for all families! 

Here are some photos of our Easter Egg Hunt!


Happy Easter from our family to yours! However you celebrate, I hope everyone has a beautiful weekend with the ones you love!

Friday, March 30, 2018

Your Voice Matters

Your voice matters:
CP Canada Network Survey

 



CP Canada Network is in the process of developing a new website. The goal of this website is to provide up-to-date information about cerebral palsy (CP), and to promote connections within a national community. Although we are aware of the generic information found online regarding CP, we understand that resources and services vary from one province to the next. We hope to provide province-specific information. This survey is to help us better understand how you are currently accessing information about cerebral palsy, what type of information is most sought out, and what type of information is most difficult to find.

The Cerebral Palsy Canada Network (CP Canada Network) would like to invite you to respond to a survey about what families of children with CP, and adults with CP would like to know in terms of services, programs and general information. We also want to understand the types of services they use, the costs of these services, and what their service needs are.

This survey is part of a research project called "The Childhood Disability Communication Hub". Information obtained from this survey will help us in selecting the most appropriate information to be included on the CP Canada Network website, and to better understand the scenarios of service utilization and needs for children and adults with CP in Canada.
Your participation is very important!

Please complete the survey by following the link below:


If you would prefer to respond to this survey by phone, you can contact Jinan Zeidan, the postdoctoral researcher who is working on this project by email, and she will contact you to schedule a call at a time that is convenient for you. Please email Jinan at: Jinan.zeidan@mail.mcgill.ca

For more information on this project, please contact Jinan Zeidan (Jinan.zeidan@mail.mcgill.ca) or Dr. Keiko Shikako-Thomas (keiko.thomas@mcgill.ca)


https://neurodevnet.med.ualberta.ca/surveys/index.php?s=KTDJXDTH99

Thursday, March 22, 2018

Rainbows for Sammy

The Stella & Dot Foundation was established by Stella & Dot in 2010 to engage and inspire the community to affect positive change in the lives of women and their families. In addition to their year-round global charity partners, Stella & Dot also donates to Autism Awareness Month each April. To date, the Stella & Dot Foundation has donated over $2.7 million worldwide to causes important to their community.

You guys know how much I love my Stella and Dot! Not that I ever really needed a reason to purchase one of their cute accessories, but I do know that shopping can be even more rewarding when your purchase helps out a local charity.


My friend, Pamela is a Star Director, Founding Leader, Mentor & Personal Stylist with Stella and Dot.
She is also an aunt to a very special little boy named Sam.

Pam writes:

"Anyone who knows me, knows all too well I love my family and all my sweetHART nephews that fill my life with so much joy and happiness. One of those boys in particular holds a VERY special place in my heart and his name is Sam Hart (aka Sammy or Sam the Man) - my gorgeous 7 year old nephew!!! Because of my love for Sam and because of my love for giving back, again this year I will be fundraising on behalf of the Autism Society of Newfoundland & Labrador. And again, I will be doing this in Sam's honour - my 3rd year of "Rainbows for Sammy"!

This year I really want to make a bigger impact and am on a mission to donate a minimum of $1000 to the ASNL (I donated $700 and $750 in 2016 and 2017). For this to happen, between now and the end of April, I need to sell at least 150 of our adorable new Unity wishing bracelets and host a minimum of two style sessions where I will donate 100% of my commissions from sales at these events."

This is where we are looking to YOU for support!!!

* Contact Pam (email pamela.meester@gmail.com) or comment below if you would like to pre-order a bracelet or two or three!
* Accept Pam's challenge to sell 10 bracelets in March and as a thank you, she will gift you one for FREE!
* Partner with Pam in hosting a fun Autism Awareness 'Shop for a Cause' trunk show (in home or online) with your family and friends and she will donate all of her commissions from your event to ASNL.

Easter and Mother’s Day are just around the corner, so the timing couldn’t be better!

These bracelets are super cute, and would make a great gift for teachers, friends, family members, and anyone touched by autism. The brilliant colors unite into one prismatic rainbow, and act as a reminder to stay united and inclusive in all that you do.

Share this post with your family and friends to help spread the word and show your support for The Autism Society of NL, and families living with autism in Newfoundland and Labrador!

The Autism Society of Newfoundland and Labrador (ASNL) is a provincial, nonprofit, charitable organization dedicated to fostering the development of individualized, lifelong, community-based supports and services for persons with autism spectrum disorder. ASNL is committed to the promotion of acceptance, independence, productivity and opportunities for inclusion in all facets of life for persons with autism spectrum disorders and their families.

