Change of Heart

Thank-you, Kathy Hill, for tweaking my heart… For 10 years of Little Miss Sweetness’s life, the primary focus of my caregiving seemed to be providing safetyand nurture, and meeting her basic needs out of a wealth of mother-love. Intermingled in there, was the role of providing opportunities for her to develop interests and friendships, but her attention span was challengingly short for her to engage for long. She continues to be passionate about those who regularly people her world, and a variety of canine and other four-legged friends; squealing with delight to encounter any of them, whether at church or school or in the grocery store; but for the most part, anything else fails to hold her attention for long. As Little Miss Sweetness has becme more adept at handling her own mobility safely, and navigating social venues, it has become increasingly important to access opportunities for her to grow in her understanding of, and enjoyment of the world, to facilitate interconnections between her and the rest of the planet. It has also increased our ‘conspicuous quotient’ considerably; and while I enjoy being the center of attention, I like to reserve that for when we are ‘looking smart’, not when we are piecing together social appropriateness. We used to fly under the radar as just a mom and a large baby…no more. So while Little Miss Sweetness wrestles excitedly with whomever new she gets to meet, ‘mom’ wrestles’ with how we look. To a certain extent, I’ve slowly stopped wanting every possible opportunity for growth for my daughter, and started hoping we can just get through the church foyer without creating a scene. A scene for whom??? I used to think the whole world was a stage for lucky children…

I’m not sure when my attitude changed. (It was probably always there to a certain extent; that wanting my parenting to be validated by the behavior of my children. We have long since let that go by the wayside – and I have a much greater sense of appreciation for parents who wrestle with exactly where to draw the boundaries. When I see them doing so with patience, they get my vote. ) I find it challenging to switch roles, even in my adult mentoring relationships, from the needed, to the needy and back again. Juggling expectations then letting go at just the right moment to allow someone to fly is tricky in the best of weather. This is accentuated in my relationship with my teenage daughter, who while beautiful in so manydetails of appearance and character, also needs me to provide many details of personal care. And she is beautiful…sensitive to the expressed feelings of others, aware of their need to be drawn in. She is delighted by humor and babies and living things. She is resilient to a fault. She’s happy. And she is appreciative. All in all, not bad for a teenager! But some small part of me, that while I cannot forget she is mine, all mine in the daily demand, has forgotten that she is mine , all mine, in the delight, the privilege to embrace in a mother-daughter dance. My husband, God bless his soul, keeps a loving view of who she is, and when I confessed my sorrow at this angst, he was quick to affirm the efforts I’ve made to create opportunities. Just recently, we took advantage of a non-school day to go out for breakfast – it’s what I would have done with my other girls, and we had a blast confusing the waitress with our fumbled ordering. My fumble, her gain! There is hope. But I am grateful for Kathy, who said in not so many words, “God does not see my disabled child any differently than He sees me.’ If that’s true, then I guess I don’t get to do so either. And if I am pressing along because this is what I have to do, rather than because this is what I am privileged to do, then I have missed a beat somewhere. I have missed seeing Jesus in Little Miss Sweetness, in someone’s invalid grandmother, or in a neighbor’s mother with mental illness. Our special charges are not measured by capabilty or fluency or even sit-still-ability, but just as one created by, and belonging to God, as fully as you or me.

I am reminded of a time in marriage, when I lamented the need to walk through one of my husband’s struggles alongside him, compalining all the while, “Why should I have to do this?” (I will probably have to do a full confessional on selfishness some other day…right after the one on arrogance.) In some moment of grace, I was able to catch a glimmer of truth; that it is not my chore, nor obligation, but rather my privilege, to serve one so loved by God. It’s part of why I share this post – not because I’ve figured this serving thing out – but because I’ve felt the struggle of it, in many of  the relationships in which we are called to serve one another. It is sometimes easy to bend one’s head to the task, even obediently; but forget to still one’s heart to the privilege. Godspeed.

