As parents we have seen some horrifying things. Some truly truly heartbreaking experiences. We have had the joy of mother/father-hood aggressively stripped away from us. We have held our daughter down for things more painful and traumatizing than you can imagine. We have held her screaming for hours or even full days. We have seen her unconscious. We have cried with her and cried in the shower after she’s fallen asleep. We have tried to wash away the guilt of the treatments or procedure that we have had to do to her.
we have locked myself in the bathroom in hospitals and hotels so that she couldn’t see my crack and fall apart. We have experienced hell with our daughter.
All of these things have shaped who we are today. We will never again be the person who has never seen their daughter pass out. We know what it’s like to question your child’s future.
We hope, maybe one day they’ll figure out how to help our child, maybe science will finally catch up.
Facts:
- There is no cure for Addysons illness
- Treatment is treating/controlling symptoms–a diagnosis will NOT change the treatment
- She is receiving the best treatment
- We have an incredible team of doctors
- No answers means that there may still be a defect in a gene that isn’t one that is readable yet. There are 20,000 genes and only about 6,500 are known to scientists.
- Every two years they can re-run her exome against newly researched/discovered genes
- Every few years they can re-run the tissue already taken from her muscle biopsy against new discoveries.
- Answers will not magically repair all of the trauma we’ve been through
We have become more seasoned in this journey but our anxiety and trauma is very real and one rough day brings it all back to the Forefront
Today it all came flashing back… Gi bug, obstruction, emergency surgery, which Dr do we consult, which team, who can help? All the questions came racing through my mind. The biggest one… Who can help her feel better. At the end of today I still don’t have the perfect answer. 😢 but I’m trying and we will keep trying.
Beaming with hope 