Thoughts for Giving Tuesday: Refugees Welcome

When I saw the BBC headline yesterday that the Ohio State attacker was a refugee, my heart sunk. We’ve seen the anti-refugee backlash – after the Paris attacks, and after San Bernadino. As soon as I saw the headline about the attacker’s background, I felt frustrated in anticipation of the sentiments and story lines that will inevitably flood airwaves in the coming days and weeks. It breaks my heart but also makes me livid, because I know the lies and fear that undergird this anti-refugee rhetoric that will surely come.

Since it’s Giving Tuesday and the holiday season – I just wanted to take a few minutes to pound out this blog post and reiterate why it’s imperative that we don’t respond with fear and withdrawal in light of the revelations about the Ohio State attacker.

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We’re going to hear politicians, including our President-elect, use the example of this attacker to promulgate anti-refugee sentiment and fear. But let’s remember that refugees are thoroughly vetted. They receive the greatest level of screening of any group that moves to the United States. Refugees undergo screening by the National Counterterrorism Center, FBI, Department of Defense, and the Department of State. They have interviews with the Department of Homeland Security and undergo subsequent biometric security checks. (More details on that process can be found here and here.)

Let’s remember that the US has resettled 3 million refugees since the passage of the Refugee Act in 1980. Aside from this isolated instance and the arrest of two Iraqis in Kentucky, no other refugee has been arrested or convicted on terrorist charges. (Source) As The Economist article states clearly, refugee resettlement is the least likely route for potential terrorists.

(The debating part of my subconscious would also like to make the oft-cited point here, that when our nation has experienced countless mass-shootings, generally at the hands of loner, white males, that zero action is taken to target this demographic. Calls are made to ‘shore up mental health services’ and/or improve gun control measures, but we don’t decry this demographic or slight low-and-middle income white men.)

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Let’s remember that the US refugee resettlement program focuses on helping the most vulnerable. We bring in widows and orphans. Refugees with medical needs  that can’t be treated elsewhere have their cases prioritized. Our resettlement program focuses on family reunification. Resttlement of Afghani and Iraqi families gives priority to those who aided the US government (and includes many who would have been targeted were they not resettled). Resettlement services have strong acculturation and work-based components. Having worked in the field, I firmly believe the program is rooted in all the best parts of our American identity.

Additionally, as a Christian I want to remind those who ascribe to Christianity that this season is all about a couple, who was forced to flee their home and take refuge in a foreign land in order to protect their newborn son. Please don’t miss that stark contrast you make if you give into fear and support voices to close the door on the vulnerable during this holiday season.

Beyond a Christian moral imperative, let’s not ignore the humanity of refugees around the globe. I shouldn’t have to plead to my Christian brothers and sisters to continue welcoming Somali, Syrian, and countless other refugees out of a Christian moral imperative. I hope you will think of what you would want to have done for your son or daughter, mother or father, sibling, closest friend, if the roles were reversed.

I understand the counterpoint -- the impulse to want to protect your children and country. However, I

think that impulse is stoked by politicians who are selling a false narrative (lack of security in the process) for political gain. We don't have to (and are not) diminshing our security in exchange for opening our doors to the most vulnerable.

I firmly believe in the safety security, and vetting process woven through every facet of the US refugee resettlement process. Refugees pose no greater threat to our nation than do other, fellow citizens. (See the facts/figures above and here.)

Don’t let politicians deceive you with spurious threats of ISIS lying in wait, cloaked as refugees trying to sneak their way into our country via a weakly guarded resettlement process here in the US. This is unfounded and untrue.

I implore that on this Giving Tuesday, please consider supporting refugee resettlement agencies. Or at minimum, please don’t give in to the anti-refugee rhetoric that will be circulating in the upcoming days, weeks, and months. Speak out, and speak LOUDLY.

