Oh, the Unpalatable Food of Parents of Special Needs Children

I did not think I would have time to blog tonight/today, but it appears that I do since I am up "eating," following a phone call. The call came right in the middle of the night as I snoozed away here in Germany. Donnie, the husband. Well, Donnie would not have called me at this hour had there not been a dramatic need, and there was.

Doah, our mentally retarded youngest, had had an altercation with someone at work and had become violent (tried to bite). So, the staff, together with the owner of Doah's group home, was asking to increase his epilepsy medication. This is a considerable set-back since we had only two weeks ago convinced the doctor to begin weaning Doah from this medication based on the fact that he does not have epilepsy, has never had any kind of episode remotely similar to epilepsy, and does not have a violent nature. In fact, we were quite persistent about making the attempt to wean him from the medicine once we found out that the doctor had tried no alternatives to addictive medicine. Her reason: He is on MediCal insurance (state insurance for handicapped individuals in California -- no other insurance company will take him because he is a definite risk), which allows only 15 minutes a visit and a limited number of visits. So, she told us that all she has ever had time to do is measure the amount of medicine in his blood and re-prescribe and that is all she ever plans to do. (You have to admire the doctor's honesty.) If we want alternatives, they take time, and we would need to find another doctor. However, she could not recommend one because none that she knows is willing to work with MediCal patients because the payment is so low. Fortunately, she was willing, reluctantly, to try to lower the dosage of one of the addictive medicines Doah is taking.

I am not a doctor although sometimes I joke that given all our kids and grandkids with serious birth defects that I have earned an honorary medical degree. Well, obviously not so. I have no idea whether the fact that Doah has had this medicine in his system has caused some changes that show up in violent actions as a side-effect of withdrawal or whether Doah with age (now nearly 30) has become unable to handle some of his emotions. Whenever he is with us, he is happy-go-lucky, and the times that he has been frustrated, he has generally released a 20-second flash flood of expletives that dries up as soon as I look at him and say his name sternly or with disappointment, depending upon the circumstances.

Here is a new wrinkle, and from half a world away I have no way to analyze the situation accurately. Reluctantly, I agreed to have him return to full medication. Frustrated, I complained to God about it and heard this little voice say: "He is my child." Oh, yeah, that's right. I am not in this alone anymore, like I was when I was an atheist. I have a Helper, a Supporter who actually loves both Doah and me. I felt a comforting stroking which I don't know how to explain: sensation without sensation. But that reinforced my understanding that God will take care of this one way or another.

Now, though, I cannot go back to bed. I am ravenous. I rummaged around my emotional refrigerator and found what I am hungering for: a huge piece of humble pie. I will finish that, and then I can get some sleep. Tomorrow will be another day. Meanwhile, I don't have to worry about Doah. God is doing that.

What a Wondeful Day It Was!

Yesterday was the most amazing day. Seriously! No tongue-in-cheek intended here.

First thing in the morning, Lemony dropped Nathaniel at school and picked me up in her rental car. (Shane's and her car broke down while Nikolina was hospitalized at Stanford--transmission needs to be replaced.) I could not drive because our battery was not working; Donnie had had to call AAA from the hospital parking lot the day before when the car would not start, and the battery had to be ordered.

While I was waiting for her, I remembered the financial issue that had been hanging around for a few days, jumped online, and discovered a deus ex machina resolution to my financial problem. An amazing solution -- but I am getting so spoiled by God pulling my family out of the muck all the time that I was not even surprised. First, earlier in the week, in order to overcome the sizable deficit caused by my not canceling an automatic payment when I chose to send in a paper check through the mail (thus paying twice and unable to get the money back in any kind of timely fashion), I had made arrangements to use savings and max out the credit cards with advances. That earlier morning, however, when I got up and checked the bank balance before going to the bank for the advances, I found that all the rest of the automatic payments for the month had been sent in and cashed, bringing the negative balance to a level beyond my capacity to make up in the manner I had planned. (I have no idea how the earlier release date got on those checks. I must have made a typo on the automatic payment date for them, but that seems strange. Possible, but truly odd and unlikely.) So, I was left with an impossible situation. What a crazy answer to a prayer for help! But God knows best, so I figured that since I could not catch up the account, anyway, I would not even try, especially since the amount I was able to round up would bring the negative balance to exactly $-666, and I did not like that number. I would just wait and see what would happen. Well, what happened was a bit extraordinary. First, the bank paid everything. Not maxing out the credit cards turned out to be important because we needed to put the car battery on them, as well as some other things that came up associated with Shane's emergency and other unexpected "activities" of this week. (Had my plan to fix matters myself worked, we would really have been stranded.) Then, yesterday, I saw that on Wednesday some per diem I was owed had come in, but for twice (!) the amount I expected. I was then back in the black by a few cents, and of course everything was much better Thursday morning, which was pay day.

This is why I never worry or even think again about any problem after turning it over to God: because God fixes things so well! (Well, there was that one time that I did worry, and God made it very clear to me that I should not do that; I never have again, at least so far.) My experiences in this vein have, I suppose, turned me into a little kid, always expecting the parent to rush the rescue. Actually, I never ask to escape the bad. I don't even worry about bad things happening; they happen, and that is inescapable life, free will, bad genes, evil-doers, and all that. But I do expect to be rescued. I also know that something good will come from the bad stuff, and I am curious enough to want to see what it is. I do bring the bad stuff to God's attention because I think it never hurts to ask, but generally I only ask once because somehow I am pretty certain, given the complications of our lives, that God must have us on a weekly checklist: "clean up this week's Mahlou mess."

