Thursday, August 28, 2014

Soaring Birds

I recently connected with Sasha Stine, of Soaring Birds Studio.

Sasha creates beautiful, unique jewelry to help spread awareness about various diseases, disorders, and conditions that affect many children and their family members. Each piece is handmade using Swarovski crystal beads and Czech glass beads hand-wrapped with jewelry wire within circular or teardrop pendants.

Sasha shared with me the story of her son, Liam - the inspiration behind her business.

Soaring Birds Studio's Purpose

I started creating jewelry to honor my son, Liam The Brave, and all of the extraordinary families and children we've met because of his undiagnosed, medically complex and fragile condition. 

Liam was born in December of 2010, seemingly perfectly healthy after an uneventful pregnancy and natural birth. At 3 months of age, he was smiling, rolling over, holding his head up, and nursing like a champ. Then one day he had a cluster of seizures. He was diagnosed with a catastrophic form of childhood epilepsy called Infantile Spasms. He was hospitalized for 3 weeks, and he was so sedated from all of the medication that he slept for most of that time. When he finally awoke, he was unable to hold his head up, and unable to drink from a bottle. His MRI showed massive deterioration of his brain in both hemispheres and cerebellum. His brain was dying, shrinking. There was damage everywhere. We could see it on the film. It was white where it should have been gray. His neurologist was expecting the MRI to be clear, to be normal, but it wasn't. He suspected mitochondrial disease, however, biopsies and blood tests did not confirm that. The infantile spasms were eventually resolved with ACTH, a powerful steroid treatment, and Liam had multiple surgeries to insert an NG tube, and do a fundoplication. 

In October of 2011, Liam was having shallow, irregular breaths and he stopped breathing. His nurse was at our home and resuscitated him with vigorous stimulation. An ambulance was called to transport us to the hospital, and that was the longest ride of my life. His heart was still beating and he was still breathing, just very shallow and irregularly, and he was extremely weak. My then 4 year old daughter asked "Did Liam die a little bit?" She sat with her grandmother while paramedics worked on Liam. I told her no, that we would help him. 

In the ER, Liam had blood drawn. His white blood-cell count was high, but there were no other signs of illness. He was placed on a bipap machine, but after nine hours, intubation was needed to help him breathe. Another MRI was ordered (his 4th), and it again showed progression of the cerebral atrophy. It was now in his midbrain and brainstem, and the ventricles in his brain were expanding to make up for the loss of brain volume. The PICU doctors did not tell us life expectancy, but they were grim with his prognosis. We were devastated. 

Liam recovered in the hospital, and after 10 days was discharged to go home.

In March of 2012, Liam began having tonic seizures that were very hard on his little body. He would only have them during his naps. He would be asleep, then suddenly open both eyes very wide, and his limbs and torso would stiffen for about ten seconds. Sometimes, he'd go right back to sleep, but sometimes he would cry and scream. It was horrible. 

His 5th MRI showed more progression of the cerebral atrophy, which we expected, but nothing acute going on to account for Liam's severe irritability. His neurologist referred to the results as "end stage atrophy." His brain was essentially continuing to die. We made very difficult decisions regarding Liam's care and very poor prognosis. We knew his life would end entirely too soon, and we were devastated. We still had no answers to the underlying cause of this rapid progression of brain deterioration and seizures. He "screams" mitochondiral disease, leukodystrophies, even Batten Disease symptoms, yet tests just don't confirm these diseases. We added medications to ease his pain and suffering, which helped tremendously.

December 13, 2012
Liam turned two years old!! It was an unusually warm day and we had the door open. He loves feeling the breeze and hearing birds chirping. They always bring a wave of peace and calm over him. He was wide awake, happy, and didn't need any medication to enjoy his miraculous day. He even gave us some coos a few days later to say just how much he loved us, and we returned the love each second with huge smiles and laughs! It was the most beautiful week ever!! After all of this fun, Liam slept all day Monday, the 17th. On Tuesday, the 18th, he slept most of the morning, and awoke screaming and crying, and this continued for over an hour after being awake. He needed a lot of medication to alleviate whatever pain he was having. He eventually calmed but was having shallow breathing, so we increased his oxygen to 5 liters. 

The next day, Liam was gasping for air. His medical team was here and we increased his meds and oxygen to 8 liters on a mask. I knew the end was coming but didn't say anything, yet some knew. I said we should celebrate Christmas early and open some gifts. We opened gifts for Liam - a stuffed animal from his sissy, clothes, and light up toys. I held Liam as he remained calm, but only breathed a dozen breaths per minute. I whispered to him "It's okay Bubby, it's ok. I've got you baby boy. Mommy's got ya." I asked God to please keep him here with us until after Christmas, but if he needed to take him, please let him be peaceful.

