Thursday, January 26, 2017


My wife and I are conditioned to wait for the; (not) proverbial another shoe to drop, but the next shoe to drop. As parents of a child with disabilities, we are conditioned for the unbelievable, the improbable and mostly the unexpected.

When times are quiet and my daughter Ellen is doing fine, we put up our guard, hold our breath and wait for the disappointment to spread across our landscape!

 Recently I enrolled my daughter in a new health plan, outside Obama Care but a great plan. It creates a network of providers that all hook up into a mainframe of sorts and maintains all her medical records. This allows a doctor who is treating her for an illness to immediately find her medical records online and make more instantaneous decisions and prescribe the right medications based on what he sees. This system is only found in New York State under the auspices of her agency, and it is supported by Medicare/Medicaid!

 There is one problem, however. You need to use only the participating doctors and clinics, and whatever other medical services needed who belong to the plan as it is slowly growing and gaining momentum.

Recently we went to a neurologist who at one point asked to do a complete medical workup for his records. My wife and I objected to this idea since my daughter is very sensitive and does not tolerate being poked by anyone. After voicing our objections to this plan things became quiet. The medical staff at my daughter’s agency agreed with our decision based on their knowledge of Ellen and what she will tolerate. Everything was well and my daughter was very happy after the trauma she went through for five months after her broken leg, two hospitals, and two different rehab facilities. She slowly adjusted to her old life once again and we were happy.

After a few months, it became apparent that we needed to visit the new neurologist for an evaluation that is mandated, and so my wife and I went. Meeting the new neurologist was a tension-filled meeting on the part of the neurologist. I guess he felt that we would be hostile to him, which we were not and so he made the statement that did rise the tension very high in the room. He said he needed to do tests to determine if she was susceptible to instant death because she is epileptic and her medication, Lithium, could cause death. This was coming from a doctor who did not know my daughter and had no idea how she behaves.

My daughter has been living with her situation all her life, 44 years and never showed us signs of epileptic fits and her seizures were all Petite-mals, not grand-mals. His request was funneled through the idea that if we didn’t do these things or tests to her, it would be on our conscience, in other words, she could drop dead!

 It is interesting how much my wife and I think about our daughter and what is best for her. We have spent countless days and hours at clinics, hospital and what not to help her fight off the agony of her condition. We know how frightened she gets when strangers force her to do things she does not want to do. All too many tests and analysis was only wasted time because of her uncooperative nature. I told the doctor that her past would lead anyone that testing her is never easy, or a complete test, often being aborted in mid-test because they were getting absolutely nothing. He looked at me like I needed help.

 The final suggestion was that if all else failed, they would operate on her brain!

 No damned way that happens unless they lock me up first. They will not experiment on my daughter for the sake of their records, let alone open her skull and perhaps ruined what little she does have. All this in a whim!

 My wife and I agree we would rather let her die by taking the chance that she won’t than subject her to frightening operation on her brain that may make her more dysfunctional than she is already.

 It is very hard to be a parent of a child who does not speak or interact even a little. We have always given her whatever she ant, and I have been on the vanguard of protecting her and advocating for her, as well as my wife has. We will leave her alone. If the time comes where we need to make that kind of decision, we will be there to deal with it.


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