Today, we {Oliver, his Private Duty Nurse, and I} are going into Chicago to a major city hospital for 2 appointments. Important appointments. Oliver has these appointments every 3 months.
Today, Daddy and I put in several hours of work between the two of us to get Oliver ready for these appointments; all of his medications & food prepped, oxygen readied, diaper bag & emergency bag put in van, etc. Then Daddy went to work at his "real" job.
Today, Oliver, his Nurse, and I will spend hours traveling in traffic to Chicago and back again for these important appointments...Oliver will enjoy watching his favorite DVD's during the trip there and back.
Today, I will encounter the same grumpy parking garage attendant, again, who refuses to understand why I don't want to Valet Park for FREE with their contracted Valet Service Company on Floors 4-6 since Floors 1-3 are full even though I've explained to him that what my son needs is HANDICAPPED PARKING right next to the Parking Garage elevator.
Today, Oliver's Nurse and I will push Oliver through this major city hospital, where many, many children with all kinds of medical issues receive treatment on a daily basis, yet still people will stare...some will even ask questions like, "What's wrong with him?" when they see Oliver's oxygen. Some will go out of their way to try NOT TO LOOK which is just as obvious.
Today, Oliver will endure a painless yet cumbersome, lengthy and important procedure he has had a countless number of times and still doesn't understand why he has to go through it at all.
Today, Oliver will have several Doctors and Nurses and Technicians interested in him throughout his 2 appointments and he is not interested in a single one of them.
Today, Oliver will not be able to communicate with anyone except me, his Mother and his Nurse...because no one else at these appointments knows Sign Language nor has tried to learn though they've known for over a year that Oliver is deaf and communicates through ASL.
Today, I will have to interpret everything Oliver says to everyone in the room, except for his Nurse, because otherwise they think he is just lost in his own little world...when really it is just that they have no knowledge of ASL.
Today, no one will offer Oliver and I a Medical Interpreter for the Deaf, even though it is the Law....probably because Oliver is "just" a child and I am there with him. Sad! What pressure for me!
Today, while we are at these 2 appointments, I will be waiting to hear from Oliver's Pediatrician about an entirely DIFFERENT issue going on that Oliver's Nurse and I have to have dealt with RIGHT NOW! {No Cell Phone Use While in Hospital/Dr. Office} hasn't applied to our family since May 12, 2004.
Today, Oliver, his Nurse, and I will come home exhausted; mentally, physically, and emotionally regardless of what the medical update is from these appointments.
After Today, I will be mostly be responsible for disseminating the new Medical information, good, bad; change or no changes; Reports, if any...to anyone and everyone who needs &/or wants to know. I will re-live the issues over and over again. The news may be good, bad, or no change from last time {which is still bad}.
After Today, together Daddy and I will struggle to explain complicated Medical information to several people who question us about Oliver over the next several days, weeks, months; We will get angry & hurt when some people downplay what we tell them; We will get emotionally & physically drained from telling and re-telling, sometimes to the same people, because they don't understand or simply forget what we can never forget.
After Today, there could be Medication changes, Schedule changes, more appointments at this city hospital, more procedures, or any combination/none of the forementioned except that we will surely have to go back for more of these kind of appointments at the same hospital.
After Today, Oliver has more appointments with more specialists for other Medical reasons and the cycle starts all over again.
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