{source}

Donation options:

Kentucky Refugee Ministries

UNHCR

World Relief

IRC

Save the Children

Why We Walk: The Recap

Walk details:
The walk is on Saturday, August 27th. Our group will meet in front of the fountain outside the Fayette County District Court 9:15 and 9:30. A small ceremony will be held at 9:45 and then we will walk at 10. The walk is approximately two miles long, with a shorter mile loop for those who need it. See below for parking details from the Alzheimer's Association.
Our team will have North Lime donuts downtown to celebrate together after the walk. All are welcome!

Why we walk:
1. We walk to speak out.
2. We walk to support clinical trials and research.
3. We walk to support caregivers.
4. We walk to honor and value the sick and elderly in our community.

It's almost walk day and we are getting excited! Thanks so much to everyone for their love and support -- when I head downtown on Saturday I won't just be joining friends and family from nearby, but folks driving in from Louisville and Chicago. I'll be wearing the sweatbands that friends mailed us four years ago to let us know they're with us. I'll be thinking of an email my friend Brian sent when I emailed out about a previous year's walk, telling me he was keeping us in his thoughts as he studied to become a doctor, learning about the pathology and existing treatment options for Alzheimer's patients. I'll be thinking of friends who over the past years have driven far for other big (and small!) events - painting bedrooms, baby showers, even just coming up to grab a drink and keep us company. I'll be thinking of friends from elementary, middle, and high school who, though I haven't spoken to them in years, came out to walk in previous years or made donations this year to show our family love and support.

Thanks for giving us a space to share about Alzheimer's over the past month. The disease can be isolating and lonely -- you've allowed us to shine a light on different aspects of the walk, and the entire process has been incredibly encouraging for us. We are grateful for you and we'll be carrying all of your kind words and good vibes with us on walk day!

xo,
Ellie

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Parking 
The following parking options are available to Walk to End Alzheimer’s participants: 
-Chase Tower Garage, 201 East Main Street Free parking 
-Hilton Hotel Garage, 369 West Vine Street - Free parking if you tell cashier you're with the walk when you exit 
-Courthouse Garage, 105 Barr Street - $1.50 if you pick up a discount voucher at our parking tent.

Why we walk, Week 4: Because getting older is not a bad thing

Do you ever find yourself bemoaning how old you feel?

I do it all the time, and I’m only thirty. It’s ridiculous on two levels – on the one hand, I’m still young – likely more than half of my life is ahead of me. But the second and more important absurdity is that my underlying tone is negative; my statement is a couched slight toward the elderly.

Earlier this week I listened to the podcast ‘On Being’ andheard Krista Tippett speak with Xavier Le Pichon, a renown geophysicist and humanitarian. He spoke candidly about his experience caring for his mother who suffered from Alzheimer’s, and in that same segment mentioned the “all people are part of humanity…humanity is not complete if you have some parts out". (See below for the full quote.)

This week I’ve been reflecting on how Alzheimer’s disproportionately affects people who are older, in their last season of life. I’ve spoken often about how this isn’t just a fated illness that happens to our elderly, or a normal trajectory of aging for many. And yet, as I speak about Alzheimer’s I feel that this point needs to be reiterated, time and again.

Part of the challenge is that individuals with Alzheimer’s literally fade away in language and personality. It is easy, and almost default, to brush them aside as their memories fade – to shift to loving them in a paternalistic and patronizing way. (I so often hear in Alzheimer’s support groups “well they’ve just become so sweet and like a child.” Even the other day on Facebook I saw someone comparing a frustrated Alzheimer’s patient to the behavior of an angsty teen.) Our tendency to push individuals aside is not just because of their illness, but also because our culture views aging as something negative – something to avoid and dread.

As I write this it’s important to acknowledge and confess here that I am not just pointing at “society”. For those who have watched our Alzheimer’s walk videos, you’ve likely noticed how I sometimes speak to Mom as though she is younger or a child -- coaching her through the videos and helping her string together broken thoughts.

On my best days I am slowing down, helping her connect pieces, building up who she is and fighting for her to find her words and find herself. But on my worst ones I am chiding her, rushing her – impatient and eager to get out the door. I’m angry that she isn’t more capable, frustrated that she’s holding me back. I am just as prone to diminish and treat her in a childlike manner, and thus find that I have to constantly fight against the natural impulse to ignore and minimize my mother’s value as an older and sicker person.

