He wanted me to share this song: When I Get Where I’m Goin’

If you’ve ever lost someone you loved, do yourself a favor and watch it.

We are now supplementing with regular milkshakes. I bought ScandiShakes, which are a 600-calorie base for a milkshake. I use one packet and blend it with any number of items to try to make something that he will drink, and I’ve gotten pretty creative to keep him from getting burned out on any one flavor. Here are some ideas:

One ScandiShake packet, either chocolate, strawberry or vanilla.

8oz of whole milk, sometimes I add cream too.

Plus any of the following:

Raspberry jam with real fruit, frozen strawberries, frozen blueberries, frozen peaches, frozen banana, orange juice concentrate, cranberry juice concentrate, lemonade concentrate, ice cream of various flavors, raspberry syrup, chocolate syrup, peanut butter, anything you can think of.

“I just… I just….” he wept, his gray head hanging. Occasionally he looked up and out the window to the bright inviting day outside. The tall summer grass was laying over in the breeze, the flowers on the porch alternately dimmed and illuminated by the patchy clouds moving swiftly in and out of the path of the sun’s rays.

With effort, he pulled his shoulders up to draw a ragged breath. “I just feel so restless, to be outside,” he said, pausing to pull in more air between phrases. “I hate sitting here, lying here, dying.”

For a man who arguably spent two-thirds of his life, and certainly his best hours, out of doors, the greatest theft ALS has wrought to date is that of his freedom to be working outside on our farm. So much of his day is now spent resting in bed, or forever anticipating a bowel movement, or waiting for my availability to convey him to the porch to enjoy what nature he can from the porch.

And I, as always, am torn. I hug my dad tight, kissing the protruding vertebrae at the top of his bony back, but I hear angry squeals from the other end of the house, and the thunder of several pairs of preschool feet tearing toward me for justice. Sure enough, the door to my dad’s room bursts open and their pleas and accusations pour forth as they pile through the door. I order them out, and my dad pats my leg and gestures after them, releasing me to tend to their needs. I give him a lingering look as I head for the door. His face is still wet. I want to stay and give in to the sorrow, to walk with him through this loss. But my four kids, his grandchildren, call me away. So I return to them, to living and growing and learning and squabbling and playing, while my dad curls up on his bed again, staring out the window.

The daily soundtrack to my much-interrupted inner monologue is this praise and worship song, whose words remind that life and death are both in God’s palm.

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

“And so then I got a call from him saying we don’t have to worry about money no more and I said, ‘That’s good. One less thing.’” –Forrest Gump, upon learning he was wealthy

Sometimes money seems like such a stupid thing to pray for. Money doesn’t fix broken relationships (like mine with my mom) or heal awful terminal diseases (like ALS) or make any of us truly happy. But it sure can simplify the logistics of difficult circumstances, by paying for lots of expensive equipment to make living with ALS easier, for instance. As long as your hope isn’t in money and your motives are pure, well, I can’t say I have a problem with praying for money.

Especially when that prayer is answered so succintly, so beautifully, and so wonderfully like it was today. Dad’s long-term disability income was approved.

Woo-hoo and praise God!!

Thus far the hardest part about moving in with my Dad has been the necessity of changing our family’s direction to include him. This may seem obvious, and it is, but it’s the little ways the decision plays out that can be hard. When we decided this, even before he was diagnosed, I knew that almost nothing was dearer to me than keeping my dad out of a hospice and with his family. He’s only 59 years old, freshly divorced, just lost a brother to suicide and has depressive tendencies. Then he was diagnosed with a terminal wasting disease. Any other option than moving him in with us was barely worth consideration. No way was I going to give over his eventual care and assistance to strangers paid to care for him physically but not spiritually.

Some of the requirements of this decision were obvious. We’d have to move to a bigger home, buy a wheelchair-accessible van, help him take care of insurance struggles and get his affairs in order, learn how to use various types of equipment and manage home nursing staff, and eventually incorporate his needs into every facet of our lives when he is fully physically dependent. We also want to fully include him as an integral member of our family, so that he is not facing this alone. Gotcha. No problem. Consider it done.

Some of the effects of this decision were more subtle. E and I are very “pro-kid” as I like to say, in that we want to parent lots of children. We were foster parents and hope to do that again. We adopted and hope to do that again. We birthed a child and hope to do that again. This is a very ingrained part of who we are. But because my dad’s disease has such a bleak and short prognosis, we have made the very difficult decision to declare something of a moratorium on adding kids to the family for the time being. It’s unofficial, as we practice FAM and no contraceptive is 100% effective (although I’m a huge fan of FAM, personally), and if we were to become pregnant we’d be incredibly thrilled. But when we look ahead to the level of care Dad is going to need, we recognize that it would be exponentially harder to care for him well with an infant and toddler in tow. Right now, the kids are almost 2, 3 and 4. They can follow directions, obey, go to the bathroom themselves and feed themselves with little assistance. (Well, most of the time.) This is a good trend, them physically needing me less as Dad physically needs me more. To continue adding children with abandon is to increase the physical demands on me, which I’m fully willing to do …except to the point that it decreases the quality of care I’m able to give my Dad.

Does that make sense? I’m back to the question we had when Dad was first diagnosed in the middle of our plans to adopt. Is it wisdom to recognize that we are young and can probably have more children later, and to put off doing so to better care for my father? Or is it denying God (not getting into the theological free will discussion) the chance to work more deeply in our lives through extra-challenging circumstances, knowing that suffering produces character (Rom 5:3-4 and Jas 1:2-4)? I mean, if you look at it that way, we’d all be seeking out suffering in order to refine our character, and I don’t know anyone that does that, not even Paul. He didn’t always shy away from the possibility of suffering for his actions, but he didn’t seek it out, either.