December 20, 2012
Liam was calm today, but still having episodes of gasping for air. He was taking six breaths per minute that afternoon. Friends and family came to visit. I knew he was fading but didn't tell anyone. I went to lay down with my daughter for the night, and my husband sent me a text to come into the living room where he was holding Liam as he slept. He said "He's not moving." He was so calm. I ran to his bedroom to grab the stethoscope to listen. I heard nothing, only my own raving heartbeat. I was on the phone with his hospice nurse, who was on the way. I told her I couldn't hear anything, just my own heartbeat. At 11:15 pm, Liam took his last breath in his daddy's arms. I said "Let me hold him" in a panicked voice, like if I took him quickly, he might breathe again. But he didn't. He looked so peaceful. My husband stood with me, wrapped his arms around us both, and we cried. The biggest calm washed over me. My heart rate dropped. I inhaled. I exhaled. I let God in to comfort me. I hope my husband felt the same thing. The wind blew so hard outside that branches scratched the windows. Chairs in the yard fell over. I knew that was Liam soaring high above to Heaven. As we kissed our beautiful angel goodbye, we told him we'd see him again.. and what a glorious day that would be!!

Liam touched thousands of people worldwide. We miss his gorgeous face terribly. He was filled with so much love, he gave us a fairytale! We didn't focus on what he couldn't do, only what his little fingers and beautiful face and warm snuggles gave us. That was pure joy! His only diagnosis as of today, is cerebral atrophy and refractory epilepsy. We have yet to know why his brain continued to deteriorate. It is devastating and utterly heartbreaking. He was the most beautiful baby in the world and will always be my warrior, my fighter, my treasure. He and his big sister, McKenna, shared an unbreakable bond and immense love. They spoke their own language, even though Liam never uttered a word. We've welcomed another baby boy to our family, Finn Liam. It breaks my heart that I will never see my three children hand-in-hand strolling down the street, or never see them laugh together. But they will always know their brother, and how brave he was! We adore you, Liam The Brave!!

I will continue to create bracelets and necklaces, and whatever else I can muster to spread awareness about cerebral atrophy, epilepsy, and many other diseases, disorders, and conditions that our exceptional children live with every day. We have over 75 medical conditions and various causes represented in our shop as bracelets and a variety of necklace styles. We hope you enjoy our creations, share them with someone you love, and share your stories with others!


Sasha, I commend you on your strength. What you have been through is every parent's greatest fear, yet I feel like it could happen to any one of us. It is heartbreaking, yes, but it is important to share your story. I want people to know about children with special needs, and how families are affected and changed by them. 

I am deeply touched, and grateful for your love, wisdom and openness.

May we ALL love deeply and learn from each other. 

Saturday, August 23, 2014


Firefly is an innovative company that makes postural support seats and mobility devices that let children with motor impairment "participate in all those moments that make family life special".

Firefly also has a Special Needs Blog, to which I am a regular contributor. Each month, they send out a list of "talking points" to their regular bloggers and parents - ten topics they want to get our opinion on. They then turn the answers into articles and blog posts for the benefit of other parents.

Their questions are thought-provoking and inspiring, and they evoke some insightful answers. Questions like "What is the most common lie you tell your children?" and "Tell me something about everyday life that only the parent of a child with special needs would know."

Here are some of my most recent contributions.

I am looking forward to the next set of Talking Points. Stay tuned to Firefly's Special Needs Blog, where parents, caregivers and healthcare professionals share their stories, insights and thoughts to inspire each other.

Monday, August 18, 2014

Stella & Dot

This past weekend, I hosted a Stella & Dot Trunk Show for our CP Moms Group!

I love the Stella & Dot brand. They have an innovative social shopping concept. If women got together to design their dream job, this is what it would look like! The mission of Stella & Dot is to give every woman the means to style her own life. They have a vision of the world where strong women live bold and joyful lives. Doesn't that sound wonderful?!

It was the perfect opportunity for our group of Moms to get together. In our busy lives, it is important to take time out for ourselves. We spend the majority of our time caring for our children with special needs, and it can be challenging. An evening spent with other Moms who know what we're going through can be just what we need to recharge and refuel. And what's more fun than playing with jewelry and browsing the latest trends?

Our stylist for the evening was Pamela Meester, independent stylist for Stella & Dot. Pam also happens to be an Aunt to a sweet little boy with cerebral palsy.

