2011…..the year that changed our lives forever. The year we unexpectedly joined a ‘club’ that we never even knew existed. Witnessing things we never believed were even possible to survive, mentally or physically. Life has evolved over the years as our children have grown but the profound effects still ring through, the memories as if we lived them just yesterday. 

Life is…..

Seizing every opportunity possible but meticulously planning for every single eventuality.

Developing independence but in ways we never expected to navigate such as tube feeding, medication and being symptom aware.

Being open to questions about growing up but finding the strength to answer the most heart wrenching ones honestly.

Being strong, firm and honest when medical procedures need to happen but breaking inside each and every time.

Advocating and fighting for your child on every level every day but facing increasing,  judgement, questioning, justification and complacency as the years go by.

Above all else, the pride, the mental and physical exhaustion and being in awe of your child every single day as they navigate a world that is tougher for them than most – even if this is largely unseen by others!