So that’s where we are now. No more kids while we’re taking care of Dad (unless CPS calls, but that falls under the same category of unexpected pregnancy: we’d be thrilled but we are not going to seek it out). This was an unforeseen conclusion of the choices we’ve made, and logically I still believe it’s the right choice. But my emotions are less easily convinced. I still want more kids. I still miss the babies my heart feels should be in my arms and my womb right now, but aren’t. I wish it were as easy as everyone suggests, “Well, you can always just try again!”

We want to. But we won’t. God help me to be content, and to perform well the work You have given me for now.

Friends, please be in prayer for our claim representative to research ALS well enough to understand that my dad does qualify, without question.

• We moved out to to the country to live with my dad. We are adjusting to country-speed internet access, which is partly to blame for our long break. We really enjoy the space and the house and the kids love the cows. The girls also each got a kitten, who will get their own post soon.
• We lost Baby Peanut at 14 weeks. The doctor said it was likely due to a chromosomal abnormality, meaning just a fluke, and that it should have no bearing on our ability to bear further children. It is still very sad and very hard.
• We “gained” and “lost” another baby. JuneBug calls him Baby Jay-Jay. Late October we got a phone call from Child Protective Services, informing us that Bug’s biological mother had just given birth to another baby, and his plan was adoption, did we want him? Of course we did, so we got everything ready and opened our hearts to bring him home. Two months later we found out his plan was changed to reunification with his mom and he’d been placed with a relative instead of with us. The only way we’ll ever hear of him again is if CPS needs us to adopt him at some point in the future.
• We are currently working on selling our house and improving the farmhouse.
• We had a good Christmas. My younger brother and sister came up Christmas eve and spent Christmas morning with us. The next day I gave the girls haircuts, and they turned out super-cute.

Quite a roller-coaster few months, and I may or may not expound on these topics in future posts. But, for what it’s worth, I’m back.

This Saturday E, the kids, my dad and I will be walking (or riding in a wagon, stroller or chair) for my dad and others diagnosed with Amyotropic Lateral Sclerosis (ALS). It’s the annual Walk to D’Feet ALS! Our team goal is to raise money to support ALS research as well as assist those diagnosed with the disease. The money goes to research and to community-based patient services, so some of the donations will be directly helping my dad and others in the area!

If you’d like to pray for my dad, you can call him Poppy, and he was diagnosed in April of 2007. Right now, we are specifically dealing with the insurance company’s reluctance to cover claims and with Dad’s diminishing ability to walk, so targeted prayers on those issues are much appreciated.

Ranting.

I have a second blog, a family blog in which I can post pictures and use my children’s real names and go on and on and on and on and on about how my children are the most adorable on the planet and not lose readers with my pity that they can not possibly have children as wonderful as mine. I never got much into scrapbooking, so I use that blog as something of a record of my children and our life.

Unfortunately, my family reads that blog. This means that if it’s not something I would say to their face or debate with them in person, I am not going to bring it up. So I only blog about the cute, fluffy aspects of life. Meaning I can’t gripe about my mom’s choices, my dad’s disease, the fact that I never want to meet my mother’s new husband (I will never ever EVER call him “step-father”) as long as I live, however unavoidable that may be, I can’t weigh my options re: homebirth (because that’s just not safe, you know) for the new baby, I can’t even talk about being frugal and the absolute ridiculousness of my sister purchasing a $5,000 wedding gown with a total wedding budget of only $10,000, because I’m the matron of honor and I can’t risk offending her, or anyone else for that matter. In short, I can’t really be all of who I am and talk about what I believe, and after a few months of attempting to blog only over there, I am stifled and gasping for breath.

So you will get an earful. (Eyeful?)

Not that the posting will be frequent yet, as within a few weeks we will finally be making our move to my childhood home. This move actually fulfills a dream for me, to see the house that my dad built on 26 acres in the country kept in the family, regardless of what happened with or to my parents. Now that my parents are divorced and my dad has a terminal illness requiring care, we are moving to this house with my dad. It’s the perfect place for my dad and us. He loves it out there, and I think it the perfect place for him to live and enjoy the peace and love of his family, and the encouragement of his grandchildren’s presence. It’s big enough for all of us and any future children, and the structure will be easily adapted for accessibility once he’s in a wheelchair. On top of all that, I think it almost the most serene and beautiful place in the world, and it thrills my heart to think of my children growing up out there, tromping the property as I did, planning picnics and adventures, sleeping in our childhood bedrooms, climbing the trees that were too small when I was young but are now huge and laden with heavy fruit (the pecan orchard my dad planted), catching bugs and having lots of pets. E and I have dreamed of having property and raising animals and a huge garden, and we are willing to work hard to make it a reality.

Which is a good thing, because the place has been vacant for a year and the grass is as high as my armpits, the pool now harbors frogs and turtles, and the wasps have colonized every nook and cranny on the wraparound porch. There is a lot of work to be done. So I am grateful for our young age and our vision and our willingness to work.

And I just pray that by the time we get the place back to its former glory, the absolute rape of our rights and outright abuse of eminent domain known as the Trans-Texas Corridor has not become reality and poured an ocean of asphalt over the entire place, prostituting our home and property to the purposes and profit of a Spanish company and our corrupt Texas politicians.

(Oh yeah, I forgot to mention politics on the family-forbidden-rant list.)