SEPTEMBER 9, 2019
Well, today was one of the first events in constructing our Wellstar promotional campaign. Patricia R, Wellstar's Public Relations Director in LaGrange, GA, arranged a photo-shoot of me with my family. The backdrop was beautiful and the terrain surreal. Until the challenges that the average person does not see become quite visible. And so... my support system! What you may not know is that muscular dystrophy begins with the smallest changes; ones that are barely noticeable to just about anyone but me. Well, except for my family. They notice the small changes in my walk, the increasing struggles I have with picking up things that I've dropped onto the floor. (The bending isn't as hard; it's the getting up part that's hard... and gets increasingly harder bit by bit.) Sometimes I feel guilty having and using my Handicapped Hanger when I shop. What you see is that I have a bit of trouble getting out of the car, but it's not something that may really catch your eye. You probably notice me, after I've parked, walking away from the car. I look like I walk pretty well! "Heck", you say, "Why does she have a handicapped parking spot? She looks okay to me!" What you don't see is how hard it is for me to pick up my legs to walk; how hard it is for me to keep my knees from buckling. Or the pain that comes from the strain on my knees and back because my muscles in the lower half of my body are failing.m I admit, I can make it look like I'm just like everyone else... What you don't know... is how hard it is for me to do that... So... back to my support system... I've been able to hold it together for the last 2 1/2 years. I've been able to keep up with the house work, shopping, dinner, laundry, homework, football games... but all that has changed. Dinner time became a bigger and bigger stressor for me and my family. In a two working parent household, someone (I'll let you ladies guess who...) is generally in charge of getting dinner together. But week by week, it became harder and harder for me to do that. You see, I'm a nurse in a busy pulmonary office by day. And I take great pride in my work. I work with a great team and feel that it's my obligation to be sure that the patient schedule I'm responsible for runs as smoothly as it did before my m.d. And the patient schedule ran as seamlessly as possible. I always want my patients to come to the office and see someone who was focused on them, who made them the priority and left them feeling like someone cared. As you may suspect, many of them are critically ill and as a nurse, I have vowed to do my best to help my patients, and their loved ones, through their most difficult times. As you can imagine, it was a tiring goal even on the best of days... but now... my will is as strong, but my might is not. Coming home to the chaos of no dinner with a hungry family facing an exhausted mom was just becoming... too much. I am fortunate enough to have a mom and step-dad (Bob) who love all of us enough to leave their lives in New Jersey and come to Georgia to help out. Between us, we've divided up the weekday dinner schedule: Hubby takes dinner on Monday, Tuesday and Thursday are Mom & Bob days; Wednesday is Joshua, my oldest son's day and Friday, Saturday and Sunday? Well, that's a toss up! We enjoy the weekend without the weekday exhaustion. Joshua also cleans the house on Wednesday's and occasionally, mom comes down and hits up the bathroom for me. I grocery shop on line and drive-in/pick up to help me manage the weekly food grind. All in all.. .... I'm lucky to have such a great net around us. It lets me spend my energy on the things are important to me. And my family is at the heart of it all.