A brother unites a family and inspires research

By Louise Kinross

Five siblings have created research scholarships in occupational science and therapy at the University of Toronto in honour of their brother Peter Rappolt. Peter (bottom centre), the youngest in the family at 57, has a developmental disability and severe, chronic mental illness. His brothers and sisters have worked together for decades to advocate for him in the health system.

The Peter Rappolt Family Scholarships for Research in Occupational Performance and Wellbeing are aimed at improving the lives of people with complex, intractable conditions. Peter’s sister Marg sits on Holland Bloorview’s board and chairs its business and audit committee. BLOOM spoke with Peter’s sister Susan, who is chair of U of T’s Department of Occupational Science and Occupational Therapy, about her experiences as a sibling.

BLOOM: It’s quite unusual that there would be five siblings who are all able to support their brother. Where does Peter currently live, and how do the five of you stay in contact with Peter and each other?

Susan Rappolt: Peter is the youngest of the six of us and lives in Cambridge in a long-term care facility with a very high level of care. We all live in southern Ontario and are in reasonably close proximity. My sisters Marg and Gail are power of attorney for care and finances, and they’re frontline contacts with the nursing and support staff. We’ve hired workers to come in and take Peter out when he’s well enough to go for a drive and do activities.

My siblings are retired or semi-retired, and I’m the only one working full-time, so I visit on the weekends. We all text and e-mail after a visit with Pete, to keep everyone up to date on any swings in his abilities or mood.

This morning Marg visited and because Pete really likes picnics, Marg took him for an indoor picnic, because it was snowing. He’s had a slump these past few weeks and been pretty frail and psychotic, and in pain, so it was nice to hear that he’s feeling better. Marg sent out a photo of him eating lemon meringue pie and smiling.

BLOOM: How does Peter's mental illness affect him on a daily basis?

Susan Rappolt: Pete’s had probably every diagnosis you can imagine. He is paranoid and hallucinates and is fearful and very vulnerable to psychotic visual and auditory images when he’s not well. The intensity and frequency of his psychosis has increased over the past 10 years. More often than not, he’s engaging with people who are villainous and threatening him. They’ve tried every medication, and nothing has been successful. It’s really hard to see him suffering. Sometimes we go in and he’ll see us, and he can’t pull himself out of it, but if I give him a hug he’ll start crying on my shoulder.

BLOOM: When did his mental illness start?

Susan Rappolt: As a teenager and young adult. His primary diagnosis was developmental delay. So he has a dual diagnosis.

Pete has many cognitive strengths. He gets and makes jokes, and he has an amazing sensitivity and insight into human dynamics. He’s way more perceptive than other people in the room about how you’re feeling, and about how what someone says may affect others. He loves sports. In better days, he knew the names of hockey players and teams and followed hockey and baseball. When our kids were little he liked to do stuff with them and we’d have family gatherings. We’d go to the local diamond and the kids and Uncle Pete would play baseball.

BLOOM: Was your decision to become an occupational therapist influenced by Peter?

Susan Rappolt: Yes, it really was. When I was 11 or 12 and Peter was six, I recognized his potential to do stuff that wasn’t being realized because he was very much protected. And he was smart enough to milk it. It did influence my thinking, and when I learned about the discipline of occupational therapy, it seemed like an obvious fit.

BLOOM: I read a piece on the U of T website where you talked about having to advocate for Peter in hospital when he wasn’t getting appropriate care.

Susan Rappolt: Yes, that particular incident was horrible and it was outstanding, because we hadn’t faced that kind of discrimination in the health system otherwise. Pete wasn’t doing well and had an incident that looked like a small stroke. We got a message that he was on the acute-care side of the hospital and was being monitored, and would need to be kept quiet for a couple of days.

My sister and I went in and there was a nurse sitting there recording something, which I thought was odd. I asked ‘Is Pete eating? Is he drinking? How are things working here?’ And she said ‘no’ and put her eyes down. ‘So where’s the IV?’ I said. She said ‘No, there’s no IV.’ I knew what was happening then. ‘Okay, you start the IV right now,’ I said. No one had given a do not resuscitate order.

I know that our situation is unique in that we siblings probably have close to 10 post-secondary degrees, and lots of skill sets, and we all speak English. It’s so different for a single mom living in poverty. We’ve very lucky that we have all of these skills and I work in health care. You have to know the system to ask the right questions to get the right care.

