A Matter of Perspective

As Shane continues to cope with the reality of being unemployed, the issue of primary consideration has been to find a way in which to cover little Nikolina's continuing routine medical needs (routine for her, that is, and well beyond routine for a child with normal health), as well as additional, necessary surgeries. Knowing that Supplemental Security Income, which Noelle and Doah receive as disabled adults, will, under some conditions, provide a monthly stipend for children and, more important, health coverage, I suggested to Shane that he check into that possibility.

So, Shane did an online search of the SSI program and qualifications for it. Based on his research, he decided that Nikolina was not qualified. Why? Because to qualify one has to have a permanent, ongoing disability.

Hm, let's see. She has spina bifida. Not a permanent, ongoing disability? No colon or rectum. Not a permanent, ongoing disability? An ostomy and a reconstructed bladder that gives no indication of ultimate continence. Not a permanent, ongoing disability? Legs that had to be moved with no guarantee that she will be able to walk. Not a permanent, ongoing disability? OEIS Complex, from which only she and one other child (in Pennsylvania) are known by local doctors to have survived. And I could go on, but clearly Shane did not.

Yes, little Nikolina has reached or exceeded all her developmental milestones and appears every bit as bright as her older brother. She has an extraordinarily pleasant personality and does not cry even when her blood is drawn. We figure she is so used to be poked and probed she considers it normal. She can cry, but she uses her tears to control her parents and grandparents: leave the room, she cries; return to the room at the sound of her cries, and she immediately becomes all smiles and excited, wanting to play. Little manipulator! Nothing wrong with that brain.

I understand Shane's response, though. Once you have lived with a child with birth defects, you think not about the defect but about general health: colds, viruses, illneses. From that perspective, Nikolina is very healthy. All her medical visits are follow-ups to her surgeries or about planned surgeries. She has not been sick even one day. That, in Shane's book (and in mine), makes her a healthy baby.

Shane's response reminded me of an episode when Noelle was three years old. We were at the hospital, waiting for an EEG following a grand mal seizure that Noelle had experienced the week before in connection with an intermittent VP shunt malfunction. Paraplegic and in need of surgery prior to being able to be fit with long-leg braces, Noelle traveled everywhere in a stroller. The nurse rolled her away in the stroller after getting a positive answer from me to her question, "Except for this seizure is she otherwise healthy?"

As she rounded the corner, the image of Noelle being asked to get out of the stroller or to stand up, neither of which she could do, dropped into my head. Oops! There was a missing piece of information here! I zoomed off after the nurse.

"Excuse me," I called to her. "Do you consider spina bifida unhealthy?" Of course, she did! I didn't.

What can I say? Like mother, like son!

Lessons from Mom

Rather than write a post of my own today, since it is, after all, my birthday, I thought I would share Lizzie's post on Face Book, accompanied by a picture of Lizzie and me that Donnie took oh so many years ago. Lizzie called her post "Lessons from Mom." It raised quite a stir among her friends. It is always interesting to learn what one's children think of you -- and since Lizzie is now a professor of neuroscience and psychology, she has a more evaluative view than most children. So, here it is: Lizzie on Beth! (Realizing that some comments may require further explication, I have added clarifications in brackets -- if more clarification is needed, just ask!)

Lessons from Mom:
1. Life is an adventure, something to be enjoyed.
2. Challenge yourself – always.
3. Tolerance, acceptance, and love for all human beings.
4. Be willing to take risks .
5. Hard work can change your life’s circumstances.
6. Don’t be ashamed of yourself, your mistakes, or your past, just fix what you can and move on.
7. Humor can be found in the most insane and frustrating situations.
8. When life throws you punches, duck, hit ‘em where it hurts, and then face ‘em square in the eye for round 2.
9. Everybody has something to teach you---you just need to be open to their story.
10. To love is to forgive. To forgive is to be open to love.
11. Stand up for what’s right.
12. Do what you love, be the best at it, and the money will work itself out.
13. Education is a priority—even more important than a clean house and pretty clothes!
14. Laugh at yourself---frequently.
15. If it’s important to you, give it all you have.
16. Be yourself and people will love and respect you.
17. Honesty is not just the best policy, it is the ONLY policy.
18. Protect the ones you love.
19. Money doesn’t matter as much as character.
20. When dealing with conflict—the only way is the direct way.
21. Surprisingly, understanding British English is much more difficult than learning Russian. [Lizzie accompanied me to the UK at one point -- and I had a lot of difficulty understanding those folks whereas she spent a year in Russia with me, and I had no trouble understanding those folks.]
22. Make sure that you walk out the door fully dressed—every morning. [Once, in a hurry and rushed from getting four kids ready for school, I ended up at the bus stop on a major highway in only my slip.]
23. Hummingbird food may look like kool-aid, but it tastes oddly different. [My abysmal and risky cooking frequently panicked my children.]
24. Choose the road less traveled—it’s much more interesting and scenic. Just make sure the road is headed to the correct state! [Once, in traveling from Chicago to Pittsburgh, I took a very wrong, northern turn and did not realize what had happened, until I ended up in Detroit!]
25. When in doubt, drive 40 mph—EVERYWHERE!!! This way you have an equal chance of pissing off people on the highway and in the school zones.
26. When flying to England, pack your passport, even though they do speak English there. [I once forgot my passport for England; I told the ticket agent at the airport that I did not consider England "foreign" because people speak English there -- that was before I found out that it was not exactly my English that they speak there.]
27. Children should probably not be taken to porno flicks. The difference between a porno flick and a Disney flick can be easily identified by the tag line, “it wasn’t only his nose that grew.” [And she remembered this! Donnie and I looked all over a Disney movie for Lizzie and a weekend house guest from her kindergarten class. We found that Pinocchio was playing at a theater we had never been to before. We understood why we had never been there when we saw the XXX on the top of the theater and saw the tag line.]
28. Don’t let anything slow you down---for example, when midst deep conversation with a colleague and your shoe gets caught in a grate, causing you to walk out of said shoe, keep walking and talking. Your daughter will surely notice and run back and fetch it for you! [Yes, it happened!]