While I’m continually grappling with my innate impulse to think of aging as a negative, Alzheimer’s also forces me to consider aging in stark contrast to the dread often associated with growing older. I am perpetually reminded in small ways of the richness and beauty of old age that has been stolen from my mother.

She and I have been robbed of the sacred season when parent and child have the potential to become good friends.

She can’t hope to watch her grandchildren grow or find fulfillment in imparting wisdom to them as they navigate their transition to adolescence and adulthood. 

I’ve tried to cram in a few bucket-list trips with her – to Greece and Spain and Maine. But I know that if my mother had a normal retirement, that she and I might have had years worth of annual road trips ahead of us. I often day-dream of the national parks tour-that-might-have-been  – camping under the stars, scaling mountains, and descending into valleys bursting with wildflowers.

So while I mourn the reality of our situation and the fact that Mom’s golden years have been shortened, I concurrently seek to fight back against the impulse to dismiss the elderly, the vulnerable. 

I try by seeking to counter this in the everyday moments.

Before I snap at Mom for asking me a question five times, I try remind myself of how scary it must be for her to lack a full grasp on time – yesterday and how it relates to tomorrow.

Before I get frustrated that I have to spend my only free hour of the day making my Mom’s monthly calendar or planning meals for such a big family, I try to remind myself of all the unexpected bursts of joy I get to catch each day; I get daily glimpses of Mom huddled in a tent with Asher in the living room or walking Moss until he dozes off to sleep.

Our family is attempting to remind ourselves that aspects of our life are sweeter and more abundant because we have such a mixed age group living under the same roof. And as we prepare for the walk, we are reminding ourselves and others that our society should exalt and honor individuals in every phase of life. We walk to remind ourselves that our aging mothers and fathers, grandmothers and grandfathers, are no less cherished or important than our children. This week, we walk to remind ourselves of the inherent value of each soul – even those who are seemingly fading away.

We walk to bolster the spirit of discouraged Alzheimer’s patients – to assure them that memories aren’t just housed within our own minds, but that they are flowing through our community – embedded within stories carried by the neurons and synapses of their children - stored deep within the souls, the glorious vessels of their grandchildren – vibrant and dancing in the laughter that emerges when longtime friends gather to reminisce. 

We walk to remind Alzheimer’s patients – young and old - that they are still with us and will remain with us long after their memories can no longer be recalled within their own minds. We walk for them on Saturday, and we will carry them with us through the next generation and beyond.

We hope you’ll join us.

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Human people are not adults in full possession of their means. Human people — it starts with babies, it continues with growing people, it continues with adults, it continues with older people, and with great age, and people who die. All of that is part of humanity, and humanity is not complete if you have some of these parts out.

And the way to build the society is the way to integrate these people in a way in which they can interact and each of them can find out that they have their place, that their life has a meaning, that they are needed by the others. So often I have found, for example, among very old people that they have the impression that they are not useful anymore. Nobody needs them. And then they want to go. They want to go. So there is this problem that the society cannot live by itself if it doesn't recognize that it's heterogeneous and highly diverse.

Why We Walk, Week 3: To Support Caregivers

This week I want to write about the ups, but mostly the real challenges

of caregiving. I could get really rambly (and this post is by no-means short), so I've divided my thoughts into four key takeaways I'd share if I had to summarize -

1. Caregiving is complex.

One of the greatest daily challenges for Charlie and I surrounds naptime for our kiddos. Asher naps from 11am-1pm, a time of day that I’ve come to dread. I can boil the source of this angst down the basics – it is nearly impossible to keep Mom from going upstairs or clamoring around the house during this time frame. A simple ‘please be quiet for the next two hours’ doesn’t work because she forgets, or she remembers but gets hungry, anxious, etc.

