Thursday, January 14, 2010

Clan under Siege

As we prepare to remove Ray from life support tomorrow evening and I prepare to leave for Lithuania on annual leave to help out a friend who is in desperate need for a professor of linguistics to teach a senior year required course, the need to balance the competing requirements of funeral, trip, and emotional support for Noelle seemed to be challenging enough. Apparently, not so.

Yesterday I learned that we have a very senior official from the US government coming tomorrow afternoon, right before our trip to the hospital, and I am the one who has to brief him on our planned new projects about which I have blogged in the past. That should create a sense of nervousness -- my boss is certainly nervous -- but with everything else going on, it is just going to be another hour of my life that comes -- and goes.

More important and overshadowing even Roy's pending death is the news that Shane received this morning. He was handed his paycheck with a note to see the chief of police (his supervisor's supervisor). The chief of police told him that today was his last day. He would not give any reason. Shane puzzled over any possible explanation. His performance, if unsatisfactory, should have showed up as an issue before this, but he was given a pay raise for his excellent performance. If the organization had a budget crunch, others should be aware of it and other jobs should also be on the cutting block. Neither is the case. No one else was fired, and there has been no talk about budget crunch. We are pretty certain the reason is because Shane has missed so much work from having to be with Nikolina during her surgeries, followed by his own appendix surgery. A couple of months ago, the Human Resource office made an inquiry into the amount of leave he had used. (He was entitled to the leave, never going into a negative leave status, but he did miss a total of three months because of the medical emergencies.)

I remember these kinds of issues and challenges raising seven kids, three of whom were physically disabled. Balancing work and home often left me nervous that a particular supervisor would not understand the need for me to be with one child or another during a medical crisis, especially when we were experiencing wave upon wave of medical crisis during the 1980s. Fortunately, most of my supervisors were very understanding. Still, many times I feared for my job, and other times I observed other parents released from work for "lack of availability" because of the need to take care of handicapped children. These are some of the many of the hidden challenges in raising children with birth defects.

Contrary to our hopes for him, Shane is following us down the thorny path of trying to provide for Nikolina and Nathaniel in a society that is not highly supportive of children with special needs, let alone of their parents. Many parents I met over the years dropped out of society and survived on welfare simply in order to have adequate medical care for their children. We did not do that. We did without the luxuries of life, as well as many necessities, in order to provide adequate medicine and education for our children. Anything beyond that was a "want" and not a "need," and we gave up many of our "wants."

Shane is getting ready to do that. Since Lemony has been full-time occupied in taking care of Nikolina and Nathaniel, the family is now without an income. More frightening is that our million-dollar baby (Nikolina) may be without health insurance coverage -- and that is just not an option. Shane has some ideas for short-term financial survival, is looking into the cobra option for continuing his current health insurance (which, unfortunately, may cost more per month than his monthly unemployment check), and he has already put out feelers for employment opportunities. (Creative survival ideas from readers are also welcome!)

Well, besieged again, the Mahlou clan will gather its forces and outlive the siege, I am certain. God is always good to us, and Shane has an excellent attitude. "Just think," he told me, "this might be a door to a new position that is better than what my current job has been."

Yes, Shane, I think it will be! God has a way of turning bad into good. Who knows what exciting plans He may have in store? We just have to help Him help us by helping ourselves and each other -- and then hang on for the ride because God's rides are usually WILD!


  1. Dearest One, Shane's statement at the end of the next to last paragraph reflected what a wonderful job you have done in being his Mother. There are not many young men who I know that would think in such terms. Truly, God does not close a door without opening a window. My son was a police officer in a small neighboring town, and he had lobbied for the job intensely. He was there about a month and due to a particular Lt. who just, for unknown reasons, had a beef with Kerry, Kerry ended up losing the job.

    In the end, and due to circumstances that became known to me afterward, God was indeed, working to steer Kerry away from some possible danger. He realized that after we talked about it and he is happy with closing that chapter.

    I am so deeply sorry about Roy and I pray for the repose of his soul and for comfort for Noelle. I do not know how I would have been able to make that decision for my loved one either. God took that from her, thanks be to Him.

    I'm trying to catch up on my reading of blogs. I have been otherwise occupied by the birth of Kerry's first child, a boy name Cooper. He is delightful and my world continues to spin.

    You are all in my thoughts and prayers. I hope you will be blogging from Lithuania???

    Wishing you many blessings, much joy and peace of heart.


  2. Thanks, Abbey. And thanks for sharing the story about Kerry. Shane is managing, and because he has a good reputation, he has folks contacting him about possible jobs. Stanford University may be able to help with COBRA, including helping to pay the premiums -- seems that they have some kind of program for that. Who would have thought? I suggested SSI, but Shane told me that the child has to be disabled. Hello?! Nikolina has spina bifida along with what we call humpty-dumpty syndrome (the doctors had to put the pieces back together) but doctors call OEIS. It's pretty healthy, I think, that Shane does not think of Neela has handicapped. That should help her develop more rapidly.

    Thanks for the prayers. If I ever get to Lithuania, I should be able to blog from there in spite of a full teaching schedule (a semester in a two weeks -- yikes!). I am currently stuck at the San Francisco airport, not flying for another hour, and it will now take me until Friday evening to reach Klaipeda. Well, better late than never!

    Congratulations on the new baby, Grandma!

  3. It is always a worry for me, as the grandmother of a special needs child, that the time his parents must take from work and the expense to the employers insurance might cost his parents their jobs. Medical is a back-up for Michael and that is a relief, but his parents have no such back-up.
    Our son lost his job a year ago but is now again employed. I wondered at the time he lost his job, was Michael a factor?

  4. I think it is a very legitimate worry -- and very well may have been the reason behind the loss of your son's job. My sister works in the medical field and has seen it happen from time to time. It was something I frequently worried about when I was raising my special needs kids. Fortunately, my husband and I were able to take turns with the emergencies, so it cut in half the time either of us missed from work. On the other hand, it also meant that we were always dealing with emergencies one on one, especially since it was before the day of cell phones. Nonetheless, we did not dare allow ourselves the luxury of both being present for an emergency unless it was on the weekend. We also, to the extent possible, worked our schedules so that one of was available days and the other evenings (not always possible, but where we could do that, we did it). People (even doctors and nurses) without special needs kids don't realize all the peripheral worries and stress that occur.


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