Sunday, December 21, 2008

Getting Through It

For all of you who read our last post and have been praying for us, a hearty thank-you is in order. We humbly ask that you keep it coming; we suspect we're going to need it in the coming weeks and months.

It was about an hour or so after we got back from the ultrasound appointment on Friday that we got the call from the genetic counselor, telling us that they had detected the various abnormalities in our baby.

I thought I'd fill everyone in on how we've been doing since then.

Upon getting news like this, that the baby we're expecting is going to have deformities of some as-yet-unknown severity, the first tendency is to imagine all the terrible things that could happen. This tendency is exacerbated by our natural desires to look up any information we can, so we can see what we're dealing with. And if one googles "Single lateral ventricle" and starts looking around, one very quickly starts coming across the worst-case scenarios, which I'll not get into here.

So Friday was a bad day. We were rather numbed by the news. But we still had to function: one's own kids don't stop getting hungry just because one's in a funk over whatever-it-is that grownups worry about. So we told the two girls (the boy being too young to understand) that there is something wrong with the baby growing inside Mommy, and we don't know what's going to happen. And we called up the church, and both sets of grandparents, and a few others with an immediate need to know (like our wonderful sister-in-law, who agreed to look after the kids tomorrow while Tonya and I go in for more tests). But on the whole, we were still borrowing trouble from tomorrow--a whole lot of it--in direct contradiction to what Jesus told us to do.

Well, now it's two days later. The news has had a little time to sink in. And with that time and some reflection, things don't seem so bleak.

For one thing, I've noticed that I have shortened my time horizon, so to speak: I've been thinking a lot about what Jesus said, about not borrowing trouble from tomorrow, and trying to live it. And in fact this is what nearly every person I've known who's lived through a serious personal crisis has said: "I take it one day at a time." Right now, I don't have to worry about what will happen in May: I only have to worry about what's going to happen today. What do I have to do today to get me, and my family, through the day?

And for right now, the answer is, pretty much what I've already been doing.

Great! Problem fixed, for now. Of course, when May runs around, things are going to get more complicated. It's likely Tonya and I will have some tough decisions to make then as well. And we don't even know what May's problems will be yet! And yet, the way to approach May will be the same: What do I have to do today, to get me, and my family, through the day?

Now, I'm aware that this may sound awfully sanguine, now. Maybe it is. Maybe all this sounds, to someone who's actually experienced tragedy first-hand, like I'm completely unprepared for what's about to hit. And that may in fact be the case. Nevertheless, Tonya and I have, in the last two days, come to a point where we can function, where we can keep our family going, and that counts for something.

Especially given that it's Christmastime. For those families whose babies are not well, this can be an especially difficult time of year. Everyone is supposed to be so happy! And there are so many things to do! For those who are hurting, the desire is that the rest of the world would just shut up and go away. And it doesn't help that what is being celebrated this time of year is the birth of the perfect little baby. When the baby one carries is known to be carrying some kind of deformity, it can be heartrending to hear songs like,
Away in a manger, no crib for a bed,
The little Lord Jesus lay down his sweet head....
Nevertheless--it's still helpful to have our other kids around, because they keep pulling us back into the present, where we belong. We went tonight to see a play my Church is hosting about the birth of Jesus, and my girls were particularly taken by the scene where the angel appeared to all the shepherds (who were played by several elementary-age kids). When the angel appeared, they all jumped in fright and hid. Our girls, upon getting home, started acting this out: one would jump out and say "Shalom!" and the other would scream, "AAAAAAAAAHHH!!" and start running around in terror. And then the angel would start running around after the shepherd, which only made the shepherd more afraid...

And Tonya is sitting here laughing just remembering the scene. It's pretty funny--especially when the shepherd was played by our six-year-old girl, and the angel was played by our hyperactive four-year-old.

And the humor has been helping too. We keep doing little things that break the tension. Even when we're practically trying to make ourselves mope about, we do little things that bring us back to the present. Tonya delivered another of her magnificent mixed metaphors the other morning, complaining about our lot in life being a "bowl of tears." I looked at her with a cocked eyebrow and repeated, "Bowl of tears?" And about the point that Tonya started giggling at herself, I couldn't resist the obvious conclusion: "Too bad it's not a vale of cherries, either." The resulting laughter by both of us was much needed.