I’ve gotten wise over the years. I now make her sandwich before Asher goes down for his nap so that I don’t have to worry about it mid-way through the nap. I know to try and find an activity to occupy her time during that span. But even with all of these preemptive steps – some days this doesn’t go right and Asher gets woken up, or I get angry at Mom for being loud and nearly waking him up. The base-level, all-consuming anger grows not only at the tangible repercussion of waking up a toddler from his nap, but also from a deeper resentment that this is something I have to mitigate for as a new mom. Feelings of -- 

Isn’t being a new parent challenging enough?

 or

deep jealousy of other women who get help from their Mom are constantly bubbling below the surface.

This particular challenge is unique to our scenario. Many Alzheimer’s caregivers aren’t among the sandwich generation (those of use caring for children and parents). However, with Alzheimer’s each individual’s trajectory of memory loss is different – so I’m sure each caregiver you speak with could describe a specific, very particular challenge that throws their quotidian activities for a loop.

2. Caregiving is isolating. 

Early on I read the book A Bittersweet Season: Caring for our Aging Parents and Ourselves by Jane Gross, and I remember her highlighting the Catch-22 of how ‘no one in your social circle really wants to talk about the day to day things you’re doing because they are mundane and depressing, but on the other hand it is your entire world and you don’t have much else to talk about’ (paraphrasing here, couldn’t find the exact quote).

While the language is strong, I’ve found this to be mostly true. All of my friends ask and genuinely care, but it’s difficult to listen to someone share for an extended period of time about a helpless situation. It’s hard to sit with someone and hear about a painful experience and not know what to say. And, on my end, it’s hard to be vulnerable and speak openly about this during casual hangout times. The combination lends to often feeling like there isn’t a good, carved-out space to talk about the challenges – but that also often leaves me feeling totally void of anything to contribute when out with my other twenty-and-thirty-something friends, as caregiving (and now, parenting) has come to feel all-consuming.

3. Caregiving is un-sexy. 

I always think back to my favorite part of David Foster Wallace’s ‘This is Water’ when I use the term unsexy.

The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day. 

Alzheimer’s caregiving feels like the definition of the unsexy kind of love – the constant repetition, endless patience, and tiny-detail-esque management and guidance you provide is all-consuming and often unseen.

4. Caregiving is a calling that is central to maintaining healthy community.

I believe strongly in the centrality of community; I believe relationships and caring for one another are the most important thing we can contribute to throughout our lives. So, when Mom received her diagnosis I couldn’t see any other option than to move home. My career to date has been in the non-profit sector, and I can’t help but think that if we had less brokenness and abandonment of family and our immediate community, that there would be less need for the type of work that I do.

(Please know that I absolutely am not saying here that I think everyone is obligated or responsible to care for their immediate family member XYZ if they are sick, as relationships are complex and deep and there is so much involved.) But, what I do know is that I felt that I was in a position where I could help Mom and knew that it was the right thing to do. However, the decision to do the right thing meant embracing a significant shift for what I’d expected my late 20’s/early 30’s to look like.

Sometimes the hardest thing to do is the smaller, daily calling that is right in front of you. My community has been different but rich because of my role as caregiver. Overall, I’m grateful for how my experience as a caregiver has led me to deepen my dependence on my community and has forced me to embrace how to live in a more honest and authentic way.

(Click here to get to our walk page if you'd like to join us or donate to our team. Thanks!)

Why We Walk Week 2: To Support Research and Clinical Trils

Clinical trial.

Often when I hear those words my heart sinks and my stomach knots up, as it can imply an underlying sense of despair – an illness without a definitive cure. 

Mom was in a clinical trial for eighteen months, potentially taking a medication that focused on untangling that tau proteins that gum up and ultimately cause a break-down of her neural connections.

During the actual trial, much of the experience felt perfunctory – a constant ‘going through the motions’…answering the same questions –

 rank how your mother is able to do the following  -- 
- laundry?
- hygiene?
- reading a newspaper or book?

