Living With SMA

Dealing with the public and living with SMA is enough to make you loose your mind. We had another person quit working us recently to take on another job that would be better for her career. I don't have problems with people wanting to follow their dreams but I do get upset when they are dishonest and only use us. One of the questions we ask potential employees is, have you applied for any other positions? and if you have and you are hired for that position would you accept it over our position? We have had several employees leave us after answering that they have looked for other work but this is the position they want. We even go so far to inform the potential employee that this is a family you are working with and that we have a daughter with a terminal genetic disorder. We bring to their attention that we rely heavily on them to ease some of the demands for caring for a child like Shira and that this is not the place to take advantage of someone. If you want to take advantage of an employer to make money until your dream job comes along please do so at Starbucks or a company that can deal with high turn over and that is a less important job. People look you right in the eye and insure you that they are honest and that they would never do such a thing. Then, weeks later after lots of effort and training they tell you they got a call back from a job that they really wanted. We are seriously being tested here. Our level of patients for dealing with mediocrities has been taken to an extreme level.

I have to honestly say that the only people that really understand exactly what we are going through are people that are disabled, parents and caregivers of the disabled, or other people faced with or have been faced with life threatening illness. I've had a family member even tell me once after I suggested a video for them to watch on SMA that, "I'm not interested, it doesn't affect my life." I've had other's suggest that we should have no complaints as we made our own choice to care for someone this disabled when we also had the choice just to let her die. I have realized that though I live in the west, in a democratic society that there is still a mob mentality and that there is a lack of caring and positive attitude when it comes to quality of life issues and the disabled. We have people in positions of power controlling and pushing their belief systems on people that do not have the ability to affect immediate change to their direct circumstances and that they are forced to let their children or family members die based on powerful peoples opinions.

So, today people mostly suck! Again, we have found that we have experienced a great outpouring of love and support from where we least expect it and the least from where we most expect it. People often ask, "then what do you want, what do you need?

We have come to realize that when you mention support the first thing people think is, "they want money!" If you ever want to get rid of anyone really quickly out of your life just be bold and ask them to give you money, you can be assured you won't hear from them again. When I say support, what I am talking about is emotional support. Everyone gets on their computer every day and just an email or a quick phone call to let families know you are there is enough. Of course physical help can also be very helpful.

So this is a call to you. Pick up the phone or send an email to someone you know that needs it and keep on doing it. I know that from my work experience I could call 50 people in 2 hours. I did this almost every day to generate leads. Many leads became customers, many leads introduced me to customers and some leads became friends, some leads become customers and friends and remain friends. Its funny how many people can make phone calls for money but they find it extremely difficult to call people that need to be supported. One is fake, make believe, acting while giving someone support is the real you. All I can say is is that if you are not supportive to those you know it is a reflection on you. Think about it. Everyone knows someone who is old, fragile, sick, or grieving. If you are close to these people in good times but aren't there just to listen in times of bad how does that look? Those people you do that to will know you are not friends, and that in reality, you are only shallow acquaintances.

I had an epiphany the other day. There are so many problems in our medical and social systems regarding the care of the elderly and children. The problem is no one cares and no one is being supportive of these adults and children. The viscous cycle of lack of love and support is taking place under the roof of these care facilities and it is a mirror of our society as a whole. It used to be that the elderly were held in high esteem and respected as people of knowledge while the young were depicted as our nations future, but our corporate minds have been branded through extreme marketing to measure ones worth by wealth alone. Unfortunately, chivalry, gallantry, and the lessons of King Arthur and his noble knights have been lost to the status quo, conventional wisdom, logo and instant gratification by the acquisition of empty material objects.

Have a nice day :)