It Never Gets Easy to Hear

I don’t know what other options we have. These words haunt special needs parents because for most of us, at some point in our child’s journey, in fact, usually several times, we here this. Whether it be about something as small as orthotics not fitting properly and being in between sizes, or something as big as organ failure, it always feels the same. That same gut punching feeling. Several times through out Madeline’s journey I have been told we were out of options, even in worst case scenario’s that her life would likely end soon. Does it make me angry? You bet your ass! Do I feel like asking them what the heck they were thinking telling a parent that? Sometimes, but at the end of the day I chose to change their minds with positivity and humility. By bringing my daughter back into the same hospital that sent her home to die, and not only allowing the doctors who said she wouldn’t survive very long to care for her but to learn from her. I have an outstanding relationship with her medical team. Despite using whole plant cannabis oil to treat her untreatable disease, because of our advocacy, because we chose to open ourselves up to them as a resource we have a comprehensive health plan which includes all her health care needs, including cannabis. 

Maddie is what I call stably unstable. Some days are good, and some days are downright scary. Blood transfusions, hospice, and a failing liver keep us constantly on our toes. It never gets easy waiting for your child to die but when you shift your perspective and realize that none of us really knows how much time we have and THAT is why we must embrace every moment of our life, then hope can really thrive.