BLOOM: How do you cope with seeing Peter distraught, and not being able to find something to treat his mental illness?

Susan Rappolt: It’s really hard to see him suffer. We’ve been very lucky with our experience of the nursing care he receives and the community care workers. They’re lovely people who are so talented and skilled in trying to support him and soothe him. It is heartbreaking. But it’s not a sudden tragedy. We’ve watched his decline over the last years, and are coming to terms with the doctor’s projection that he would see a physical decline and probably an early death.

Although it’s not a good situation, we have turned over many stones and pushed as hard—and in as many places—as we can, so we know there aren’t other answers. We’re really dealing with palliation now.

BLOOM: Why did you decide to fund the scholarships in Peter’s name?

Susan Rappolt: As a family, we know we can’t make big changes to Pete’s quality of life because of his intractable mental health condition. So we’re focused on providing him with whatever pleasure and support we can.

The focus of the awards is research to promote quality of life in individuals who have chronic, declining and, often, very complex needs. How can we bring joy or alleviate pain in a life that is otherwise pretty miserable?

There’s nothing more medicine can do, but perhaps we can do compensatory things with assistive technology, or social interventions, or by modifying an activity so a person can participate. Often it takes an occupational lens to parse that out. How can we intervene with the person, the occupation or the environment to help someone reach their goals and be happier?

BLOOM: I understand the first gift will fund a scholarship for a PhD student at the Rehabilitation Sciences Institute?

Susan Rappolt: Yes. The PhD part is endowed, and our first student should receive that in September. Our scientists in the RSI will supervise that student in the doctoral stream. The second gift creates a research fund for projects by students doing a master of science in occupational therapy.  

BLOOM: What advice would you offer other siblings who perhaps live at home with their parents, but are concerned about how they may support their brother or sister in the future?

Susan Rappolt: It’s a very challenging scenario, and I don’t know of any families that experience it differently. Especially if the person is still residing at home, the family caregivers need support, in the same way that we’ve developed caregiver protocols in palliative care and stroke. I don’t think the same kind of attention has been paid to family caregivers of individuals with a dual diagnosis, like Peter. I’d like to raise awareness of this issue.

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Doctors' disbelief is a common response to rare disease

By Louise Kinross

Laura Howson-Strong is an occupational therapist at Holland Bloorview who has worked with children with disabilities at two ends of the spectrum: as preschoolers readying for kindergarten at our nursery schools, and as teens preparing for transition to adulthood.

At a Schwartz Rounds last year, Laura shared what it was like to work with our families given her personal experience with rare disease. As a child, Laura had pain that oscillated between her stomach, her chest and her joints. Doctors told her parents she was attention-seeking and “making it up,” she says.

As a young adult her symptoms got worse. She was diagnosed with conversion disorder, “where the physical symptoms are real, but are caused by a reaction to stress or psychological trauma.” It took 11 years, several misdiagnoses and a lot of her own research, before she learned she had a rare connective tissue disease called Ehlers Danlos syndrome. Three years later she was diagnosed with a second condition, mast cell activation syndrome, an immune disease.

“When I heard about the Schwartz Rounds on health-care workers who are also health-care users, it spoke to me,” she says. “I thought: ‘Why don’t I tell people about my diseases and experiences? Why am I hiding, so to speak?’” 

“I realized I was keeping quiet because I had a lot of shame and doubt. In the past, I wasn’t supposed to speak about my symptoms, because they were something I was ‘doing’ to myself. But then I learned this was still happening to others. In 2018, children are still given mental illness diagnoses or going undiagnosed when their bodies are failing them. My story isn't uncommon.”

BLOOM interviewed Laura to learn more about how her personal experiences have informed her work.

BLOOM: What is your current job here?

Laura Howson-Strong: I’m an occupational therapist in experience-based employment programs like Youth@Work, Ready to Work and VolunteerAble. A large focus of my job is helping clients and families identify and build the skilled needed for transition to adulthood. It could be learning about job tasks that you can do and like; speaking to new people; ways to market yourself; and thinking about how you learn and how to ask for accommodations.

I’ve also worked in early learning with children with disabilities from birth to six.

Over time, I’ve heard so many similarities in the goal areas of these two populations. Things like: ‘How do I make friends?’; ‘How do I speak up to ask for help?’; ‘What can I do and what do I enjoy doing?’

