TJ here. I’m a warrior Dad and Also the Executive Director of Ben’s Friends and a Rare Disease Patient myself. I’m also as I type this getting ready to take a true warrior - MY WIFE - out for dinner to celebrate our 47th wedding anniversary. You see I not only had to retire as a medical provider as a result of my own disease and at a low point came to Ben’s Friends. I have rare children. 14 to be exact. All of our children are adopted and all have special needs of one sort or another. Neurological yup, Cancer, yup, auto immune Check. Diabetes of course kidney disease too. We wouldn’t do it any other way, Now we never expected as the first 8 managed to grow up that some would marry and that we would end up with their kiddo’s due to disability, and interestingly enough the death of 3 of their spouses. BUT at last we see the end of those days only two left one 9 and one 11. Well make that three the 24 year old’s group home closed due to staffing problems and is wih us for a while…
Now I know this all sounds ridiculously false, but its true. My wife and I CHOSE this as ministry and life. (every kid deserves a home and family) Most of you did NOT choose this. I was a medical Professional, my wife an educator/special needs teacher. WE KNEW what we were getting into -or so we thought. We thought we had family support (they were mostly helpless but supportive, we thought we had agency support NOT Our Friends well I’m glad they were praying for us, but gosh it really have been nice if we could just go grocery shopping together (and call it a date)
My wife is not a warrior, she is a pit bull. Yet I have never seen anything but a smile. Seriously! What has gotten us through is other Rares, (for me) other parents and frankly peer to peer support from Ben’s Friends members. Welcome all. Be assured WE ALL GET IT and your privacy is important.
The disease is one thing. Not easy by any stretch, but day to day by far the most difficult. THAT we can help each other with. Resources whether its preparing 504 plans or looking for a lawyer are all things we have in common. No need to go where others have gone before us to coin a phrase.
We have some great things coming for you warriors please stay with us, but more importantly stay with each other.