Every month I would robotically answer ‘with some assistance’ or try to hide the pang of sadness in my voice as I shifted an answer from ‘with some assistance’ to ‘not at all’. Life felt like a perpetual cycle of idle moments in fluorescent lobbies, halfhearted grins covering our sensed-impotence as we answered survey questions, and brilliant, multi-colored daily pill bottles filled to the brim with dull tan and bland white medicines – taunting us. (Are they real? Or is it just a placebo?)

And then, all of a sudden – the trial ended. I quietly wrote about this previously and tucked it away on the blog. But to reiterate – it was an incredibly painful moment, one that unexpectedly forced me to stare hardship in the face when I least expected it. I remember throwing my sunglasses on during my drive home that day, in spite of the overcast weather, to hide my tears from Mom. I hadn’t realized we’d reached the end of the study. (I thought we’d had another two weeks to a month, so I hadn’t mentally prepared for it to end.) Even worse – our exit appointment was poorly organized and I was pressed for time. This resulted in being told that Mom had tested too low to be considered for any other studies in quick, terse sentences as we were hurrying out the door. It felt like someone was pulling off the proverbial band-aid I’d placed on the much deeper laceration, one caused by the hopelessness underwriting the trajectory of this disease.

So, this year for the walk email I’m about to send out, I can’t include an upbeat or chirpy line about Mom’s participation in a clinical trial.

The reality is she no longer qualifies for any of the ongoing trials in our area.

While that was always going to be the case – that a cure wouldn’t get to market in time for her - having to face this harsh reality has not become less painful over time. I’m grateful for other simpler, fun, and engaging study opportunities. I’m grateful for adult day centers that keep Mom engaged and programs that provide activities for individuals to continue to stimulate their minds.

But, more than anything, I fluctuate between searing anger, debilitating hopelessness, and pat acceptance over the fact that a cure doesn’t currently exist. And so, in the meantime we walk to end Alzheimer’s because a portion of the funds will be applied to other clinical trials and research initiatives. We walk so that other families can have hope in the immediate term, and so that ours can continue to draw on hope that countless others (including our wonderful boys) will be spared from having to grapple with this wretched disease.

Why We Walk Week 1: Why it's hard to talk about Alzheimer's (aka: being honest and vulnerable on the internet is hard)

{our 'teensy bit of dread' faces}

Every year when it comes time to gear up for the Alzheimer’s walk, a teensy bit dread wells up alongside the enthusiasm and energy I derive from speaking out. While I am always uplifted by the fundraising process and the gathering together on walk day, trying to share about the experience broadly on the internet is a challenge. In part, I think it requires that our family open up a part of our lives, forcing us to be vulnerable and candid in a way that makes me uncomfortable.

One of my greatest coping mechanisms has been the discovery of the power of compartmentalization. I focus on the tasks at hand and shunt off the emotional waves and hard days. I often don’t really think about the struggles and darker side of this disease. Friends’ comments will echo in my ears “I don’t know how you do it…” If I were honest in those moments, I would delve into some long and rambley monologue about resilience undergirded by the pragmatic power of compartmentalization. So talking about Alzheimer’s online means de-compartmentalizing and getting knee-deep into the muck of feelings I often try to avoid, and that’s not always fun.

But the other reason why it’s a struggle is because it means talking about a hard thing in a way that is honest but not trite. The challenge is augmented because I want to talk about painful things that are happening to my Mom in a way that is open and honest, but is respectful of who she is. Much of what is happening to Mom is causing her to regress, but I don’t want to treat her like a child. I still want to respect the strong, resilient, brilliant woman that she is – but also to be real about what this disease is doing to her mind and abilities.

I write all of this just to highlight this challenge of the disease – simply finding language to talk about what is happening. It is especially hard this year because Mom has lost a lot of her ability to speak, and my knee-jerk reaction is to keep that off the internet (not just to protect her, but also to protect myself from having to really see what is happening).

But the Alzheimer’s walk is a time for us to speak out into the noise of our daily life about this 

constant struggle, to raise awareness and hopefully ensure that my boys won’t have to worry about whether or not they will have this disease because it is now lying dormant in our family line. And so, in spite of that tiny dread, we are diving in. Thank you for listening as we share weekly about different facets of this disease with the hopes that you will join us to Walk to End Alzheimer’s on Saturday, August27th.