BLOOM: What’s the greatest joy of your work with teens?

Laura Howson-Strong: I love being able to be part of successes and solutions. In some cases I’m able to see youth and their families throughout their young adulthood, so I’m able to see the change and the progress over time.

BLOOM: Why is Rare Disease Day on Feb. 28 important?

Laura Howson-Strong: First and foremost, there aren't enough of us to represent ourselves, and many rare diseases go undiagnosed. So we need allies. We need people and communities and organizations to spread the word to bring awareness to these diseases, and to have decision-makers better understand their impact. We need help to advocate for increased funding, knowledge, research, treatment, and possibly cures. I’ve learned that the majority of the rare diseases out there don’t have cures.

For me, I worry that in light of the incredible medical advances going on, a cure for my disease may exist in a cure for another disease. But it might never come to fruition for me, because the right people aren't aware that my disease exists.

Rare Disease day is also an opportunity to celebrate our journeys and uniqueness and beauty and strength. We’re not made to fit moulds, and that should be recognized and honoured.

It's also important because we need to end the unnecessarily complex and sometimes damaging diagnostic processes people experience. Mental illness diagnoses should not be a common step of your medical pathway to getting a rare disease diagnosis.

Right now, denial of symptoms, of services, and of the support we so desperately need within the healthcare system, is a common thread in many of our stories.

BLOOM: What is your diagnosis and how does it affect you on a daily basis?

Laura Howson-Strong: My primary diagnosis is Ehlers Danlos syndrome (EDS). EDS is varied, individual and multi-systemic. It’s a genetic connective tissue disorder with symptoms that range from mild to debilitating. Many of our symptoms have diagnoses of their own.

It affects me daily, all day, every day. The main issues I deal with are chronic pain, joint dislocations, fatigue, gastrointestinal problems and nerve damage.

BLOOM: How do you manage?

Laura Howson-Strong: Daily medications. A lot of them. I also use braces. Some constantly and others at different times of the day. I have ankle-foot orthoses, a neck brace, hip braces, finger and wrist braces. I use a cane for difficult days, long distances and bad weather. 

It's different for each person with EDS, but I manage pain and fatigue through medications, joint injections and positioning—the way I move my body, the way I sit and the way I reposition myself. I set up my days to have a variety of movement and rest activities. I’ve tried a lot of rehab and therapies, and I’ve stuck with swimming therapy and physiotherapy. I’m going to a private specialty EDS clinic in Ohio this year to pay for medical services.

BLOOM: Is there not one in Toronto?

Laura Howson-Strong: Luckily, a new rare disease clinic opened through the University Health Network last year, and I'm on a long wait list for it. At this time, it's a diagnostic clinic only. I look forward to eventually connecting with doctors familiar with EDS through this clinic.

I'll be paying thousands of dollars to go for treatment in Ohio to address loose joints in my neck that dislocate easily. It will likely include Botox, bracing and therapy done by a doctor.

BLOOM: What is your hope for the trip?

Laura Howson-Strong: Pain reduction, better treatment of the symptoms, more EDS-specific knowledge and validation of my symptoms.

BLOOM: You also have an immune disorder. How does that affect you?

Laura Howson-Strong: I have an overactive response to allergens, but it's difficult to determine what allergens because the response is not consistent. It could be clothes, food, the environment or my own heat and sweat. I get symptoms of anaphylaxis such as rashes, swelling, throat closure and difficulty breathing. I take medication to decrease the response, rest, and sometimes go to the hospital. Mast cell activation syndrome can be connected to EDS, but the connection isn't fully understood.

BLOOM: How does having a rare disease add value to your work?

Laura Howson-Strong: I was an occupational therapist first, and a patient second. When I was at school, I had no diagnosis.

When I entered the health-care system as an occupational therapist, I was shocked at how much I struggled to navigate and to speak up. I was educated in health care, yet I became lost and overwhelmed.

When I was diagnosed with conversion disorder, I was shut down by doctors. They would say ‘the basis of this is psychological or psychiatric, and I don’t have the services.’ They refused to refer me on to specialty clinics for the physical symptoms I had.