jlf 2/4/13


Rooster Tails

Several years ago now, Little Miss Sweetness rode the smallest (12-inch) 2 wheel bike, still with training wheels. Due to the gentle slope of our street, she had controlled – assist one direction, and the hard, but not too hard, work of learning in the other.Three doors down, the neighbors had a large parking turnout, with a ‘dip.’ Occasionally, she’d hit the dip just right, and her bike would suspend on the front wheel and trainers, disengaging the rear wheel drive. The back tire would spin… We live in the Pacific NW, so ‘dip’ frequently equates with puddle, and Little Miss Sweetness’s spin would result in a high-flyin’ rooster tail. Spin, spin , spin and the water would fly. She would turn her head to watch, and giggle – such fun…

When I am spinning my wheels, at the pace it sometimes takes to let someone else grow, or ”do it myself”; or trying to be patient while ‘his’ attention is held elsewhere, or as any of a hundred other things seem to keep me from my agenda – when I am spinning, I do not giggle. I grumble, or fume (those are those silent, out-the-ear smoke signals), or complain. No giggle…For anyone. A few days ago, my husband told me I was unbearable. Spin… spin… spin…

Adult clients, with any of a variety of disabilities, can take  an hour, maybe two, just to get to the edge of the bed and get washed and dressed in the morning. And that doesn’t include breakfast. If you are that caregiver – spin…spin…spin. But that fiercely won, or preserved, independence is sometimes worth it. It’s a call based on what really matters, to that individual. In my experience, most individuals who grew up in the first half of the 1900s, ‘know’ you regularly need to help neighbors, rarely need a doctor, and when it comes to one’s own personal care, would rather do it themselves, or die trying. A lot of three year olds feel the same way, at least for the first 4 attempts. In a world of increasing tendency toward dependence and a sense of entitlement, we need to honor those attempts while they remain beneficial.

Two weeks ago, I took Little Miss Sweetness to a therapeutic horseback riding session. It was a busy day at BarB ranch, and they were short-handed, so in spite of my well-documented ineptitude with animals, I was allowed to lead a horse for the hour – a whole hour…I was ecstatic; not outwardly, but inwardly everything was agrin.  Would it not have startled the horses, I might have sung, or laughed out loud.  In reality,though, I was spinning… Before the lesson, I had planned to take a nap while I waited, because I was so weary. Usually I  watch, take pictures, coach a little from the sideline. But I was REJUVENATED! Giddy way out of proportion. Why???Because I love animals? Sorry. I think it was because I was given an opportunity to do something specific and finite that made a difference. I helped accomplish the program that day in a tight spot. The director was grateful. I heard one of the other moms whisper, “That’s one of the moms…” in a good way. I was the hero of the hour. Really? I just led Sinbad, the impeccably behaved horse.

So much of what we do as caregivers goes seemingly unacknowledged by anyone, or is feebly measured in its reappearing to be done again the next day, like laundry, and meal prep and baths and medisets. If you are a family caregiver, and you don’t occasionally  feel the frustration of this, I hope you will share your secrets of encouragement. I remember once long ago, down on all-fours scrubbing the bathtub. A weight descended as a small child (Laura, this was you) clambered aboard for a horsey-back ride. Suddenly bathroom cleaning – which does that reappearing thing –  was a wild-west adventure and we were off. Fast-forward eighteen years, and I am now awed at the riding ability… no, the stunning beauty of the women God has grown out of my wee charges. With tongue-in-cheek… at last, progress on the laundry pile. But what about when all that careful, loving attendance of another does not see progress, but instead serves accompaniment to their physical demise; such as occurs with aging, or terminal illness?   There is a beautiful melodious strain to those hours, a masterful gift created; but it seems exceedingly fragile in the unwrapping. The value or effectiveness of one’s tending cannot be measured in the spin. I’m sorry for this painful slowing – it hurts. And the gift…held only in your heart, may rarely be able to be shown to another. Cradle it whenever you need do so…

