November 15, 2011
To all of the families and friends of the Down Syndrome Partnership of Tarrant County:
Effective immediately, ******** will be taking over the position of New Parent Packet Coordinator; while it may come as a surprise to most of you, she and I have been discussing this for several months now.
It has been my greatest honor to have been entrusted with this “job” for the past 8 years, but as with all things, the time has come to pass the responsibilities to someone new. While I will miss being one of the first people that a family contacts when their child gets a DS diagnosis, I know that future families will be in good hands in *****’s capable care.
For those of you who may not already know, I have been having health issues for the past 18 months – in March, 2010, I went to see an ophthalmic specialist about a drooping eyelid. I thought I might be getting some minor plastic surgery; I left her office with an appointment to see a neurologist instead.
In the summer of 2010, I was positively diagnosed with Myasthenia Gravis – a neuromuscular disorder which saps a person of their strength. While there is no known cure for MG, it is almost never fatal, and there are several medications that are very helpful in keeping the disease in check.
Generally, if a person is diagnosed with Ocular MG – as I was – the disease will progress to full-blown MG within 1-2 years. Once I started doing research on MG, I realized (and my neurologist confirmed) that I had been having symptoms for several years before I was diagnosed; the tiny problems that I had been attributing to age/weight/lack of exercise were actually due to undiagnosed MG.
I’ve known in my heart for several months now that it was time to have someone take over the New Parent Packet Coordinator’s job; I’ve been trying to “bargain” with my biology, but I’m finally at a point where I have accepted the reality of my diagnosis. It doesn’t take much to wear me out these days, and I have to budget my strength accordingly.
This “job” has given me more joy than any of you can possibly know – I have had an opportunity to meet so many wonderful families (even if it is just over the phone in some cases). The happiest thing for me has always been hearing from people a few months after our initial conversations and hearing how much fun they are having with their new baby.
I would like to extend my thanks to the partnership for allowing me to continue doing this job for all of these years – it has been an honor and a privilege to have been entrusted with this responsibility. I have seen the Partnership grow by leaps and bounds during my tenure, and it is heartening to know that so many of the families who were reaching out for reassurance and support just a few short years ago are now assuming leadership positions within this wonderful organization.
The Partnership’s future is in the best of hands.
All my love,