I lived a few years of my life thinking I was causing this myself. I began to hide the symptoms, the pain, and I just didn’t talk about it. This interview is going to be the first time that many of my friends and family hear that I was diagnosed with a rare disorder, let alone conversion disorder.

One way my experience influences my work is that I really think about how we value the voices of youth. How do we include them in decision-making, and in appropriately understanding their treatment plan and being part of their plan?

I think we're trying hard to do that as an organization, but I still think we have a ways to go to make sure children have their voices and concerns heard during appointments, and have opportunities to get their questions answered in the health system overall.

BLOOM: How do your own experiences with pain and disability inform your work?

Laura Howson-Strong: As a patient, I was so surprised to learn how much the medical system expects of patients and caregivers: to be a system navigator, a doctor liaison, an organizer, a nutritionist, a therapist, a record-keeper. I learned it’s exhausting and sometimes almost impossible.

Today I can better see how much pressure we put on parents to do everything—to keep connected, to be a parent, to be a therapist, to be a doctor, to manage all the appointments, to manage all of the paperwork.

When is there time for parents to self-reflect, network, participate in self-care, or just have fun?

It makes me look at what I expect from families in sessions, and to cut down on the number of recommendations and goals I have. When I set goals with families now, they have to work into their everyday lives and be important in the here and now.

BLOOM: What’s the difference between what’s ideal and what’s doable?

Laura Howson-Strong: We have a tendency within the medical model to want to fix problems, so we give lots of recommendations. We give them with good intentions, but we don’t understand how much it might take for the family to do just one of those things within the day.

With rare diseases and disabilities, you see a lot of different doctors and therapists. You’re given a whole bunch of goals and treatment plans from each one, and the amount of work combined is often overwhelming.

I’m very aware of the guilt clients and parents can have when they don’t accomplish what they were supposed to do. Am I doing everything possible? Should I be doing more?

BLOOM: How have your thoughts about disability evolved?

Laura Howson-Strong: For the last decade I’ve had a firsthand look at how deep the roots of stigma around disability are—the ways people judge those with visible and invisible disabilities.

My disability is primarily invisible. I’m still getting used to being yelled at by strangers for parking in the accessible parking spot. Or trying to figure out what to say to people when they ask: ‘Does your husband regret marrying you?’

I’ve had the experience of crossing the street in downtown Toronto and falling, and I was surrounded by 15 people, and not a single person stopped to help me up. I had to call out ‘Are you kidding me?  have an invisible disability and I need someone’s help.’

I thought I had an understanding of the stigma of disability. But until I became disabled more visibly, I had no idea.

It makes me consider how I build the skills clients and families will need in the health-care system, and in bigger-picture society. Things like advocacy, decision-making, speaking up and resilience.

BLOOM: Do you have any personal advice for youth who feel stigmatized?

Laura Howson-Strong: Trust yourself. Trust your instincts and keep trying. Remember that it’s okay to not be okay sometimes.

Remember that you're not alone. Growing up thinking 'Am I sick, am I not sick?' and then on the other side, having two rare diseases, I've often thought 'Oh gosh. I'm so alone.' But it's important to remember that even if people aren't going through the same thing, there are so many commonalities, so many ways we can come together as a community and group to support each other emotionally.

One of the best things for me is saying 'It is what it is.' I can't control the outcomes, but I can control how I react to it.

We can’t do the health system alone. We need to reach out for help.

BLOOM: How can you find support when your condition is rare?

Laura Howson-Strong: Consider looking up online support groups and communities for disability and rare disease. You could also ask for help from other people in your life, like family, friends, teachers or your doctors or clinicians. There are great youth mentors here at Holland Bloorview. They may not have the same rare disease diagnosis, but they do have firsthand experiences of disability within the health system and the community.

BLOOM: What could we do as an organization to better support families affected by rare disease?

Laura Howson-Strong: At a basic level I wish there was more acknowledgement of rare disease, and access to services. In the health-care system, having a rare disease can restrict your access to clinics, because we don’t fit into the clinic criteria or share the same diagnoses as typical patients. I’d like to see a Holland Bloorview support group or information night for families affected by rare disease.

BLOOM: I would imagine we have hundreds, if not more, families living with rare disease. Jennifer Brea’s film Unrest is creating a lot of buzz about people with rare, chronic illness who are dismissed as being stressed out or mentally ill. What was it like for you to watch that film?