Thursday, March 15, 2018

March Madness

Early in the New Year, Andrew and I got out for a skate on Virginia Lake with all three of our children, and it was one of those experiences we will remember forever. I am always a little skeptical of how days like this will go, especially when getting everybody dressed, and the bundling with all the layers seems to take forever, but it was magical. We had the perfect weather conditions, the perfect ice surface, the perfect outdoor fire, the perfect day.


And we were looking forward to many more days full of wonderful outdoor winter activities just like this one! We had borrowed a sledge from Easter Seals with the best of intentions to take our little ones to a family skate at the indoor double ice complex, and I had big plans for Andrew and I to spend every cold, crisp day outside pulling our children in sleds through the snow. It was going to be great!

Until our winter activities started to look more like this:


Honestly, this cold and flu season has really been kicking our butts. Our girlie was admitted to the hospital several times last month with a series of pretty terrible respiratory infections. We spent a total of 13 nights in the hospital, watching the monitors and keeping a close eye on her oxygen levels. It's been going around, and all of us had some form of a cold, but with her weakened immune system, everything just hits her ten times harder than it does the rest of us. To be honest, having her in an isolation room at the hospital was safer than being at home, where the rest of us were sick as well.

It's been an intense few weeks. Our new house is not yet ready, so we are still staying with my parents. That means there's been seven of us in the same house breathing cold germs on each other. Not ideal. 

Our girl seems to have turned a corner this week, and is on the mend, thankfully. We are hoping to be able to get out and enjoy the last bits of winter while there is still snow on the ground and everyone is feeling well. Our long winters in Newfoundland are so much more bearable and enjoyable when you can get out and take advantage of the beauty of our natural surroundings.


These past few weeks have been even more emotionally charged because our littlest babe has just transitioned out of our home and in with his new adoptive family. This requires it's own post, and I am working on that, I just need a little time to sit with my thoughts and feelings and process all that has happened over the past couple of weeks. It's been a wild ride, let me tell you.


As emotional as it's been, seeing our children happy and healthy and thriving in this life helps me confidently say, it is so worth it. Every day is an adventure, and some days are complex and painful and really damn hard, but we are grateful, and wouldn't trade this path for any other.


 “Life is amazing. And then it's awful. And then it's amazing again. And in between the amazing and the awful, it's ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That's just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it's breathtakingly beautiful.” - L.R. Knost

Friday, February 23, 2018

I am Raising a Readasaurus!

Last summer, our family participated in the TD Summer Reading Club, which I wrote about HERE. I was excited to know that our local public libraries have put great effort into being more accessible and accommodating to people who experience reading in different ways. They have a good selection of audio books available, as well as print materials in alternative formats, such as e-text and braille.

We recently received another package from the CNIB, that included our very own Readasaurus Kit - a fun and practical tool to help develop essential early literacy skills in children with vision loss.


Brennen has cortical visual impairment (CVI), which means that he has a decreased visual response due to damage to his brain. For Brennen, it is not an issue with his eyes, but more an issue with how his brain interprets visual input. CVI is a brain problem rather than an eye problem, and it is common in individuals with cerebral palsy.

Our girlie, on the other hand, has no vision, and we are constantly searching for ways to stimulate her and to enhance how she experiences the world. Sighted children often learn by watching and imitating, but children who are blind or partially sighted need hands-on, active learning opportunities.


The Readasaurus Kit was developed by the CNIB with input from early intervention specialists, teachers, rehabilitation workers and library staff as a fun tool for parents and children. The kit contains a Family Guide outlining the importance of literacy and family story time, as well as highlighting the types of books to share with children with vision loss.

When I opened our package, I was excited to dive in to the materials, which included braille stickers for common words that appear in many books for kids, and an activity book of "Words to see, touch and hear". There was also a magnifier and braille ruler, some shape stickers and magnets, a package of Wikki Stix, and some glow-in-the-dark "braille is fun" wrist bands!

What I love about this kit is that while it includes lots of fun activities for our children, it is also focused on giving parents information about how to best help them learn. There are ideas on how to teach your child to listen, how to help them gather information about the world through touch and movement, and strategies to help your child collect, organize and understand information.

I am so excited about this! Like I said, Andrew and I are eager to find ways to help our children learn and explore, and to offer them new ways to enrich their lives every day. We had gotten into a bit of a routine with Brennen, after thirteen years of figuring out what works and what doesn't work for him, but with two little ones in the mix, our life is in constant motion so I am grateful for resources like this one that push us to get creative and try new things.