Anyway, we've settled into something of an equilibrium, for the moment. We still worry ourselves when we think too hard about the future. And neither of us has any idea what tomorrow's trip to the perinatologist will bring. But on the other hand, we've both started to accept the fact that the worrying doesn't change a thing--it just makes us miserable. We already know what we need to do to get through life, at least in principle. So we've settled into a mood that--depending on your viewpoint--is either wise acceptance, or fatailism...

...possibly mixed with a little defiance. What, you say? We might have a special needs kid? It might wind up really, really expensive? We might have some tragedy in our lives in the near future?

There's a part of me that wants to say (in my most annoying teen-age impression I can manage): What-EV-uh.

There's something liberating in looking at fate, and being able to quote Khan from that Star Trek movie (who in turn was quoting Capt. Ahab from Moby Dick, but Khan said it better): "To the last, I will grapple with thee... from Hell's heart, I stab at thee! For hate's sake, I spit my last breath at thee!"

There. I feel much better.

Anyway, continue to pray for us.

P.S. In the spirit of grappling with fate from the last, and stabbing at it from Hell's heart, don't be surprised if I start blogging about mundane things again in the not-too-distant future. Remember, if you don't go on about your normal business, then the terrorists will have won....


Rose said...

You all have certainly been in my prayers. We are going to have some additional testing in January (for our baby due in April) as there are some indications that she has Down Syndrome. You are absolutely right--you just have to roll with it and keep doing all the things you gotta do to keep the other children going and the family functioning. For us, it helps that we kind of have a vague idea of what the diagnosis of DS would mean, but then again, you never really know until you live it. And, yes, you can scare yourself silly by reading posts on the 'net.
I am praying Jeremiah 29:11 for you.

Chris said...

Tim et al,

I'm just now catching up on my blogger-buddies and read your last two posts. Know that you're in all our prayers.


Griz said...

My prayers are with you Tim. I'm sorry for all that is going on. I don't know what to say except that I will have other pray for you as well. Peace my brother! ~ Griz

Arby said...

It is safe to say that next time The Boss tells me that there’s an open position for deployed analysts, and she asks if I mind if she goes, my answer will not be a casual, “Yeah, I don’t mind.” She left on July 18th for a five month deployment to Baghdad. Yes, that Baghdad. The one in Iraq. There is an even better chance that the next time The Boss asks me if we can hatch some chicken eggs right before she deploys for half a year, my reply will not be, “Let me build you a coop.” She painted the coop “Va-va-voom,” and the paint color’s name accurately described its appearance. We had a chicken bordello in our backyard. I repainted the Best Little Chicken House in Kansas with “Barn Red” paint so that our neighbors wouldn’t be concerned about any fowl activity in the area. These were just two of the events that highlighted one of the most unusual years that I have had since The Boss enticed me to join her in Kansas City 14 years ago when she said, “Come with me and I promise you an adventure.”

In May, we took Captain Chaos to Children’s Mercy Hospital for an evaluation with Laura, the Occupational Therapist who helped Captain Chaos learn to eat real food a few years ago. Laura suggested immobilization therapy for Captain Chaos. We agreed to the procedure, and Captain Chaos spent the month of May with a purple cast on her right arm. Casting Captain Chaos was enormously beneficial. It forced her to learn to use her left hand more effectively. The down side to casting Captain Chaos was that we installed a club on the hand of a girl who held absolutely no inhibitions about slapping around her brothers whenever it suited her mood. It was The Boss who took the worst shot. If life had comic book sound effects like in an Adam West Batman fight, our bedroom would have filled with a bright blue “THONK!” after Captain Chaos, who was bouncing on our bed next to The Boss, jumped in the air, landed on her fanny, and clocked her mother in the forehead with her cast. It sounded like a baseball hitting a wooden bat.

“That’s gonna leave a mark!” I laughingly observed.

“I’m going to tell people that you beat me,” The Boss replied.

Major Havoc ran into the room after hearing The Boss yelp. “Are you okay, mommy?” he asked.

“I’m fine, honey,” she replied. “I just got hit with Captain Chaos’s purple glove.” “Purple Glove” was Major Havoc’s name for the cast.

“Oh, yeah,” he giggled, with genuine understanding. “That hurts!”

May was also the month when we incubated chicken eggs. The kids loved watching the birds hatching and holding the chicks. Just my luck, 3 of the 4 chickens turned out to be roosters, and by the end of the summer, long after The Boss departed for the Middle East, my mornings began at 0530 when they awoke and started crowing. Tending to three roosters and one very nervous hen was not what I had in mind when I agreed to keep the birds. I gave away two roosters and traded the third for two hens. We now have three hens (one Americauna and two Rhode Island Reds) that keep our yard bug free, the lawn well fertilized, and provide a steady supply of brown and blue organic eggs. The kids love chasing, catching, and holding the chickens. It’s great exercise!