Laura Howson-Strong: Because I haven’t spoken out about my journey through mental illness to rare disease, it was really interesting and validating to hear my own experiences through someone else’s words and thoughts. It really made me feel like I’m not alone in this process, even if the end result is not the same diagnosis. There’s still so much support and love and community that we can give and provide to one another.

BLOOM: There’s a scene in the film Unrest where Jennifer Brea’s husband talks about how their life can feel quite normal and good when they’re on their own. But when they go out into the world, people are constantly reminding them that they aren’t able to do things that their peers are doing.

Laura Howson-Strong: One of the hardest things for me is when people look in and feel sorry for me. Or feel my life could be better. Or feel this can only be a negative thing in your life. Having a rare disorder absolutely turns your life upside down, and things that you wanted, or had planned for, don’t always turn out the way you hoped.

But for every difficult memory I have of my health or the health system, I can think of incredibly positive or funny experiences. Some of my greatest assets have been developed because of my rare disease—like my strength and self-determination, to the point of stubbornness, and my ability to problem-solve. I wouldn’t be the person I am today without the difficulties and challenges I’ve faced.

My disease is progressive. Knowing I may not look the same way in five or 10 years impacts my goals, and what I truly want to spend my time doing. What ultimately matters is I have a family and friends who I love, and I do things in my day that are important and meaningful to me.

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New hub to address developmental disabilities, mental illness

By Louise Kinross

The Azrieli Foundation has given $10.4-million to the Centre for Addiction and Mental Health to create the first centre in Canada to support adults with disabilities like autism and Down syndrome who also have mental illness.

“A lot of us have anxiety and depression,” said autistic advocate Daniel Share-Strom at an announcement at CAMH today. “Why wouldn’t we?”

Daniel described his world growing up as one where the speed and volume of learning, combined with social demands, was too much to cope with for someone who had trouble reading social cues and managing sensory information. He was always being corrected, he said, which led to a “pervasive sense of being judged all the time’ and of feeling ‘broken’ and ‘not capable.’

Daniel noted there are few adult psychiatrists who are skilled in working with people with autism, and they’re almost impossible to access due to waitlists. As a result, his mother had to purchase private services for him, at an hourly rate six times her salary. “There’s no off switch to these challenges when you turn 18,” he said. “I have difficulty finding help on my own when I feel hopeless. We need strong advocates when we’re immobilized with doubt.”

According to research from CAMH and the Institute for Clinical Evaluative Sciences, 45 per cent of about 65,000 adults with neurodevelopmental disabilities in Ontario have a mental illness, and six per cent have addiction. Due to a dearth of services, a study published in the Canadian Journal of Psychiatry found that almost half of hospital admissions for Canadian adults and teens with developmental disabilities were related to mental illness.

“There are no services that provide the continuous, comprehensive care necessary for this population,” said Naomi Azrieli, CEO of the Azrieli Foundation this morning. “This is the most vulnerable population in our healthcare system.”

The new Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health will provide better care, research and training in the field. It is being directed by Dr. Yona Lunsky, a psychologist who leads the Health Care Access Research and Developmental Disabilities Program at CAMH. Yona has a sister with a developmental disability.

Yona has led a number of studies evaluating interventions for reducing depression and stress in parents of adults with developmental disabilities. Naomi said that families are the “first level of care” for adults with disabilities, and that they are not being supported. “The normality of constant worry and anxiety becomes a backdrop to everything,” she said at the CAMH announcement. Naomi has a brother with Fragile X syndrome and said the family's personal experience played a role in the decision to fund the new centre.

All of the speakers spoke to the need to better support adults with neurodevelopmental disabilities—and their families—at a much earlier stage.

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Raising a disabled child in an abled world takes a toll

By Louise Kinross

Today is Bell Let’s Talk day and we want to join the dialogue by talking about mental health and parenting children with disabilities.

Over the last decade, studies show that parents of children with a range of disabilities like cerebral palsy, autism and Down syndrome have higher rates of depression and stress than other parents.

This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and carers of children with disability.

Consider some of these contributing factors. 

Parenting a child who is devalued and marginalized in our culture can be heartbreaking.

Parents of children with disabilities often have to fight to have their children included in everyday activities and regular school programs. Advocacy is time-consuming and emotionally exhausting. It's sad when your child struggles to make friends.

