A Mother's Wish: Part 1

Navigating the special needs world is a journey unlike any other. Corrine, Maya’s mother, dedicated her life to securing services and advocating for Maya, showcasing the strength and resilience required to face these unique challenges. Maya, with her infectious smile and unwavering spirit, has always been her mother’s light. As Maya ages out of the school setting, her mom's wish is for her to achieve as much independence as possible and eventually thrive in a group home setting.

The path to making this dream a reality is fraught with obstacles and uncertainties. The world of special needs is a complex web of medical appointments, therapy sessions, educational planning, and constant advocacy. Every step forward often comes with a new set of challenges, and the emotional toll can be overwhelming. Yet, amidst the chaos, there is also immense joy and profound love.

My sister-in-law's determination to ensure Maya has the best possible future is truly inspiring. She navigated the system with grace, always searching for the right resources, support, and opportunities for Maya. It's a daunting task, but her unwavering belief in Maya's potential kept her going. Corrine is the reason Maya was able to master skills that we were once told she would never be able to achieve.

The fight Corrine put up to get Maya on Medicaid and secure the services she required at home took years. While going through paperwork, we saw the pile of papers denying services for Maya, but Corrine kept pushing and advocating.

When we had to take over as guardians of Maya after Corrine passed, we were at a loss. Everything happened so fast, but thankfully Corrine had battled to lay out the blueprint for us to follow. She created Maya’s IEP goals for all to understand:

“Live a life as independent as possible in an environment where Maya is safe, part of a community, and can maximize her potential. It is my hope she lives in an assisted living home possibly with other peers, participating in interests and activities such as Special Olympics, and possible employment within her community. That she develops the skills to read, communicate, and interact with friends and family through various means - in person, phone, video, or possibly even social media. My wish is that Maya be happy and healthy, actively engaged, have social interactions, and be a continuous learner throughout her life.” – Corrine Murphy

These goals for Maya were created when Corrine was still around, and we have made it very clear that they are not to change. Maya was thrown into a new school district, a new household, essentially a new life, and we are still adjusting to this day. For Maya, it’s as if her diagnosis is constantly evolving along with puberty, the presence of seizures, and this change of lifestyle that we see a new kid weekly.

A neurotypical child would have a hard time losing a loved one, and we were unsure how to explain it to Maya. Corrine was in and out of the hospital so much for treatments, and Maya would stay at our house sometimes during those treatments or with other family and friends, that in the beginning, Maya assumed Mama was at the hospital. Thank goodness Corrine read the book “The Invisible String” to Maya every night. When Maya asks for Mama, we would tell her “Mama is with the angles” and follow it up with “Remember, no matter where you are, you are always connected”. Since we live close to the beach, we use that as a space for Maya to “visit” Corrine. The beach was their happy place.