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.

Saturday, December 23, 2017

Tibb's Eve Greetings


Just a quick note, on Tibb's Eve, to wish you all a very Merry Christmas, and a Happy New Year!

This past year has been a good one. We have a wonderful life, and we are enjoying every precious moment with our beautiful babies. Brennen just loves being a big brother to these two. We don't know what the future holds, but we know that our family will be their family, and our home will be their home for as long as they need us. We are pouring everything we have into these children. We're giving it all we've got - our time, our creative energy and our nurturing hearts. This Christmas, we have so much to be thankful for, and a million things to be happy about. This is us, and life is good!

It's been hard for us not to share photos of our little ones, but dressing up as Mummers was the perfect way to do it!

"Good night and good Christmas, Mummers, me dears,
Please God, we will see you next year.
"

Friday, December 22, 2017

'twas the Week Before Christmas

These past few weeks leading up to Christmas have been super busy. I know, I know, everyone is busy. It's nuts. It's a crazy time of year, and we are caught up in the hustle and bustle just like everybody else, but we are loving it! It has been an exercise in coordination and a true test of our planning abilities, but Andrew and I have successfully managed to get all three children to multiple Christmas events, wrote and mailed letters to Santa, and had visits with friends and family, all while building a house and keeping up with our daily medical appointments and therapies.. even if most days we were frantically running out the door, dragging coats and bags behind us, hoping we didn't forget anything! 

Christmas will be different for us this year, for several reasons. We are staying with my parents right now, until our new house is ready, and while it is wonderful to be surrounded by family, we are also surrounded by boxes. So many boxes. Man, we have a lot of stuff. We don't know where all of our things are, but we have the necessities. We didn't unpack our Christmas decorations, but we found our stockings and our Christmas jammies. Mom and Dad have a beautiful big tree that we helped to decorate, and while it wasn't the same as hanging our own bulbs and garland, there is something nice about sharing this one big tree with our family. The tree is a real balsam fir, and it's ten feet tall, so it smells like you're in a forest, but it feels like you're in Rockefeller Centre!

Here are some photos of our Christmas so far!


We attended the Janeway Rehab Children's Christmas Party, where we were happy to kick off the holidays with some of our favourite friends!


We got out for our annual Christmas brunch at Mallard Cottage.


We Celebrated the Season with Sean McCann..


and attended another special Christmas celebration at the Janeway!


We are looking forward to Christmas Eve (seriously, it's the day after tomorrow!) - tucking our children into their cozy beds at Nanny and Poppy's house, and anticipating the arrival of Santa (because surely he will know where to find us!)


Christmas is a special time of year for us - because we make it special. Right now, neither of our youngest children understand the concept of Santa, or reindeer, or presents under the tree, but they do understand the love that surrounds them and the beauty that exists in being part of a loving family. Our children know that they are loved, and that they belong, and together we are creating lasting memories of a wonderful holiday season.

Wishing you and yours a very Merry Christmas!

Monday, December 18, 2017

The Grand Unveil

On Friday, we attended The Grand Unveil of the new Rainbow Riders Therapeutic Riding Centre!


This new state-of-the-art facility has been a long time coming. I remember when Brennen first got involved with Rainbow Riders, when he was just three years old. The barn was rundown even then. The washroom was not accessible, the building was cold, and just really needed some structural upgrades.

The original barn, inherited by Rainbow Riders decades ago, was well past its useful life. They offered a wonderful program, but its demand had grown well beyond its capacity, and so, recognizing that it was not able to adequately meet the needs of its users, Rainbow Riders launched the Raise It Up campaign to raise funds to help improve its facilities.

The campaign raised 6.5 million dollars, and was successful in creating the incredible facility that now exists on Mt. Scio Road in Pippy Park. The 14 acre site houses a 16-stall barn, a large indoor arena, an Olympic-sized outdoor riding ring, riding trails, accessible washrooms, as well as an enclosed observation room and a multipurpose room.

The new facility will offer customized therapeutic horseback riding programs to children and youth with cognitive and physical disabilities. The entire barn is accessible to all, and will provide an incredible opportunity to young riders with special needs!

Julia Crocker, a participant and dear friend of ours, spoke so eloquently at the reception. She said, "I am proud to be a member of the Rainbow Riders community, and to speak to you today on behalf of all riders. For me, therapeutic riding gives me the freedom to soar through the air and leave my worries behind. I have been riding for more than seven years and I love spending time with the horses. Because of my balance, I am not able to participate in some sports, but my horse, Pearl helps me with my balance and core strength and keeps me active. I love riding! Thank you to everyone who has made this possible. This facility means greater accessibility, more opportunities, and inclusion for all. We are very proud of our new rainbow riders facility and I know I can speak for everyone when I say we can't wait to see what we can achieve! For children with disabilities, Rainbow Riders is a place to call our very own - a place where limitations are put aside and new possibilities begin. Thank you for believing in the power of therapeutic riding and for building this magical place. I can't wait to see where we can go. The possibilities are endless!"

Here is Julia cutting the ribbon, and then taking a selfie with Campaign Chair, Paul Antle! 


Watch this beautiful video to get a closer look at the magic that happens at Rainbow Riders!