Parents may not be able to get the therapies their child needs covered publicly. Raising a child with a disability costs more. Often times, one parent needs to be at home.

Some parents have experienced many traumatic, life-and-death situations with their child. Others have been with their child through dozens of painful surgeries and gruelling months of rehabilitation.

Lack of home-care nursing and the need to care for a child around the clock can be physically exhausting. See Parents of ventilated kids risk own health due to sleep loss.

It’s sad when many people don’t delight in your child the way you do, and see their beauty, value and wholeness.

Recently, we’ve seen some exciting studies about interventions that can reduce stress and depression in parents like us. For example, in the last year we’ve written about three CAMH studies showing the benefits of mindfulness, self-compassion and acceptance and commitment therapy. The most recent: Accepting emotions reduces depression and stress in parents and Self-compassion may fuel parent resiliency. In 2014 there was this Pediatrics study: Peer-led groups treat distress in parents of kids with autism.

Holland Bloorview's Dear Everybody campaign aims to help the public understand the experiences of disabled children and their families, and to reduce stigma.

In light of Bell Let's Talk, I asked parents on our BLOOM Facebook page this question: “What would you like the world to know about mental illness and parenting children with disabilities?”

Here are some of the responses (edited for space).

Post-traumatic stress disorder is now recognized in first responders. Living through repeated life-and-death situations with your own child takes a toll.

The world should know that we worry constantly and that it can be exhausting. I love our daughter to death and she brings us so much joy, but the stress and worry about her future can be debilitating. Except—it actually can’t be, because you just carry on. You have no choice. I worry that this reality takes a toll.

Hopes, dreams and fulfillment for our children are waylaid for doctor appointments, constant phone calls about denied necessities, hospitalizations, Emergency visits, sleepless nights, loneliness, lack of freedom, but most of all guilt. Did we do enough? What did we forget? Are we paying enough attention? The list is endless, but at the top of that list should be FEAR. Who will be there to carry on for our child when we can’t?

I have never gotten over the trauma of our daughter’s early birth and the subsequent turn she took after birth that led to her disability.

We may always look like we have it together, but placating us with ‘You seem to be very strong’ pushes us further into the dark and away from help. We need proper assessment.

Don’t leave it till we fall off the rails. Studies show that parents like us have higher rates of depression and anxiety than other parents.

I took a physical for insurance and was asked ‘Why are you on an anti-depressant?’ I simply stated: ‘I’m a special-needs parent and I’m always advocating, praying, teaching, learning, and I must cope somehow.’

There is the everyday worry I have for her health and wellbeing, both physical and mental. I constantly worry about what happens to her in the future. Will I be well enough to take care of her, or will she be able to live a somewhat independent life? Oh, and let’s not forget the worries of possible abuse of my girl—physical, mental and sexual. Our lives are mentally exhausting!

Please leave a comment about your experiences with depression and anxiety and strategies you use to help yourself stay healthy.

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Share your mental health story on Bell Let's Talk day

By Louise Kinross

With Bell Let's Talk day coming up Jan. 31, I'm gathering comments from parents that BLOOM can post anonymously on social media that day.

What would you like the world to know about how raising a child with a disability in our culture affects your mental health?

More than a decade of research shows parents of children with a variety of disabilities have higher rates of depression and anxiety than other parents.

What are your mental health needs, struggles, hopes?

I'm looking for short comments that we can post anonymously on BLOOM and its social channels on January 31.

Leave a comment here or e-mail me at lkinross@hollandbloorview.ca. Thanks!

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In dark times, reaching out

Our new A Family Like Mine video features a remarkable mother who wants to break the silence around mental illness.

Leomina Valderrama has two sons: Bryan, 22, and Brendell, 15. Since Brendell was born with cerebral palsy, seizures, and complex medical needs, Leomina has dedicated her life to his care. In recent years, her husband Gilberto struggled with depression. Leomina reached out to social worker Barbara Germon at Holland Bloorview to help her cope. Last April, her husband died of suicide. "My heart wants to reach out to those who are going through what I've been through personally," Leomina says. "There is help available when we don't stigmatize with the silence of mental illness, and raising a child with a disability is a challenge, but there is joy that comes with it." Here she talks about strategies to build her resilience as a single parent and move forward, as well as her fear of who will care for Brendell when she can't. Bryan talks about what he's learned from Brendell.

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