Pam shared with me how working with Stella & Dot has enriched her own life -

"Being involved in such an exciting opportunity has brought out passion and motivation in me that I had never anticipated.  It has allowed me to bring together my love of fashion and friendship, but it has also given me flexibility to work while staying at home with my 16 month old.  Stella & Dot is more than just fashion, it is an amazing community of women who support and motivate each other to live happy and joyful lives and I am lucky to be able to share this opportunity with others.  On top of that, it warms my heart to be able to give back to the community through the Stella & Dot Foundation, which to date has raised over $1.6 million towards causes such as Breast Cancer and Autism Awareness." 

We had a wonderful evening! Thirteen women - all mothers to children with disabilities and complex medical needs - bonding and building friendships; offering support and being supported. Connecting with other Moms and building a supportive community is a necessity when we are in the trenches of the challenging yet ever so rewarding job of raising our families.

For those of you who weren't able to make it, or for anyone interested in making a purchase, you can shop the show online until September 6th. Click the image below to shop the latest scarves, bags and accessories. You won't be disappointed!

Sunday, August 10, 2014

Teachable Moments

As an Early Childhood Educator, I am big on 'teachable moments'. A teachable moment is an unplanned event during the day that adults can use as a learning opportunity. When a child displays an action or behavior that can be used as a learning tool, parents and caregivers should capitalize on the moment, and provide the opportunity to expand the child's learning.

It's all about timing. The 'unplanned' part is essential. It's about speaking in the moment, answering questions and addressing the interest of the child.

Why am I talking about this??

So often, I encounter what should be teachable moments, directly related to my child and his disability. I can't count the number of times we have heard a child ask a question, only to hear their parent divert the attention, give a false answer, or totally ignore the question.

Here’s an example: Most evenings, we go out for a ‘family walk’ around our neighborhood. Our family includes myself (Mom), Andrew (Dad), Brennen, and our big Greyhound – a retired race dog named Rumble. On several occasions, we have encountered the same family also out for a walk. As they approached us one evening, a young girl (probably 7 or 8 years old) exclaimed “A baby!

Now.. I know she was talking about Brennen. They know she was talking about Brennen. Yet, the mother replies, "Oh, no that's a big dog!"

Lady.. your daughter is not stupid. She knows the difference between a dog and a baby! She was talking about my son. All you had to do was explain to her that he is a little boy in a wheelchair. She obviously has had no exposure to people in wheelchairs, and that’s ok. She’s young. But chances are, she will encounter individuals with various disabilities throughout her lifetime. It is your job to prepare her for this! A few brief words about how some people have trouble walking and need to use wheelchairs would suffice. Maybe explain to her that it does look a little bit like a stroller, but it is actually a wheelchair, for older children. It’s not rocket science.

I get that perhaps she felt embarrassed (it was obvious that we'd heard her child say "A baby!"), and maybe she didn't want us to feel bad, or perhaps she just didn't know what to say. But you guys, please don't lie to your children. Parents are (or should be) their child's greatest influence. They listen to what you say and they hold it to a high regard. They believe what you say is the truth. This lady implying to her daughter that Brennen was a dog is just confusing! Your kids are smarter than that. They deserve better than that.

Children will say funny things, and they will ask strange and often embarrassing questions, but that's all a part of childhood, and all a part of learning. It is our job to answer their questions truthfully, with as much or as little information necessary to satisfy their curiosity.

Some children have great questions! A little boy recently asked me “If Brennen is in a wheelchair, how does he get in bed?” Excellent question. I told him that “We help Brennen out of his chair, help him get his pajamas on and then tuck him into bed, just like your Mommy and Daddy tuck you in at bedtime!” He was happy with that answer, and went on to what he was previously doing.

Another little boy came over to Brennen in the swimming pool one day and asked how old he was, to which Andrew replied that he was nine. The boy thought for a minute and said “He’s small. Is he strong?” Great question. Andrew said “He’s probably not as strong as you are!

A young girl came sauntering over shortly after and asked “What’s wrong with him? Is he tired?” Andrew calmly replied that he wasn’t tired, he was just relaxing in the water, to which the girl retorted, “Why is his mouth open?

The little boy from earlier piped in and said quite matter-of-factly, “So he can breathe!

I love that kid.

My point is that children are naturally going to be curious about anything that is 'different' or new to them. It is our job as parents to educate our children and to prepare them for life and the great big world out there. We must equip them with the tools and the language to be able to ask their questions without being offensive or rude.

