Poised and Ready

She sat regally on the bench waiting for the bus.  The teal colored pillbox hat perched lightly on her head as the wispy netting grazed her forehead, shielding sparse eyebrows.  She stared straight ahead with deep concentration.  Her wrinkled hands held tightly to the worn, brown leather purse.  Brown age spots dotted the tops of her hands as the veins swelled like tributaries from a mighty river.  A long, silver car slowly approaching the bus stop stopped.  Unfolding himself from the driver's seat, a tall, thin man emerged.  He began walking toward her.  Her unblinking eyes flinched momentarily, squinting as the man approached.  He nodded his head slightly; her face creased with an ever-widening smile.  He offered her his arm.  She rose from the bench, walked to the car, and entered the door that opened to receive her.  She sat poised and ready.  Her son sighed with relief; he found her.

Reframing Life in the Presence of Critical and Chronic Illnesses

Back to School!

Today's post comes from my friend Julie.  Julie and her husband parent two children, Sierra and Sawyer.  I gain new perspective whenever I listen to Julie.   Grab a cup of tea and listen in to a slice of life from a hope-filled family.  

 Can it really be that school starts tomorrow? Is the summer almost over? Say it ain't so, Joe. It has been a GREAT one. Yes, Si started it off with tons of medical appointments, but once that was out of the way, the fun kept on rolling.

Four years ago at this time, Sierra, now nearly 15, was in the midst of chemo, kidney and heart failure. Next summer, dialysis, wheelchair, swooning. The following summer, rebounding from her 2nd kidney transplant and all the chaos that comes with moving to a new house. Last summer, moving toward more stability and what passes for normal around here. This summer -- nirvana, Ayers & Mutchler style.


As noted above, Sierra's life still entails, and will likely always entail, lots of medical support -- doc appointments, tests, meds-meds-meds -- 30 plus pills a day, feeding pump, etc. Her significant intellectual disabilities make every day an interesting adventure. But at least this summer there were massive doses of fun-squared blended in, especially this August.

The month kicked off with Sierra at sleep away Camp Sunrise (cancer camp) for a full week. She was home for only a few days before off we all went to Milwaukee (that's in Wisconsin ;-) for a long weekend to celebrate Max's parent's 50th Wedding Anniversary. We also managed to visit the Wisconsin State Fair (which would eat the Maryland State Fair for a mid-day snack) and we dined on deep fried cheese curds and deep fried pickles (whoa, those pickles completely rocked).

Pit stop back in Balto for a week to repack our bags (and go to work for the grups) and then we took a true-blue, kid-centric, wacko-fun family vacation to see Grandma Jane and Grandpa Leo in Tampa -- and to the Nickelodeon Hotel and Universal Studios in Orlando. There were slimings, Sponge Bob low-fives, a beach romp with Grandma, sing-a-longs with Barney, and flights through Hogwarts with Harry Potter. It was all wonderful, magical -- full of kid smiles, squeals, and laughter. Moments to remember and pull out on rainy days -- memories which can re-energize and nurture hope for more, and more, and more sweet times.


Of course, real life is messy, even vacation life, so there also was overly tired and cranky kids (and sometimes even parents) worn thin and mean by too much time spent in planes, trains, and automobiles.

There was a little, pink, Firefly cell phone that even went airborne, we suspect, on The Mummy ride. Miraculously, it survived its night in the tomb and was reunited with Sierra the next day at Universal's Lost and Found.

Not reunited with Sierra was her yellow purse, pink wallet with a few dollar bills and clear contact info for me, AND her iPod Touch. That somehow disappeared while we were at Nick Hotel. Sadly disappointing that some parent did not take the opportunity to teach their children well when they stumbled upon that purse.


