By Jenice Watson, Executive Director, A Buddy Just Like Me
When West was born, I knew something was different. West's body could never get comfortable, he wasn’t hitting milestones, his head was flattening, and he cried from morning to night. I felt crazy. As a worried, sleep-deprived mom, I googled and did anything to help the symptoms I was seeing including acupuncture, chiropractor, holistic and medical interventions. I went through 3 pediatricians and 2 therapists, but no one listened. Finally at the last physical therapist, I handed her an inch thick paper stack including medical records, doctors’ appointments, and journal notes describing what and how West was doing. With tears in my eyes I said, “Help me!"
By the time West was able to get his MRI he was 6 months old. The day he got his MRI I skipped into the hospital; I was not wanting a diagnosis, I just wanted answers. As my sweet baby came out of sedation, the radiologist on call came in and said, very straightforward and direct with no amount of sugar coating, “He has cerebral palsy, scarring of the brain.” So many questions darted in my mind, I remember asking him if it was something I had done, he told me the scarring was enough to tell it had been most likely a stroke in utero, nothing I could have done or prevented. I remember asking him, “What does that all mean?” He was frank when he said, “We will just have to see what happens.” As he exited, my mind was zooming like a high-speed chase on the highway. I cried. I sobbed. I held West. It felt unreal. That night, West literally stopped crying, it was like his little heart said, “You did it Mom.”
For weeks I googled, which I never would recommend to any newly diagnosed individual or family. My heart was breaking and mending all at the same time. My mind was spinning with fear-based “What ifs?” and “Why?” all day and night. Somehow in my grief, I got to work; appointments, follow ups, therapies, day after day after day, I was almost in a robotic trance. One foot in front of the other, if I looked further, the unknown became too heavy, the mental game of could-have, would-have, should-have became rage, so I settled in the fog that I now know was grief.
I tried to ask questions, connect to others via other social media platforms, but would get lost in the algorithm. My story was not their story, and my time was not even mine. Between the rigorous appointment circus and balancing what was left of our “normal” home life, I couldn’t breathe, let alone catch a playdate. I can’t begin to describe the loneliness. Unless you have lived the slow-motion reality that comes with a diagnosis, you can’t really understand the magnitude of isolation. As grief carried its weight in every aspect of my life, I still had an energetic 4-year-old son and a baby to care for. I continued to work full time and my partner worked the graveyard shift overtime—we were both overwhelmed, sleep deprived and a little bit on the edge of delusion. In this fog, we got a puppy. Isn’t that what everyone does? I laugh now thinking about it.
One rainy day, we took our puppy, Leo, and two boys to the park. We had not been together for a long time, just the four of us plus a puppy. West was asleep in the backpack carrier as Ben pushed our oldest on the swing. As the rain fell, so did my tears- this was normal for me now. I held Leo so he wouldn’t get muddy. Just as I dried the last tear, two women came from the bathroom, straight towards me.
“We love your dog,” one said. I thanked her, as they happily pet him. The words burst out of my mouth, “We got him as a potential service dog for our son who just got a diagnosis.“ Her hand on my arm stopped my words, and I thought for sure she could see that insanity was now my name. I smiled awkwardly. She looked right through me and said, “Did he have a stroke in utero?”
I said, “Yes.”
She said, “Does it affect his left side?”
I said “Yes.”
By this time, tears were rolling. Her voice went quiet and I’ll never forget her words. “Mine is 19, plays the drums and is in college. If you don’t limit him, he can do anything.”
My heart swelled. I could hear all my thoughts, heartbeat, and tears in my throat all in unison. With a quick squeeze, as I cried, they left. That single connection helped me realize, as slow motion as the world feels, I was not alone. Someone else had experienced this, someone else had been where I am. Her words helped me realize I could do this, for West, until West could do this for himself. The wonderful physical therapist who had heard my plea, helped us find the people West needed most - a wonderful neurological staff and an exceptional occupational therapist. The endless therapies did not stop, the hard work had just begun, but I had a new sense of hope starting to fill the endless holes of grief and disbelief that a diagnosis can bring.
Every expected date-guided milestone was erased, and West was allowed to grow and develop at his own pace. Each milestone he met came with sheer lottery-winning excitement. Waves of grief still well up with every new challenge, but we continue to press on.
Fast forward 5 years and West started to feel his difference. He started to recognize his own physical limitations, and so did his peers. Over and over, he would say he was different, knowing what he meant without wanting to put the adult words to his reality, I asked him once more.
“What do you mean?”
“No one is like me, Mom,” as West lifted his affected left hand, “LIKE ME, I need a buddy just like me!”
With that wish, our mission was set. I realized West was needing a community too, a connection he had never before had. The feelings from that day in the rain, the connection with a stranger that had changed my whole perspective - my boy deserved this too. If we needed this connection so badly, then others needed it too, my now excited “what if’s” and “why’s” became the catalyst to the mission of our nonprofit.
We created A Buddy Just Like Me; Finding Connection Within A Diagnosis, to bring together all avenues of a diagnosis. A Buddy Just Like Me helps individuals with a diagnosis, their families, and caregivers find and create meaningful connections. Our non-profit organization was created with the intention of connection. We serve a community that is most in need, connecting people in this world with people in their similar experience. With A Buddy Just Like Me, connecting can happen on several levels: for the person with the diagnosis (FIND A BUDDY), a person with a diagnosis who has lived with the experience and wouldn't mind mentoring newly diagnosed people and also would like to find connections "buddies." (MENTOR A BUDDY) or the caregiver to whomever is diagnosed (CAREGIVER TO A BUDDY).
Our app is coming out Spring 2022, and we will be connecting as many members of our non-profit as possible! As a nonprofit (501(c)3 pending) we rely on generous donations for our always free services. Our long-term vision is to continue to expand our effort to create safe connections, create learning and healing opportunities for anyone needing connection within a diagnosis. Our outreach includes families, siblings, individuals, caretakers, and mentors - no matter the diagnosis. Everyone has a place with A Buddy Just Like Me: all ages, all diagnoses, all chapters of life.
Through the efforts of A Buddy Just Like Me, West was able to meet his first buddy with cerebral palsy. Baylor and West lived 3 miles away from each other for 5 years, had the same physician and physical therapist and didn’t even know it! Their excitement and pure joy at meeting each other is what we hope to create for countless individuals with any diagnosis. Their newfound knowledge that someone else knows just what they are going through has changed their lives, and we know this connection will change numerous other lives too!
Our vision with A Buddy Just Like Me is to have our services used in every hospital, school district, and nonprofit organizations serving the special needs/ all abilities community. We will safely bring together the connections that cannot always be so easily made. We know the need is there and we cannot wait to connect you. Visit our website at abuddyjustlikeme.com or follow along on social media @abuddyjustlikeme.