Dear Mom,
As you can see you have taught me so much -— some important and some fun lessons. I knew I was in trouble when, at the age of 5, I asked you when we were going to have a “real” life and you responded, “what do you mean?” I was like, “what DO I mean? How do I explain to this kooky lady that we are just not normal!” I then spent the rest of my childhood explaining to you how you were not doing things right. Yay me! I thought I was being helpful. Only now I realize how annoying it must have been to have a little chatterbox mouthing off all the time. Fortunately for me, you fostered my independence and need to voice my opinion. Thank you for not only loving me and supporting me through all those times and all my crazy and “not-so-normal” choices in life, but also being proud of me for who I am. I am so glad that I have the opportunity to get to know you as a person and share our life experiences as adults. Have I stopped telling how you are doing things wrong, yet!? That’s a hard habit to break. But, as much as my 20-something self planned on heading toward a rule-laden, normal, safe life, I find myself embracing the forget-conformity life that you modeled for me. Thanks for showing me the way towards a happy and fulfilling life. I love you, Mom.

----

And, for old time's sake, here is another picture of Lizzie and me (with Noelle enroute), taken by Donnie, many years ago:

Er-Er

The mini-bio series of the members of the Mahlou clan would be incomplete without the introduction of Er-Er, who was in our life for all too short a period. However, to understand how we ended up with a rooster as a son, one must understand a little more about San Ignatio than I have shared to date. Besides being a small, quiet, mission town, reminiscent of old Mexico, with wooden buildings and no modernity, even in its limited shopping establishment, San Ignatio has been a time-immemorial home to a collection of feral (would that make them free range?) Mexican chickens.

City law gives chickens the right of way on San Ignatio streets, which is not a problem since the streets are narrow and top speed might reach 25 miles an hour. Speeds in excess of that are also violations of city ordinance.

Every spring one finds mother hens with their broods strutting up and down the sidewalks, toddling across streets with braked cars, and ambling into the yards of residents. We enjoy them, and we have had several broods of feral chickens raised by their mothers in our yard. We feed them and get to know them, becoming involved in their lives. Although chickens are reputed to have limited brain power, we knew that they know us the time we walked home from one of the local restaurants to find the roosters from a recently grown brood nestled in a tree not far from our house. (Ah! Is that why they are called roosters? Because they like to “roost” in trees and elsewhere?) As we walked past the tree, they all started crowing and showing excitement. Either we were being greeted, or they hoped that we had some food on us. In any event, we were clearly recognized as a food source!

Another time, I became involved in a mother hen’s dilemma. As her chicks were feeding in our yard, a stray dog grabbed one that was close to the sidewalk. Immediately, all the other chicks scattered, and Mama Hen flew up into a tree, squawking. The noise brought me outside, and I quickly determined the problem. Before the dog could leave the area with Little Chickie, I ran over, pried his mouth open, and removed the chick, who seemed undamaged. (I think the dog just wanted to play with him, not eat him.) Mama Hen clucked all her children back to her, and I brought over Little Chickie. She seemed grateful to have him back if chickens feel gratitude. I watched Little Chickie over the next few days, and he appeared to have experienced no lasting negative effects from having spent a few minutes in a dog’s mouth.

Er-Er came a brood later, from a different mother hen, who abandoned him as a young rooster. Either she felt he was grown up enough, or the brood kicked him out. We don’t really know. Mother and the nearly grown chicks, who had been eating in our yard, simply disappeared one day, and there was Er-Er, all alone, sleeping in our tree. Perhaps he just did not go along with the crowd by his own desire. I can understand that! Perhaps he knew where the food was and chose to remain near it. In any event, one fine morning, there was just Donnie, I, and Er-Er.