Sierra can be pretty forgetful, and as she most likely left the purse in a common area of the hotel, Max and I were sympathetic to her loss, but also saw a teachable moment. The iPod Touch (a hand-me-down from brother, Sawyer, 11) is a much beloved, helpful, and instructive toy for Sierra. She uses it at doctor's offices, on planes, when she feels anxious and needs to calm herself and focus, etc. As tough as the loss was going to be for her, we decided we'd wait until her birthday on 9/28 to replace it. Or that was the plan.


On returning to Balto and reading a facebook post about a young adult with cystinosis, plans changed. I'm fb friends with many parents who have children with cystinosis, or young people living with cystinosis. There are only about 300 people with cystinosis living in the US. Its great to support each other through the web, even if we are not able to physically be close. We cheer each other on, and comfort each other when times become challenging.

As I read a fb post after getting home about a young man who passed away at age 25 from cystinosis in Tampa Bay, coincidentally, at the same time we were vacationing in Tampa Bay with Max's folks, my perspective on lessons and time changed. Preston's Story: http://www.tampabay.com/news/obituaries/preston-towriss-lived-a-full-life-despite-terminal-illness/1117741. Although we hold on to the hope that the medications and interventions developed during the last few decades will slow down damage from the disease and improve quality of life, there still is no cure -- for now. Preston's loss of sight in particular reminded us how important it is to give Sierra her hourly eye drops all day long. Everyone living with this disease is an inspiration as they tell a story about perseverance and resilience.

We don't want to spoil our kids. We want to help them learn and grow in to good, kind, caring, responsible, loving, thoughtful people. But we also are constantly reminded about time -- how uncertain it all is. Three young people with cystinosis have passed away this summer. Three out of three hundred in a few months time. If an iPod Touch can bring Sierra some comfort and joy, why wait until the end of September? Happy Birthday now! Let's make every day a birthday for all of us. Like a birthday prompts, let's look back at life and think about all the good and the hard and how it has brought us here, and anticipate the future with hope, and yes, maybe some trepidation as our path through this patch of forest has not always been free from brambles and hungry wolves. Sure, we need to keep watch, but even more importantly, we need to keep joy.

Sierra has proven herself to be one tough, if tiny, contender. Because the future remains uncertain for any of us, especially those among us living with chronic and/or critical health issues, we're trying to be mindful of making each day a summer vacation extravaganza, birthday blow-out, anniversary bash, and joyous holiday celebration.

So, on this last day of summer vacation, I'm going to dance with my kids, build puzzles with Sierra and help her play solitaire on her new iPod, smash some zombies with Sawyer and sing his new favorite song with him which he's belting out and blaring loudly and endlessly as 11-year old boys like to do, and go out to eat at Edo Sushi -- making sure to bang the gong as we enter and exit the restaurant to call out the joy and make this day sweet and memorable.

Julie

Family Fasting

We returned home from a week of an extended family vacation at the beach. 

We enjoyed food, fellowship, and funny stories.

During the same week, I heard in some cases, and observed in other cases, the brokenness and pain of illness, sorrow, and unmet desires in extended family members and friends.

Is not this the kind of fast I have chosen: to loose the chains of injustice and untie the cords of the yoke, to set the oppressed free and break every yoke?  Is it not to share your food with the hungry and to provide the poor wanderer with shelter - when you see the naked, to clothe him, and not turn away from your own flesh and blood?  Isaiah 58:6-7

Over the years, I experienced the grace of being set free from chains of injustice and cords of yokes.  Loving care provided me with shelter, fed my hungry spirit and soul, and clothed my nakedness. 

So, it is with a desire to comfort people with the comfort I received, that I fast.  With God's grace flowing through my heart and hands, I fast by...

loosing chains of injustice

untying cords of yokes

setting the oppressed free

breaking every yoke

with the Father's love, the compassion of Christ, and the power of the Holy Spirit.

Room for One More

Recently, I attended a baby shower for my dear friend Vicki's son and  daughter-in-law who are expecting their first child.  What a joyful time we experienced as gifts were unwrapped and the air carried expectation for the very soon transition from young married couple to couple plus baby!