So, Thursday morning started out easy! Little did any of us know what was to come!

After being picked up, I watched Nikolina while Lemony went to visit Shane in the hospital. Shane's appendix, it turned out was not about to rupture as the doctors thought Tuesday evening. It had already ruptured several days earlier, but apparently the concern over Nikolina's spinal surgery and the trips back and forth from Stanford kept him ignoring the pain. Only after Nikolina was home did he realize that something was wrong. Very wrong, as it turns out. He was full of gangrene. The appendix has been removed and his insides scrubbed. He is on mega doses of antibiotics, to which he seems to be responding well. The doctor has maintained a partially open incision because with Shane having a fever that comes and goes, the doctor is not certain that he got all the infection out. So, we wait. Until Monday, we are told. At least, Shane is now allowed visitors (initially restricted), and both we and Lemony have visited although yesterday Lemony's visits were abbreviated and between my babysitting duties and Donnie's trying to get a battery for an older car and wire money to Blaine (whose car had also broken down) -- once again glad that we had not gone ahead and maxed out the credit cards, we were not able to visit at all. But all of that was but a hint of things to come.

Not long after leaving for the hospital, Lemony returned home with Nathaniel in tow. The school had called about ten minutes after she arrived in Shane's room to ask her to pick up Nathaniel who was being sent home with conjunctivitis. She had to take him to the pediatrician, who is in a city south of us by about 20 miles. Most of her afternoon was spent on that while I got to teach Nikolina pattycake and other baby games that her great-great grandmother taught me. (It's interesting to see how, as a grandmother, I instinctively mimic my grandmother, not my mother nor myself as a mother. Odd!)

Lemony returned just in time for me to give Nathaniel a hug, and then both of them went off to open house at school. Donnie showed up at Lemony's with a working car, and we were just beginning to relax from all the stress and trauma of the past week, beginning with Nikolina's surgery, when all the lights went out. A helicopter that was helping to put out a forest fire several miles away had flown into the power lines and knocked out the electricity and cell phone tower for three towns. Lemony came home, left Nathaniel with us, and went to the hospital to confer with Shane on next steps. Nikolina was not tolerating the 100+ degree weather without air conditioning, and not having a working phone in an emergency was a concern.

Shane and Lemony found a hotel for Lemony and the kids about 30 miles north that had electricity and air conditioning -- and space. Off we went in our two-car caravan. (We did not want Lemony driving alone without a working cell phone.)

What fun! After settling Nikolina and Lemony into the hotel (Nikolina immediately perked up), we picked up some snacks for the next morning for Lemony and kids, gas, and dinner at Denny's. (Once again, I was glad I had not maxed out those credit cards.) After dinner, Nathaniel and I had fun splitting a root beer float: I drank the root beer, he sipped the "fuzzy stuff," and we split the ice cream. Then he proudly carried Lemony's dinner that we had ordered for her as take-out back to her at the hotel. As I left, I turned to say goodnight to him, but he was fast asleep in the bed, shoes and all!

We arrived back home at midnight and went straight to bed but not before offering a prayer of gratitude for once again being spoiled. Fixed finances. Car that works. Shane out of danger. Nikolina home (well, hotel, but better than the hospital). A day spent with family, which is hard for me to get, given a job that has me traveling frequently. And important lessons taught (and, hopefully, learned), such as

(1) Family is more important than work;
(2) Family bonds are built through time spent together, even if it is shared trauma;
(3) People have physical limits -- we should keep those in mind and enjoy our family and friends every day, treating them as though we have limited time with them because we truly do;
(4) There is no problem that God cannot fix better than we can try to mend ourselves:
(5) God will come through for us, just perhaps not always at the time or place or in the manner we anticipate;
(6) Cars, modern conveniences, things -- none of these are more important than relationships with family, friends, God;
(7) It is important to stop and smell the roses -- had not all these things happened this week, I would have been at work from 8-8 and would not even have seen the roses, let alone stopped to smell them; it is important to remember that life is for the enjoying, the valuing, the gee-whizzing, and the thank-you-God'ing, not for burying ourselves so deeply into our work that miss out on the wonder of it all;
(8) It is okay not to be fully mature, to run to God whenever help is needed;
(9) We can trust God without reservations of any sort; we don't have to worry (we simply choose to); and
(10) God likes to spoil us.

Yesterday, Lemony asked me rehtorically, "When is this all going to stop?" Ah, she has missed the point. It may not stop. Life is what it is. It is not important that the bad stuff stop because God will fix it, God will use it to teach us important lessons, and in many cases God will use the bad for ultimate good, often widespread good for many people. In the end, if we let Him, God will spoil us.

God, for sure, spoils me and mine. But you don't see me complaining!! As Nathaniel recently said to me, "Grandma Beth, you spoil me, but that's okay because I love it." Likewise, I say, "God, you spoil me, but that's okay because I love it!