{our 'how we feel when people respond to our conversations about Alz and come out and walk with us' faces}

{hold: my momma}

I was trying to figure out my intro entry for the Alzheimer’s walk and ended up going another direction – but here’s some scratch thoughts that were meaningful that I am tucking away on 

this blog…

…

Not to mention I always try to balance sharing the challenging with the uplifting in our journey, and that can be a hard balance to maintain. I could tell the hard stories – like the potentially infuriating moments of my weekdays at home, when my Mom may walk upstairs or make loud noises while my 18month old is napping (at no fault of her own – she forgot they were napping). Asher will wake up early from his nap, throwing off not only his whole day, but also my entire attitude and mood toward my mother. (Read: Rage, which is unfairly directed at her, but has nowhere else to go.)

Or sometimes Charlie and I will have a night out planned, and it can be derailed because Mom’s feelings get hurt when she feels like she isn’t included. (Again – at no fault of her own, she’s lost some of the ability to distinguish boundaries and the need for a couple to be alone. I can understand her fear of being alone, especially as her ability to hold onto the world around her is slipping away. But that doesn’t diminish my frustration over what seems like her ‘childish attitude’ in the moment.)

But then there are the ups – tonight I was feeling particularly frazzled and drained. I’d wrangled my toddler into bed on my own, in the midst of an (unusually) empty house, amid Morris’ cries and flailing due to a bad bout of gas. All I wanted to do was collapse and read, gather my thoughts, but he kept crying – shrieking. Mom came home from her outing and I trekked downstairs when I was on my last leg – asking her if she could just walk the baby and give me a bit of time to rest. And so she does, she steps in and works what I have dubbed her ‘YaYa magic.’ She walks the baby, blows into his ear, and makes lots of noises Charlie and I find a bit goofy. And while I’m furiously typing away nearby in the bed I also notice she’s whispering, over and over to my boy ‘I love you. I love you.’

Tears flow freely; I am richly blessed. I am so grateful for her hands,

her patience,

her love.

I am constantly mourning experiences we don’t get to have together as Mother-daughter and mother-new mother, but I will hold the memory of her whispering, singing over my boys in these early days. I will remember how her hands gave me rest, and how deeply she loves her grandchildren – it’s embedded as deeply in her as something can be.

"For the LORD your God is living among you. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs."  Zeph3.17

finding the sacred in the unexpected nap on a rainy Saturday afternoon

Significant anticipation has mounted around this weekend -- a longtime and dear friend is getting married to a wonderful woman. Charlie is a groomsman and said friends had asked Asher to be a ring-bearer in the wedding. I've spoken of this to friends and acquaintances alike, gushing about my excitement and prattling on about all of my Mom ANXIETY that he wouldn't behave. But of course, under all of those layers I was mostly just crazy-proud and excited to show off my boy and looking forward to the abounding joy of spending a weekend celebrating such an amazing couple.

So, you can imagine my heartache when my midwife did not give me the all-clear to travel this weekend. I asked the opinion of pretty much every human being I encountered if they would give me a green light to travel in spite of decent odds that I could end up giving birth on a West Virginia highway, hoping someone would validate my belief that this is 'Murica and you can deliver a baby safely anywhere. But apparently others (like, every single person I talked to) are of sound mind and realize the trade-offs don't make it worthwhile. So, I digressed and decided to hang back.

Prior to Charlie's actual departure and the arrival of the weekend, some serious sulking went down. But here I am on this quiet, drizzly Saturday afternoon and I've felt a well of all-encompassing peace. After soliciting help and hands to care for Mom, Corey, and Asher (so as to lessen likelihood of going into labor with Charlie gone) I found myself with a few hours all to myself at home this afternoon. I watched a chic-flick and then curled up for a nap with our pup.