A few months ago, John Curley, former anchor of Evening Magazine, and a motivational speaker, challenged a group of caregivers, “The human brain is always looking for a problem to solve.” He encouraged us to give it a fresh one (as if caregiving doesn’t have brainteasers of it’s own). “Set a goal,” he said. “Make it outrageous, but do-able.” If your hours and energy are mostly garnered by your caregiving role, it might be time simple: try a new recipe, daily learn a new word – in a foreign language? Pray for 1 different friend per day. In the middle of our child-rearing years, my husband let me train for a marathon, while we continued running that ‘other’ marathon. It was a significant time committment on his part, but I must have been unbearable then, too, because there were times he told me plainly, “Go run.” The marathon mattered little to anyone but me, but it helped me to feel ‘undefeated’ and while I ran I prayed  for  persevering people, 26.5 and counting. When our kids were skiing, and learning to snowboard, I’d sneak up the mountain in ill-fitting boots, board in hand. I couldn’t get on and off the lift, but I could make it down the mountain. Oh, the exhilaration of  mountain air, cold exercise, and the thrill of learning one thing new. First time down, they had to wait for me, but I wasn’t sorry for one minute.

The point is, we long for forward progress, to cover new ground, to have our spent energy be measurable. At the sweet ripe age of 79, my mother started a nonprofit outreach to provide free clothing in a timely manner to those who need it. At age 81, she can walk maybe a 1/2 mile, but she is still running it. Why? Because, a confirmed homemaker, she’d rather sow while she spins. And every community outreach she does, has her equipping someone else to carry on. Little Miss  Sweetness on her bike was not merely spinning her wheels, but generating a full-fledged fountain, complete with rainbows.

I’ve written a few of the soul-saving adventures of my journey, But I’m not really very good at this in the day-to-day. The grumble is heard far too often. Speaking to myself, here’s the encouragement:

  •  Find one creative outlet, or disperse creative moments throughout your week.
  • Seize a wild adventure, whether it lasts a moment or a year, whether it be through a book or travel magazine, depending on your situation; or takes you OUTDOORS or to an art gallery
  • Climb over the pile of weariness to see or learn something new
  • Connect with others. Caregiving can be isolating. Allow our media-connected world to facilitate interactions with friends, provide you with prayer support and news of the outside world. But stay away from unnecessarily depressing and horrifying  shows and commentary. They will not lift your spirits
  • Give, even if it is only a few words, or pennies, or cookies…

And all the while, choose Godspeed on the spin…J

jlf 9/24/12

Entertaining the Holy

I’m finally getting around to my Christmas letter. I’m not the only one… I’ve received them from friends as late as Feb 14th.  But a thought that rolled around during the Christmas season, is now coming to fruition. It’s raw, but real.

Entertaining the Holy

Most of my life’s journey has been travelled at least in view of pleasant landscapes. It has not been difficult to be hopeful or generally optimistic. This Christmas, I feel hope wearing dangerously thin. After twelve plus years of caring for a special needs child, the threat of other trouble on the horizon leaves me filled with doubt as to how we will carry on. Is that my quota – one trouble per lifetime?  After reading countless patient histories listing multiple tragedies per family, I should know better.  And so I find my faith shallow, and my mind wrestling with angels over having to bear more. “Really, is this you, God, standing guard, yet letting trouble fall near?”  I had not realized my hope was so circumstantially defined. Oh, shallow soul that I am, only interested in investing where there are guaranteed returns.

 I did not win the wrestling match, so here I am; chief caregiver, charged with imagining and developing entertainment for one who is easily delighted, but too-soon disengaged. One who may rarely speak a publicly intelligible word or bear a job title. As I wallow in the sloooo-w progress we sometimes make, the calendar marches through Advent, and on toward Christmas, and I am supposed to be welcoming a Savior, preparing to entertain the Holy One….but instead am occupied with doing the same things over and over again, repeating the same simple guidances. 

How, in heaven’s name, does one entertain the Holy, with sufficient reverent pause…in the midst of persistent daily chaos (of my mind , if nothing else)?  Then I am reminded, “Whatever you did for one of the least of these my brothers…  My sweet angel, somewhere in the malformed taxonomy of human achievement, you will be called , ‘one of the least.’  The slowest pace, the lack of speech, the vague response. How slow am I , to realize that I am in the presence of the Holy; the holy intent to love one another, entertained in the daily give and grapple to take one step forward? The holy intent, ‘to bear all things, believe all things, hope all things…”A crushing thought deflates my frustrated agenda-o-meter: this, God, is what you have done for me: repeated the same simple commands, given cues, reviewed directions, gently guided me through the same steps of discipline, over and over again…You have borne my sin, and my propensity to stupidly repeat that sin. You have believed, expanding your breath of faith inside of  me, when mine was too small. You, God, have invented hope.