One item that The Boss checked off of her pre-deployment “To Do” list, right before “Pass a kidney stone two nights before departure,” was to complete her oral boards for her Masters degree before leaving the country. Actually, she would have run for the border without giving her degree a second thought if not for one her professors, who asked her, “When are you going to get this finished?” Unable to think of a quick excuse, she scheduled her orals for late June, and spent one month cramming six year’s worth of studies into her noggin’. Her efforts we rewarded when she successfully completed her boards. The Boss earned an MS in Operations Research from the Kansas State University School of Engineering. Don’t bother asking. None of us really know what that means, either.

The children have tolerated their mother’s absence quite well. General Mayhem still studies Karate on Monday nights. He is currently a red belt, and tests for advancement this month. He enjoys Boy Scouts on Tuesday nights. In his first year of scouting, he has participated in many camp-outs, earned his Tenderfoot badge, and five merit badges. He enjoys the volunteer activities that involve physical labor more than he enjoys the meetings. He is in the sixth grade and in his fifth year of homeschooling. On Wednesday nights he attends Confirmation class at our church.

Major Havoc joined our homeschool this year as a kindergartener. He also started Tiger Scouts last September. I cannot tell whether or not he really understands what he is doing in Tiger Scouts, but he gets to wear a cool uniform and hang out with kids and play. Every once in a while someone gives him a patch for his shirt that he has absolutely no idea why he is getting. Tiger Scouts lets him be cool like his big brother. Major Havoc, who is going to rival his mother in the freckles department, has a huge smile, bright eyes, an infectious giggle, and a thirst for chasing down and catching chickens. Every day we watch the birds race across the yard, followed closely by a maniacally cackling Major Havoc. One of his biggest thrills comes each day when he finds an egg in the coop and can bring it into the house and place it in the refrigerator. He’s a fun kid.

Captain Chaos starts each day by exiting her bed shortly before dawn, climbing into my bed, and balancing her milk cup on my head. I awake to the sounds of, “Milk, daddy. Daddy, milk? Milk please, daddy.” The arrival of a full cup of milk does not guarantee that I will be allowed to sleep longer, as the chatterbox is usually just getting warmed up. All the important things that a four-year-old has to say are spoken before 6 a.m., well before my first cup of coffee, during that period of time when only the unconditional love of a father for his daughter assures her continued survival. Captain Chaos does attend preschool four days each week where she receives her Speech and Occupational Therapy. The speech therapist recently sent me a note telling me that they were working on two word phrases. I need to let Captain Chaos sleep at her house for a week.

Our family will be reunited when The Boss returns home in mid-December, just in time to celebrate Christmas. While you celebrate Christmas, please keep in your prayers all the servicemen and women, and civilians, who will spend their holidays overseas, and their families back at home. May God’s blessings be visited upon you during the Christmas season and throughout 2009.

Anonymous said...

"Trust in the Lord with all your heart; lean not on your own understanding.
In all your ways acknowledge Him, and He will make your paths straight."

We are praying for you guys too.

-your little brother, who knows all too well what you are going through.

Roger Z said...

Tim- I have found myself more and more in life taking just one day at a time. I find myself much happier the more I can do so, and more worried when I start thinking too far into the future. It's very enlightening to find happiness by learning not to "oversteer," so to speak.

You wrote- "And it doesn't help that what is being celebrated this time of year is the birth of the perfect little baby."

Not to stomp on your metaphor Tim, but here is Joseph, who found out his betrothed had just been impregnated by "God," of all People (think for a second what Josephy must have thought when Mary told him that); who now was seen by his own friends most likely as marrying the town whore to protect her namesake and ruining his own in the process, for who knows why; who has to haul his eight month pregnant wife across a desert to pay a tax bill, basically for a king who will soon be trying to kill the child he's protecting that's not even his (and forcing him and his family to flee to a land they've never known seeking comfort from strangers and in a wilderness of fear); and then helps birth a child that's not his, for a justification he can't explain and can't understand, in a dump where goodness only knows how many infectious diseases could kill the newborn or his wife anytime in the next 48 hours.

It only seems Perfect because we know the ending, Tim. In some ways, I think there is much solace for you and Tonya from our Lord. We're all hoping to rejoice with you in your own small perfect story five months from now, hang in there!!!