One of the highlights of the day occured when Vicki's mother, Louise, shared the story of how she and her husband added over 8 foster children to their family of two parents and four biological daughters.


The story went something like this: Louise's mother wanted to open her home to foster children, but it just did not come to pass.  Louise and her brother grew up together until her brother died at age 12 years.


After seeing the movie, Room for One More , Louise began the process of opening her family's home to children with special needs.  The children came, one after  another, even a set of twins!  In fact, one of the children (now an adult) stopped by to see the family at the shower!


After the baby shower ended, I had the pleasure of seeing the house in which this remarkably generous family lived.  As I walked from the kitchen to the living room and from bedroom to bedroom, and outside where the large garden once laden with corn and fruit trees lay quiet, my mind and my heart opened up to the sacredness of what transpired in that home...


No matter how severe the loss or how recent the trauma, the power of being chosen to join a family - to belong - brought light and life to so many children.

"A father to the fatherless, a defender of widows...God sets the lonely in  families."   Psalm 68:5-6

As I continue counting to 1000 gifts along with the Gratitude Community, I am so grateful that there is room for one more, always....  Today, I am grateful for:

#262  my mother and father who gave me life and lessons

#263  grandparents I did not meet, but who helped shape my life

#264  my siblings whose wisdom was often conveyed by observation

#265  my siblings for memories and shared experiences

#266  the many aunts, uncles, and cousins who added to family life

#267  my husband, my dearest friend - loving you and living with you is an honor and pleasure

#268  my daughter - the winsome and wise one who continues to delight with words of life

#269  my son - so wise, so determined - joy boy grown into man with purpose and destiny

#270  my family through marriage - a tangible example of what it means to be accepted in the Beloved

#271  my Father, Jesus, my Redeemer, Holy Spirit, my Comforter who made room for me

Love Calling

Being a mother is a gift I cherish.  The memories are still fresh as I recalled the moments when I first saw my children.  Now they are adults, still bringing joyful surprises on Mother's Day.  I squealed with delight when my young adults (who live far away) coordinated a call so that I could speak with them at the same time, despite the challenge of different time zones!  How delightful to experience the privilege of parenting.

I join the  gratitude community today as I continue counting 1000 gifts.  Today, I am grateful for:

#242  the love of my Lord, who taught/teaches me how to love

#243  my beloved husband whose love, wisdom, and commitment multiplied over the years

#244  my children, each one a gift from the Lord

#245  my mother, the one left motherless at such a young age, yet cared for and nurtured by God's hands extended

#246  my mother-in-love, living to give

#247  my true love's laughter, complete with twinkling eyes

#248  a weekend of connecting with Jesus and with 44 lively youth at concerts

#249  facilitating conversations of mother journeys at a middle school  mother/daughter gathering

#250  dear friends who provided the container of support for one another over the years

#251  family - Lord, you grafted me into your family and you gave me family; I am yours!

Clinging souls upheld

Hospitalizations of loved ones unleash prayers for mercy and health.  The faithfulness of praying family and friends adds strength and grace during busy days and long nights.  What a blessing to experience such support and comfort. 

In addition to praying friends and family, the Lord holds and sustains the one who cries out; the one who clings to Him. 

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"But you are a shield around me, O  Lord; you bestow glory on me and lift up my head.  To the Lord I cry aloud, and he answers me from his holy hill."   Psalm 3:3-4 

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"My soul clings to you; your right hand upholds me." Psalm 63:8

While clinging to the Lord and receiving the gift of support from family and friends, my heart is grateful for:

#232  restorative power of blood

#233  oxygen for body and soul

#234  check in phone calls

#235  overstuffed chair time for reading, writing, praying...

#236  trust lessons that emerge from unlearning the tendency to lean on my understanding (still unlearning)

#237  His unfailing love resting upon us

#238  child-like ability to carry on in the midst of pain

 #239  singing - really singing - in the shadow of his wings

#240  visits to help family and friend

#241  Strong and Loving Lord

Interested in joining this Gratitude Community?