Our girlie just loved the Activity Book. We spent some time on the tactile pages, letting her feel the numbers and letters at her own pace before moving on to the next one.


We then used finger paint on the colouring pages! I love that the lines of the pictures are raised, creating a textured border outlining the images.

 

Our kit also included a disk with three audio stories from the Dolly Parton Imagination Library, that Brennen enjoyed listening to on his headphones.



We have been having a great time with the activities included in the Readasaurus Kit, and I am excited to try some of the ideas suggested in the Family Guide, like how to adapt or modify existing books, and how to make our own books with textures and tactile elements. The guide also contains many helpful links to online resources specific to promoting literacy in kids with vision loss.

Parenting children with special needs is a constant learning process, but it is so incredibly rewarding. Our children have changed our lives in so many positive ways, and we will continue to invest our time, love, and energy into each of them, celebrating their accomplishments and supporting their unique needs. It is an honour and a joy to watch them develop, and with help from organizations like the CNIB, we will continue to grow and learn right along with them.

Sunday, February 4, 2018

You Must See This Play!


Earlier this year, I attended a stage reading of "Crippled", a play in development by playwright Paul David Power. (I wrote about that HERE.) It was such a powerful and emotional performance. I fell in love with the story and the characters and just knew that this play was going to be something special.

“Crippled” is about Paul’s experience living with a physical disability since birth as well as dealing with grief after the death of his partner. The piece is designed to show that a disability does not define a person’s overall identity - there are many facets to a person and physical difference is just one component. “Crippled” shows rather than tells the importance of diversity, understanding and acceptance. It is unlike any other work dealing with disability currently on our provincial theatre scene.

Paul has been developing "Crippled" for two years, and has been successful in securing a grant from the Canada Arts Council’s Cultivate Grant Program – dedicated to supporting deaf and disability arts in Canada.

This past August, a working version of "Crippled" was performed at the Fundy Fringe Festival in Saint John, NB. This presentation received 5 star reviews and went on to capture the award for Outstanding Production at the festival!

I am thrilled to now be on the production team for "Crippled". Watch this quick video, to see why this production means so much to me!




"Crippled" is premiering at the historic LSPU Hall (Resource Centre for the Arts) here in St. John's on Wednesday, February 7th, and running until Saturday, February 10th. Tickets are available now! Click HERE to purchase!

The incredible team at Power Productions is raising the bar when it comes to theatre accessibility in Newfoundland and Labrador. It is Paul's hope that “Crippled” will not only entertain, but also inspire discussion and action to expand the diversity of our local theatre scene for artists living with a disability. Historically, in our province, accessibility to events, including the arts, has always come as an afterthought. A priority of this production is to play a leadership role in demonstrating how a community event can be truly accessible.Crippled” will include such access supports as ASL interpreters, audio description, pre-show sensory set visits, and extra space beyond the norm for wheelchairs and other mobility aids.

ASL interpretation is available for the 8:00 pm shows on February 7th and 10th. Audio description is available for the show on February 9th at 8:00 pm, as well as February 10th at 2:00pm. This matinee is also a relaxed, pay what you can performance.

For more information about the accessibility accommodations for "Crippled", check out the Accessibility Guide that was developed in partnership with InclusionNL.

I truly believe this is a performance that everyone should see. Not only those in the disability community, or the LGBT community, or the arts community, or the whatever community. "Crippled" tackles hearty issues relevant to all of us as human beings. Paul tells his story through soulful and carefully selected words, hiding nothing and expressing his true creative self. In doing so, he removes all barriers, labels, and stigma, and generates meaningful conversation around the themes of inclusion, acceptance, prejudice, loss and mental well-being.

As you know, I am eager to support those who strive to make things better for people with disabilities, and even more so, I am happy to support people with disabilities who are striving to make things better for themselves, but Paul is not just a 'disabled actor and playwright'. He is a talented artist - a creative force who is passionate about his work and he has an incredible power to make people feel deeply.

I'll stand behind anyone who does that.

For more information, visit www.crippled.ca

Wednesday, January 10, 2018

The Seahorse Salon

Just before Christmas, Brennen had the wonderful experience of getting his first (ever!) haircut in an actual salon! We have always had a friend of ours come to the house to cut Brennen's hair (Thank you, Janet!) It started when he was just a baby, with his very first haircut, and she has continued to come to our home each time Brennen needs a mop chop. We are fortunate to have her, and it certainly has been the most convenient option for our family, but the reality was that we didn't actually have many options, until recently.


