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The Journey to Finding What Works for You, by Lynda Kazairwe

I am a mother to three wonderful boys in whom I am well pleased. They are 8, 6, and 4. They are all smart, witty, funny, energetic, loving boys; they are my light and my ‘why.’ We are also blessed with a great network of family, friends, church members, and medical teams.

Five years ago, we had a regular pregnancy, nothing out of the ordinary, went to all visits and had a regular birth. I have video of my son shortly after birth crying and kicking and flaying his hands as babies typically do. He was a sweet cuddly baby who loved to lay down. It was winter-time so we were usually bundled up. I assumed his tendency to lay down quietly was probably due to the temperature and the restrictive clothes. He also cried softly and not too often which was different from his brothers who cried quite a lot at about the same age. My son did not show symptoms right away. There were no screenings at that time during prenatal visits, therefore it was not possible to detect anything early. When our son was a few weeks old, we noticed he cried softly and not often. Shortly after his four week checkup, his father got increasingly concerned that he seemed lethargic; at this point, it was obvious something was not right. I was certain that the doctor who saw him at the four-week check-up would have noticed if anything was amiss.

We returned to seek medical advice a few days after the four-week appointment. We saw a different pediatrician, who immediately sent us to the ER. That night was one of the longest, most stressful nights of our life. It was obvious something serious was suspected - but we were kept in the dark for almost 24 hours. The tension was unbelievable. When the tests were complete and the doctors gave us their diagnosis, we were suddenly overwhelmed by information. We were given so much information in the space of thirty-sixty minutes; it felt like no one was concerned about our emotional state. At some point I fled the room with what I imagine was a panic attack as in the middle of someone talking to us. Their goal seemed to be to complete their mandatory tasks, check off boxes and discharge us before the close of the day. We were informed about mortality rates and all manner of possible complications. Before we even understood what the primary diagnosis was, a pulmonologist came to speak to us about all of the signs and rates and equipment we needed to use immediately (some were even delivered to us in the hospital). We had more equipment delivered to us as soon as we arrived home. Honestly, at that point it seemed so unnecessary and confusing. We are grateful that at that point and even to date my son independently breathes without equipment. To say it was overwhelming is an understatement; I understand that there is protocol and reasons but it all felt so mechanical and overwhelming.

Shortly after the diagnosis, my son was enrolled in a clinical trial at Boston Children’s Hospital. It was like a miracle from Heaven, a light in a very dark tunnel. Connecting with the teams there has been one of our greatest resources to date. Enrolling in drug trials required proximity to Boston. Later, after setbacks with subsequent diagnoses which required surgery, we had extended in-patient stays with respiratory infections. As a result, our family was physically separated for over two years as we worked through the logistics of it all. It was painful to be away from my older (yet still quite young) children, but it was the right decision. They were surrounded by family and friends and continued with school. They were happy and experienced stability. They travelled as much as was practical to visit, and we had at least two video chats daily.

We decided that I would resign from my full-time job as it was not geographically or otherwise possible to continue at the time. This was necessary given the task ahead - but it was not easy. Retrospectively, I was just about ready to leave and needed the break as I needed to unplug from a workplace that I had outgrown. I connected once again with the things that mattered most to me, and for the first time in over a decade, I made time to reflect on life amidst the chaos.

Physical separation from my wider family was difficult. My siblings and parents had always been my rock and I had never appreciated just how much I relied on them until then. I took comfort in knowing that they spent more time with my children; the time they spent with my sons is priceless and brought them all so much closer. I never once worried about their well-being, and my heart ached for them, but they were in good hands. We have been fortunate to build new support systems, particularly at Church, and as a Christian, my family needed to connect to believers.

We had a great team working with us in the birth to three-year programs whose gentle support helped us move along further not only in the therapies but also in letting us know what is available. Birth to three is a great program.

When I was ready, I was introduced to PATH CT, whose mission is to connect and empower families, children, and youth living with disabilities or special healthcare needs through support, education, and advocacy. I was able to connect to families who had received a similar diagnosis two decades ago. Speaking to them was the help I didn’t know I needed; it finally felt like I had found someone who spoke the same language. The person I spoke with set me off on a path of empowerment and community. I was encouraged to become a parent listener and have since connected with families and been able to share joys and hard times and resources with other families from the US to as far away as Pakistan.

Through PATH CT, I was encouraged to join a class, Partners in Policy Making. The goal of Partners in Policymaking is to foster collaboration among people with disabilities, family members of children with disabilities, and policymakers at national, state, and local levels. Partners in Policymaking training teaches people to be leaders in shaping policy for people with disabilities and their families. This nine-month class was particularly useful to me because I struggled with feeling ill-equipped to advocate for my son. I did not know his rights or the resources out there. Since completing this class, I can advocate for him competently, and navigate health care and school systems better. I also connected with parents and self-advocates whose journeys inspired me to keep going. We also had the opportunity to make presentations to state senators, which was a validating experience. As an advocate for my son, I found participation in Family Advisory Groups (organized by the Children’s Hospital) to be quite helpful as I was able to articulate the changes which would be helpful directly to the parties who can do something about it.

Over time, we have had a lot of support in getting what he needs, and we have also had to advocate strongly for him. Unfortunately, we have faced situations when decisions made by medical personnel were dismissive, unfair, and discriminatory; fortunately, we have found alternate ways to get what he needs through advocacy and networking - often even better than we would have anticipated.

I recommend that families find what works. It will look different for different families. I am typically introverted and have never been keen on sharing my personal life on social media; I found that smaller communities worked better for us. However, I have found important information and resources from some social media and therefore I am grateful to families that share.

If your family struggles to understand or communicate - either because of emotional state or language or other barriers - find someone (a family member, a friend) who can help you bridge the gap, or request for a better time to discuss the matter. Speak up with medical personnel, and ask as many questions as possible and seek as many opinions as needed. I encourage you to persevere and empower yourself as much as possible. Understand diagnosis, treatment plans, and resources. Make time for self-care as you cannot pour from an empty cup.

Our son is now four years old. He is a bright light, smart and funny, and kind. He is very friendly and makes friends wherever he goes. He loves to chat, is curious, and asks a lot of questions. We are blessed that he has overcome all the setbacks and has bounced back from terrible respiratory situations that PICU doctors didn’t think he would. Despite several extended hospitalizations, we are still standing.

Our son is in pre-school and enjoys his brothers’ company the most. During the pandemic, his father and I decided that it was time to reunite the family and it has been such a joy. We love to take trips, he loves to go to his brothers’ sports games and practices, and he loves school and his therapists.

Our family has grown even closer. We have gone through so many difficult changes and challenges together and have come out stronger and better, more empathetic human beings overall.

Resource Summary
The Journey to Finding What Works for You, by Lynda Kazairwe

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The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

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