How Our Journey Began

Bradley was born in 2003. Pregnancy was fairly typical, unfortunately, we had quite a rough delivery and they ended up taking him via Emergency C-Section due to lack of oxygen. Still, we thought everything was OK. The weeks and months passed on and we thought things were going smooth until his 1 year well check. He wasn’t walking yet. In fact, we had just got him to start crawling by literally moving his arms and legs for him across the floor. His pediatrician at the time re-assured us that “all kids will catch up by 2 years old”. Time went on, and we continued to try to encourage Bradley to walk. He was finally walking at two, but not speaking at all. He could say Mama and Dada - that was it. At his 2 year well check, we were referred to Early Childhood Intervention. That is when therapies started, doctors appointments, etc. Bradley made progress, but it was slow - very slow. At 3 years old, he began a specialized program at the local elementary school. Unfortunately at the same time, his seizures began. He began having absence seizures, which then turned into drop seizures where he could be standing right next to you and hit the ground. He wore a helmet to protect his head. After struggling to find an appropriate medication, we finally found a Level 4 Epilepsy Center and negotiated our way into their clinic. Bradley was then diagnosed with Lennex Gastaut Syndrome. We continued to try to manage his seizures with medication and also continued therapies to hopefully continue to progress. We had genetic testing done and tons of specialist visits, but from all we could tell is everything came back “normal”. It was odd because Bradley never fit into any box. He had some characteristics of a child on the Spectrum, but not some of the typical ones. He had some characteristics of a child with Cerebral Palsy, but his disorder seemed to be progressive, which didn’t fit. He had a very awkward gait and could not walk well. He was still not speaking well (mostly he would grunt and point). There really wasn’t a “box” for Bradley. Every doctor we saw, was always puzzled. So, we simply treated the symptoms. We worked with local doctors and therapists and did what we could. We worked with speech, phyisical therapy and occupational therapy. He received the same at school plus Vision Impairment and Orientation and Mobility due to his vision issues. Technically, his eyesight put him in the legally blind category for many years. I joked that if there was an “all of the above” button on the form, it would be easier to just check that. The years went on and we continued to treat his symptoms and deal with what was top priority at the time. When he was about 17, we underwent another round of genetic test and this time, we received a positive result. He has a rare genetic mutation called KIF1A. We were welcomed into that community and for the first time I felt like we were home. When I watched their welcome video about KIF1A/KAND, I was shocked - it was Bradley - to a T. Every symptom was him. We always thought they were not connected, but they were. Jason and I both do not carry the gene, so it was de-novo, an anomaly. Since the diagnosis, our day to day life hasn’t changed, although, we do know that his disorder is progressive. He has now been in a wheelchair for 5 years, but is still able to bear weight with complete support. We are determined to continue to work with him and help him to be as best he can be for as long as possible.

So, what brought ME here?

Well, as you can imagine, our life is chaotic. Jason and I both worked so, juggling, school, doctor appointments, a typical son and a medically complex child is exhausting and those are the physical needs. There is also the emotional part of my guilt that I “must have done something while pregnant to cause this”, and the constant worry if we were doing enough? Doing too much? Giving enough attention to Alex (our younger son)? Somehow, we have managed. It was the best we could do and it was with the help and support of our families and friends. We barely had time for ourselves, let alone each other. We were doing OK, but we were just treading water - barely surviving. Then about 3 years ago, I joined a program specifically for weight loss, but what it brought me was SO much more. It had a life coaching aspect that has changed my life. It has taught me to clear the clutter from my life, accept the circumstances, focus on the FACTS of life and not let my imagination/brain run wild to the worst-case scenario every single time. This has been life changing for me. I discovered that our brains are so incredibly powerful and even if the circumstances do not change, we can change our thoughts around them and it is such a release. Now, do not get me wrong - we have plenty of hard days. Days that I cry, days that I have to excuse myself and days that are filled with love and laughter, but my mindset has changed and I feel empowered. 1 year ago, I decided that I wanted to help other families like us, so that they could empower themselves to take back control of their lives regardless of their situation. I enrolled in a Health and Life Coaching program and became certified life coach. I am hoping that I can help you love your life and empower yourself.