Er-er's name came from our discovery that he was not a female chick but a rooster in the making. I had never realized that roosters go through an adolescent period in which they learn to crow, with some unsuccessful attempts in the beginning. "Er," he would start, then go on to "er-er, er, er-er-er." His most common mis-attempt until he reached full roosterhood was "er-er." Hence, the name.

I learned to communicate with Er-er in rudimentary ways. He would come when called. He allowed me to walk right up to him with food, and he followed me around at times like a puppy. Once he reached roosterhood, he began to range farther from our house, but he always ended up at home for food and to sleep in our tree. Some morning I would leave before he had returned from his early morning saunter around town, and I would catch him on the next street. "Er-er," I would call to him, "go home; it's time for breakfast." He would make a beeline toward home, and, as he rounded the corner, I would call Donnie and tell him to be ready with food because Er-er was on the way.

Er-er found himself two wives. He strutted home with them one day, and we were so proud of him. After that, he stayed around the house more, but eventually another, older rooster lured his wives away. Poor Er-er! He took it in stride, however, and continued his occasional jaunts into the rest of the town, returning home for eating and nesting for months.

Some months later, a new mother hen with a new brood moved in. Surprisingly, she and her brood accepted Er-er, and they all dined together on a daily basis each morning. Afternoons, they all lay in the shade of the tree together, and when the sun was less bright, they all scratched in the dirt for bugs. That brood, too, grew up and moved up, but Er-er remained, open to a parallel-activity friendship with any of the other townies (hens and roosters) who happened to stop by to root for bugs or scarf up some chicken feed.

Then one black day, chicken catchers showed up. We were unaware that the town hired chicken catchers with big nets to weed out excess fowl so that they town did not get completely overrun. There were a number of visiting fowl in our yard that afternoon. Only Donnie was home, and he heard the racket as the frightened fowl flew in all directions. He went out to the yard and found the chicken catchers dashing energetically after the scattering fowl. Donnie asked them to leave, and they complied, noting that they had already caught a few, anyway, and that should be enough. After they left, Donnie looked around at the remaining chickens. Er-er was missing. He never showed up again, and our assumption is that the people-trusting chicken was likely the first caught and carted off, as he was very likely to walk right up to the chicken catchers, expecting food or company. We were heartbroken.

For many days I prayed that wherever Er-er ended up, the people into whose hands he fell ate him and did not force our gentle, people-loving creature into cock fighting. (That is a problem here in California.)

It took me a long time to reconcile myself to the loss of Er-Er. I still miss him, and I still pray for his well-being just in case he has remained alive though one might consider it odd to pray for a rooster.

Welcome Home?

I arrived home at 4:00 this morning, and within minutes I learned of two pending, not-the-most-pleasant events, neither of which was totally unexpected, yet neither was fully expected, either.

This morning Lizzie informed me that she and Blaine have decided to divorce. She said that they were much better friends and siblings than spouses. At least, that made sense and was not the shock we received when seven years ago they decided to get married. Raised as siblings but with no blood relationship, they grew very close and thought that the love they had for each other was something beyond that of two very close siblings. Now, they have decided otherwise. As we told Blaine, "seven years ago, you were a son who became a son-in-law; now you are a son-in-law about to become a son again." Life sure takes some strange turns, but we all believe that this is the right thing for Blaine and Lizzie. God willing, they will find marital happiness in the future with the right person for each of them.

Then, this afternoon, Noelle informed me that she had experienced a rather odd thing yesterday. She was supposed to be admitted to the hospital yesterday for foot surgery. The doctors are still trying alternatives to amputation to handle her rather serious bone infection that she has been trying to overcome for a couple of months now. The hospital called her with the date of admission. (I had not known about this because she is not on email and could not inform me while I was in Lithuania although Donnie should although he was quite busy yesterday helping Shane with his unemployment needs and interim insurance until COBRA is approved -- it turns out that nearly any option will insure Nathaniel and the parents but will exclude Nikolina, who is the one who most needs it.) However, when Noelle showed up yesterday to the Admissions office, no one had her listed anywhere. She said she thought she had been living in Salts, not in the Twilight Zone, but now she is not so sure. At any rate, she has an appointment with the doctor tomorrow, so hopefully there will be some clarification. For the moment, she seems to be in no danger.

Well, at least, the cats had no problems, had not changed, and were happy to see me. Murjan has not left my side during the entire evening. And I did have a wonderful interlude: I was able to get some time off from work to attend noon Mass. It's the quiet interludes that make the noisy overtures manageable.

When I came out of the chapel, the sun was shining gloriously. It is good to be home, regardless of the complications that often surround us.

Ah, well, these situations will work themselves out positively somehow sometime. Waiting is what is needed. I certainly get a lot of lessons about waiting (and am still not very good at it).