When your child notices or asks questions about a person who has a disability, it is an opportunity for you to talk about individual differences. Your response will shape your child’s future attitudes and actions toward people who live with disabilities. Explain that there are actually lots of ways that people are different, but there are also many ways that they are the same.

Teaching your child to be respectful and inclusive of all people is one of the greatest gifts you can give them. Treating others as you would like to be treated is always good advice.

-Julie B

This article was featured as a guest post on Fun and Function - an amazing company started by an Occupational Therapist and Mom of a child with special needs. "We started Fun and Function because we couldn’t find kid-friendly sensory tools that would fit our family’s needs. So we channeled our frustration and turned it into a passion for creating the best sensory toys and tools on the planet."
Check out their catalog and website devoted to making sure children with special needs get the tools they need to succeed.

Wednesday, August 6, 2014

Mommy & Me

So, last Mother's Day, Andrew (and Brennen) surprised me with a gift certificate for a "Mommy & Me" photo session with one of our favourite photographers, Andrew Smith.

We waited a while for the weather to cooperate, but we finally got out a couple of weeks ago and took some photos! Andrew was adamant that it was to be just for Brennen and I, but of course I made him get in some photos too.

Having beautiful pictures of my family is very important to me. I think somehow, subconsciously, I think back to a time several years ago, when we first received our diagnosis: that Brennen has cerebral palsy. I remember so many feelings of grief and pain and absolute sadness. I had no idea what it meant to raise a child with special needs. I had very little hope for our future, and thought that I would never be happy again. I wish that someone could have shown me a photograph, a snapshot of what our life would be like a few years down the road - some snippet of proof that we would survive this thing.

The truth is, having a child like Brennen is not sad or unfortunate. He is a happy boy and we are a happy family. I am reminded of that every single day, but I do like to have some special moments captured in photographs!  Here are a few from our shoot with Andrew Smith.

Friday, August 1, 2014

UCPRI - Adaptive Arts

Being so highly involved with the Cerebral Palsy Association here in Newfoundland, I enjoy making connections with other CP Associations, whether they be in another province or another country. We are all fighting for the same things. We are all striving for the same reality: a life without limits for people with disabilities. I recently connected with United Cerebral Palsy of Rhode Island, and learned about a wonderful program they offer that is making a difference and enhancing the lives of many individuals in their community.

United Cerebral Palsy of Rhode Island (UCPRI)

United Cerebral Palsy of Rhode Island is dedicated to advancing the independence, productivity and full citizenship of individuals with cerebral palsy and other disabilities. They offer a wide range of high quality supports for children and adults, from home-based therapeutic services, to community-based activities and supported living.

I was excited to learn about their Adaptive Arts Program, a wonderful initiative that gets individuals with disabilities involved in creating art!

About the Adaptive Arts Program

In 1995, the Adaptive Arts Program started out as an opportunity for a small group of individuals with disabilities to express themselves through poetry. Today, the program continues to offer art classes in drawing, painting and art jewelry / accessories to adults with disabilities living in the community, as well as the hospital setting. Through the use of adaptive tools, artists realize their full potential in artistic expression.

Art as Therapy   

Adaptive Arts provide a special freedom of expression and creativity for people with disabilities. In some cases, this form of independence is the only means by which a person can express themselves. Through Adaptive Arts, individuals with physical and intellectual challenges are able to utilize assistive equipment and therapies to overcome their challenges to freely create some truly beautiful creations. 

Supporting Adaptive Arts

The best way to support the Artists in this program is to promote the sale of their work. This provides a source of income for people that face unique challenges entering the traditional workplace but more importantly, provides a sense of accomplishment and acceptance when someone purchases a piece of their art.

A former teacher of the program described her experience:
"All of the people I worked with at UCPRI were so incredibly inspiring. It really changed me and made me a better person. I had so much fun doing the classes and coming up with projects. Everyone had so much joy and enthusiasm. I could also see how art really helped with self esteem. Some of the artists in the program had been through difficult circumstances. It was really great to see them get excited about a piece they were working on or accomplish something they didn't think they could."

All of the artwork that is produced is for sale, with 100% of the sale price from original works going directly to the artist that created it.

This beautiful glass bead and leather cord necklace was handmade by one of the talented artists in the Adaptive Arts Program. It came with a tag signed by the artist. I will wear it happily, knowing that there is a meaningful story and cause behind it. It is a conversation piece. "Where did you get that necklace?" "I'm glad you asked!", I'll say!  And I will spread the word of how we can encourage economic empowerment and create meaningful opportunities for individuals with disabilities.

To see a full line of their Artists' works, please visit