We also attended the 'Holiday Traditions Celebration' at the barn on Sunday. Rainbow Riders was excited to host their first Christmas event in the new facility, and it was absolutely spectacular. We are not religious at all, but the Christmas story gets me every time. The birth of Jesus Christ as told in the New Testament was represented by young riders and children from the community. Brennen has played a Shepherd in the live nativity for several years now, but this year he was a Wise Man! As they all took their places, a band softly played a beautiful rendition of "Away in a Manger". It was quite moving, and really made you feel the true spirit of the holidays, and what Christmas should be about. It's the very essence of childhood - the sense of wonder and the innocent belief in possibility that is so strong this time of year. This event was a special one for us, and we were happy to share it together as a family.


Congratulations to Rainbow Riders on the completion of their incredible new facility! 
We are excited for the future of the organization, and for all of the potential that it holds!  

Friday, December 8, 2017

Today's Kids In Motion

I am so honoured to be featured in Today's Kids In Motion magazine! If you're not familiar, Today's Kids In Motion is a Canadian pediatric health publication for families of children with special needs. I was thrilled when they reached out to me, asking if I would share an article for the Fall 2017 issue of the magazine.

My article is HERE! and I have copied it below. It might be a good read for anyone who is new to my blog!


Brennen's Unexpected Journey

Brennen was born full-term, two days before his due date, in Sacramento, California. It was a normal pregnancy and delivery, although I replay it constantly in my mind, trying to recall if there was something I’d missed. I was sent home from the hospital with a “healthy baby”, and we were over the moon with joy and love for our precious baby boy! Until he started crying… and crying… and crying. You might think I’m exaggerating, but it is the truth - he didn’t do anything but cry for 5 whole months. I knew there was something wrong, but had no idea what. We went back to our doctor every other day. She told me he was a “colicky baby” and he would outgrow it. That didn’t happen. Feeling like I was not being taken seriously, and getting no sort of resolution, Brennen and I left California and came home to Newfoundland where we had the loving support of my family.

Almost immediately after arriving back home, we got in to see a pediatrician at the Janeway Child Health Centre. Though I knew there was something wrong with my child, I was not prepared for what I heard on that first encounter. Words like “serious”, “urgent” and “critical”. All of a sudden we were in an emergency situation and needed a battery of tests to be done right away! We were sent to neurology, cardiology, genetics, ophthalmology and audiology, among others. Brennen had a CT Scan, MRI, EEG, EKG and ultrasound all the matter of days. It was a whirlwind of tests and probes. I couldn’t believe what was happening. I knew that Brennen was behind on his milestones (ie. hadn’t met ANY), and I knew something was not right, but I wasn’t prepared for what they were about to tell me. My perfect little baby boy had something seriously wrong with him and there was nothing I could do about it. It was such a helpless feeling. I knew they were testing for conditions that I couldn’t even bring myself to contemplate. We were referred to physiotherapy, occupational therapy and speech therapy, all to begin immediately.

When Brennen was eight months old, after blood test after blood test had come back negative, we were given the diagnosis of Spastic Tetraparetic Cerebral Palsy. Spastic meaning stiff muscle tone, and tetraparetic meaning that it affects all parts of his body. As difficult as that was to hear, it was almost a relief. They say the scariest thing in life is the unknown, and now at least we knew what we were dealing with. It wasn’t going to go away. It wasn’t going to get better, but it wasn’t going to get worse.

As well as I think I handled the diagnosis, I was surprisingly knocked off my feet by the suggestion that I join a “CP Support Group”. Was it THAT bad that I needed a support group?! Support groups, I thought, were for people dealing with some sort of horrific tragedy or loss. I wasn’t one of those people, was I? What I was about to learn was that I was going through both of those things, and all of the emotions that go along with them. The tragedy of what had happened to my perfect unborn baby, and the loss of the child that I thought I was going to have. It was a mourning process, for sure.

When I think back on those early days, when I thought I was alone in the world, and that I would never have any sort of “normal” life again, I wish I could go back and tell myself that it really was going to be ok. When I look at our life now, I could never imagine things any other way. Brennen is a happy boy who loves life and spreads that love with everyone who knows him. He brings us so much joy every day and has taught me more about life than I ever could have imagined.

The past twelve years have been filled with doctors’ appointments, surgeries, therapy sessions and ISSP meetings. We have spent a small fortune on medical equipment, adaptations and therapy devices. We have learned who our friends are and who they are not. There have been dark days, but they make the good days that much better.

Most recently, Brennen underwent a spinal fusion surgery where he had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. He has been doing surprisingly well since his surgery, which is great, but I cannot deny the true and very real pain of knowing that my child has to experience a life that has so many struggles. Brennen is amazing and he fights it with everything he's got. His resilience, determination, and courage are far greater than my own. The journey we are on is a unique one, and I have come to terms with the fact that there will always be challenges and road blocks along the way. In the meantime, I will invest all of my time and love and energy into my son and supporting every single one of his complex needs.

Brennen is now headed into Grade 6, and I am thankful that he has wonderful teachers who love and support him. 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.

This whole unexpected journey has taught me so much about myself, my relationships, and about love in general. I never could have fathomed that in such a short time, Brennen would change my world in the best way possible. He continues to teach us what strength truly is and we are so inspired by our brave little boy. Life is good, because he is in it.


A huge thank you to Today's Kids In Motion for featuring us in their magazine! I am thrilled to be part of such a wonderful publication that deals with issues facing parents of children with disabilities in a positive way, and celebrates the joys of one of life's greatest gifts.

-Julie xo

Sunday, December 3, 2017

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 so excited to say that "Crippled" will be premiering at the historic LSPU Hall (Resource Centre for the Arts) here in St. John's in February, 2018!

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.


 Tickets are available now! Click HERE to purchase!

For more information, visit www.crippled.ca