The Seahorse Salon opened a few months ago on Harvey Road, and we were thrilled to learn that they offer a wheelchair accessible space! We wheeled up the ramp to the front door, and once inside the salon, wheeled right into place in front of a full-length mirror. Easy! Brennen was so excited, and everyone was super accommodating and legitimately happy to see that he was having such a great time.

Brennen is almost a teenager (I know! Ouch!) and so it was time for him to have a funky haircut. His hair is super thick and curly, and it is just the best. Salon owner and stylist, Jenn Ghaney is an expert on curly hair. She gave Brennen a super cool fade, leaving the front longer so that his curls can do their thing. I died.


Brennen was very happy with his haircut, and was quite pleased with his reflection in the mirror! 


Everyone has the right to access services in their community, and while it might not seem like a big deal to some, the ability to roll into a salon for a haircut or to engage in other self-care activities is meaningful to a lot of people. We had such a great experience. Jenn was amazing with Brennen! She carried on with him, joked with him, and made him feel (and look) like a million bucks! I couldn't have asked for anything more.

Brennen's disability presents challenges that we are continually finding ways to support and overcome, but it does not limit him from leading a full and happy life. Everything I want for my child is rooted in the belief that every life holds value, and in that way, Brennen is just like any other kid. He thrives on new experiences, making memories, going on adventures, building friendships, and having fun. We are so thankful to local businesses, like The Seahorse Salon, who are open and accepting, and who make strides to create a more accessible and inclusive community.

 
The Seahorse Salon is waiting for you! Find their hours of operation here, or email info@seahorsesalon.ca to make an appointment.

Sunday, January 7, 2018

Tulip Tales: Jade

Happy 2018, everyone! I'm not much of a New Year's resolution girl, but I do believe in optimistically moving forward - feeling gratitude for the wonderful people in my life, and holding a deep appreciation for everything we have been through to get us to this point.

I am so happy that my first post of this new year is a Tulip Tale! 

I was recently connected with another Mom named Julie, and our name is not the only thing we have in common. When we were first introduced, Julie was spending some time at the Janeway with her sweet baby girl. Julie has been very open in sharing her daughter's story, and I am thrilled that she was willing to share it here on my blog as well. Julie and her family have been through a lot this past year, but she is strong and she has a beautiful, positive attitude. Sometimes, life really tests us, but there is a lot to be said for acknowledging our grief and pain and moving forward with courage. 

I believe that sharing our stories is one of the most powerful ways to heal, and I thank you, Julie, for sharing your story here.

*****

Hi, I’m Julie Seaward, and I’m going to tell you the story of my daughter, Jade - our 'Christmas Miracle' of 2016.


My boyfriend, Kenny and I were excited to start our family. We already had names picked out! In February of 2016, we got our positive pregnancy test! Everyone was so excited. My family, coworkers and friends were so supportive. They all came to the gatherings, and when we found out we where having a little princess, all of our friends showered us with gifts and love. On November 7th, 2016, at 7:07 pm, Jade Lillian Williams was born! The emotions that came over me were so powerful. I finally got to meet this little person who I'd felt kicking inside me for the past several months! It was instant love.


Before leaving the hospital, a nurse did a full check-up and said that Jade was fine.. but that wasn't the case. When Jade was just nine days old, I began to notice that she wasn't acting right. She was sleeping all day and not waking up to eat. I followed my motherly instincts and brought her back to the hospital where she was born, but they shunned us away, saying, "She's fine."

Two days later, she started having seizures. It was so scary. We rushed to the car to get to the hospital. Where we live, we are about an hour and a half away from the Janeway Children's Hospital. The closest hospital to us is a 45 minute drive away, so we choose the closer hospital for her sake. When we got there, just before I laid her on the bed, she coded in my arms. She went blue. This was the hardest thing I have ever had to go through. And then, the realization that if we had decided to go the the Janeway, we would have lost her half way there.


The emergency crew did everything they could to keep her alive. She was barely hanging on, and no one knew why she was so sick. They called the air ambulance to come get her, but we had to wait 12 hours because of the weather. During that time, we blessed our child, and just hoped that she would pull through.