And you, too, dear one, are saddled with one of the least of these…slow wanderer that I am in the desert of misguided self-importance, here to walk you through your days. In a gross paraphrase of Joshua 5:13-15, the Israelites are poised on the plains outside Jericho, after much wandering to find their spiritual way; poised, to live inside the richness of God’s promise. Joshua encounters the ‘commander of the Lord’s army,’ who gives the message, “Take off your shoes (sandals), for the place where you are standing is holy.”

We too, or two, or six…,are poised, to live inside His promise. And on every occasion , whether the advent of something new, or something reviewed,  in which  we embrace with love, his intent in the struggle, we dance in entertainment of the holy.                                                                                                         JF12/4/11;3/14/12


About 4011caregiverstreet

‘Where the rubber meets the road,’  encouragement means truthful dialogue about how to keep traveling when the way is rutted, or the tires are worn. I’m not a caregiving expert, but I’ve been blessed with some real-world  experience via  parenting a special needs child, and working part-time as a healthcare provider. My PT  role involves training and support of caregivers in the physical care of a loved one. I am repeatedly amazed at the impact of a small word of encouragement. Parenting – well, how many hats can one wear in a day????? Truthful for me has to do with honest takes on what one faces, and a belief that God’s word is the bottom line in navigating life. The name 4011 Caregiver Street comes from Isaiah 40:11, which states, “He tends his flock like a shepherd:He gathers the lambs in his arms and carries them close to his heart; and gently leads those that have young.” NIV    Caregiving appears in multiple forms, related to children, illness, aging, special needs, fostering, mentoring; being a spouse or  friend, and the list goes on.  It is rewarding, challenging, exhausting, at times sacrificial,  and often unexpected either at onset(parenting a grandchild) or in practice. It regularly asks us to do that for which we feel ill-equipped , or unprepared(who knew children were so messy!!!). There may be other verses that more directly apply to caregiving as a whole, but God has consistently been gentle with me, as I continue down this unmapped road on worn treads. And He has been faithful to lead every, single step of the way. Always. and gently…  Whether you are caring for a newly born, or a newly-young elder, my hope is that you will find refreshment, hope, encouragement, HELP(like a great idea), and scriptural truth as you sojourn here. I’m guessing that tomorrow’s  ‘great idea’ might come from one of you; please feel free to share your insights and encouragements; they may be just what your fellow traveler needed to hear. 2/2012 J

Life in the sl-ooooow lane

Life as a “groupie” rarely appeals to me. Either I like to be the center of attention too much to share it with that many people, or I just don’t have what is required to fit in. I thought the latter was the case when I first moved to Bellingham to start a new hospital job. A large group from my dept would eat lunch together around a huge work table. I tried a few times to join in. It was awhile back, but if memory serves me well, conversations tended to veer two directions: sex, or patient oddities. Don’t get me wrong, I’ve nothing against sex,  but I didn’t really want to discuss it in a group setting (besides, one of the psychologists said he could tell what someone was like in bed by reading the lines in their face… There’s brave, and there’s stupid.)  The second topic, patients,  in this day and age, would definitely violate confidentiality restrictions as lunchroom subject matter.  It took me a long time to figure out that the occasional laugh about a patient’s idiosyncracies, rather than dishonoring, was in some ways a survival tactic.  Much of medicine (and caregiving) is dealing with things that are not how they should be, or at least how we expect. After awhile, ones starts to feel pushed off balance by the whole thing. I mean, tell me you thought your baby was going to blow out his diapers all over the pastor’s wife, or that your aging parent would sometimes repeat not only himself, but yourself, as well.  Sometimes laughter turns things bright-side up again. Certain days, it’s either that or crying. And while I’ve nothing against crying either, laughter helps. ‘Life in the sl-ooooow lane’ is my attempt to lighten up, to take  our eyes off ourselves, put them back on living, and suck in enough oxygen for the next go round. 2/21/12