Finally, the medevac team came and took Jade to the Janeway, and I was right behind them. They told me I wouldn’t be able to see her right away, as they needed to do some tests, and they warned me that when I did see her, it wouldn't be a happy sight. When we were finally able to see our daughter again, as we walked into the room, my heart broke. Every inch of her was covered with tubes, IVs, monitors, etc. I wasn’t even allowed to hold her.


During this time, we still had no answers. It took days for the test results to come back. Then one morning we were called for a meeting. The results where in.

Our whole family was there in a room with 8 doctors. They told us that Jade had Meningitis - an infection of the membranes covering the brain and spinal cord. Jade had contracted a rare form of the disease called Haemophilus Influenzae Bacterial Meningitis. The Neurologist said he hadn’t seen this kind of Meningitis for over twenty years, and that child had died before they could do much testing to learn anything from it. Jade was writing her own story. They were documenting everything and sending her samples all across Canada. The infection was building up quickly in Jade's brain. They hooked her up to different antibiotics, hoping they would slow the spread of the infection, and eventually stop the damage it was causing. It took a couple of days until they finally found the right antibiotic to help her.

On November 18th, we got called again. This time it sounded very serious. I was so scared, I didn’t want to meet with the doctors. I didn’t want to hear the words I thought they where going to say, but I had to go, and my family was there as my support.

This time, as we all walked in, I saw 12 doctors and nurses in the room and I froze. I knew it wasn’t good. As I sat down, they struggled to talk, knowing the news was going to be difficult to say. Finally, the Neurologist told me that when Jade was just 9 days old, when she coded in my arms, it was from the Meningitis, and this caused her to have a catastrophic stroke, taking out half of Jade's brain. He then said that they couldn’t get the infection under control fast enough, and the Meningitis had destroyed the other half of her brain. Jade only has 5-10% brain function left. Everyone in the room was speechless. At the time, I didn’t understand what that would mean for my daughter until he explained that she was likely not going to make it.


My world crashed down around me. I didn’t eat, didn't sleep or talk for days. I lashed out at people who loved me. I just didn’t understand why this was happening to me. Why Jade?! All I could do was hold my daughter as I cried.

Weeks went by and soon it was Christmas time. The doctor said, "Come with me please. We have bad news. Do you want to sign a DNR?"

Our hearts broke. I went in and held my little girl and told her it was ok to let go. She was very weak. Kenny and I didn’t want Jade to suffer, so we did sign the DNR. We wanted Jade to fly back home with the Christmas angels, if that was what she wanted.


The next morning, I called Now I Lay Me Down to Sleep, an organization that takes pictures of babies that will soon pass. Santa came. He loved Jade so much and gave her a special teddy bear for being so strong. Lots of pictures where taken. Our whole family came together as I held Jade. We took photos together, and then we took her breathing tube out. No mother should have to do that. I was trying to be strong through my tears. Jade struggled to breathe and I started to sing to her the song “You’ll be in my Heart", from Tarzan:

"For one so small, you seem so strong. My arms will hold you, keep you safe and warm. 
This bond between us can’t be broken. I will be here, don’t you cry."

After about 5 minutes, we thought she was gone, but Jade grabbed my finger with so much strength and love - she was telling me she wasn’t ready to go. Kenny and I held our fighting baby girl for 48 hours, and she was breathing on her own! The doctors couldn’t believe it. Right then and there, we took off the DNR order. If Jade wanted to fight to stay with us, I would do everything in my power to help her do so. It was a Christmas miracle! Jade was alive to see her first Christmas! The NICU announced her as 2016's miracle baby.

On January 12th,  2017, we were sent home with our precious baby girl. We know that Jade's life will be full of struggles, as it has been for the past year. She is diagnosed with cerebral palsy, she has a visual impairment and has many seizures a day. She can no longer eat by mouth. She currently has an NG tube, and will go for surgery at the end of January to have a G-tube inserted.

We don't know what other surgeries she might have to face in the future, but in saying all of that, my daughter is amazing. She is a wonderful, happy baby who can see, hear, smile and laugh! With such little brain function, we don’t understand how it’s possible, but she understands certain things and she recognizes my voice and responds to touch, sounds and colours.

The first time Jade laughed, our whole house was in tears. It was a deep belly laugh (she was laughing at her Poppy whistling)!


So here we are, one year later, and Jade just spent her first Christmas at home! Jade may always have challenges, but she is here, and she is happy, and she's not going down without a fight. This child touches everyone around her and she is teaching me so much about life and how people often take the small things for granted. To someone else, a smile may be no big deal, but I have learned to appreciate everything my child can do. The human brain is a magical thing.