It reminded me of our first years of marriage, our years in Baltimore -- and getting the chance to venture back to that time via daydream and a similar experience gave me solace and a sense of calm. This week has been stressful - filled with heavy and hard words exchanged with a loved one and trying to navigate a busy new job. On top of that the week was layered with decision-making about the arrival of our son and helping talk Mom down from irrational anger.

So as I sat in the quiet and listened to the rain patter, the dull thunderclaps, and the birdsong after the stormed faded, I found some time to let all of the worry and fear fall away and to reflect on:

• the sanctity of longtime friendship -- I wrote a long email to the friends who's wedding we missed trying to articulate my disappointment and augmented FOMO, and in the process I realized that much of it was centered on how sad I was that I couldn't be there because I'd felt esteem and kinship in the gesture of being asked to have Asher be the ring-bearer and Charlie be in this ceremony. As our extended family shrinks with the loss of ailing parents, Charlie and I have come to cherish the power of friendship and chosen family.

Sometimes the distance between our closest friends and the isolation of caregiving makes me feel removed and lonely. Charlie and I try to be very intentional and invest in relationships, but on our harder days we believe the lies we hear in the darkness -- that others don't care as much, or that prioritizing friendships is less important to others and we should abandon our efforts until they are matched in exact kind. However, weddings and big life events allow us to draw together and acknowledge the strength of the bonds we build, and how they bind us together through the communal commitments we make. While I am not at the wedding, having the space to reflect on why this weekend mattered gave me the time to remind myself that the closest of friendships extend between the months of not speaking and the occasional lunch. And I was reminded that we can build these lifelong friendships in the most unexpected of places - a testament to my husband's heart for people and the integrity of many of the individuals we love the most

• how my soul and self is resilient and enduring -- It's hard to articulate, but having to abandon my "5 year plan" and move home and shift my career path really threw me for a loop, leaving me to question my identity. I often find myself feeling insecure, a skeleton of who I was, and unsure of how to make even the most mundane decisions. But on this quiet Saturday afternoon, I snuggled up with our first babe (Josie) and remembered who I was when these kinds of afternoons were frequent and easy to come by. I thought quietly about how much Charlie and I have accomplished in the past four years, and how much we've done "in spite of" and my cup was full. Four years ago, we had all of this potential within our being, but we have risen to the tasks in front of us while still maintaining our relationship and ourselves, and I can't help but feel a swell of pride and confidence.

• the arrival of our son -- In the chaos of recent weeks and other decisions, I've had to focus on job and other family decisions. But the thought of meeting our son in hours or days is overwhelming and all-consuming. I can't wait for our household to grow - to discover his new little soul and pour into his being.

thoughts on second baby

My mind has been awash with impending-second baby fears and insecurities. I’m also contemplating an internal position switch at my job, and the combination of new baby and job change has me revisiting the home-work life balance fears of young momma in an all-consuming kind of way. My brain is flooded with the standard second-baby questions:
--> Our heart is so full with the joy and love for Asher, will we have enough love to share between two amazing little boys?
--> What will parenting be like when we are ‘evenly matched’ against our kids?
--> We’ve figured Asher out pretty well – but what will this next little guy be like?

But then these questions are further compounded when I start to think about juggling between life at home and more hours at work –
--> Do I/(will I) regret not having time with my kids right now while they’re so small?
--> What is the right balance of work and being at home?
--> Am I giving my family ‘enough’ of myself? Do I have ‘enough’ to give at work?
(And where on earth/what on earth does that leave for friendships?!)

I’m trying to remind myself:

• that there is no perfect balance of working and being at home; anyone telling you otherwise is lying/selling you something
• that life entails constant re-calibration/re-evaluation of your priorities 
• that you can always change course, so I should stress less about the big decisions and take each day as they come
• most of all – that I find my strength, that I am enough, when I depend on Christ and lean in to my community for guidance, love, and support

This current political cycle has been so marked by fear, that I loved when I stumbled on this quote/reminder this morning:

“If you knew how great is a mother’s love, you would have no fear.” — Peter Pan

It’s a healthy reminder as I prepare for baby #2 – my love as a mother for Asher (and for new baby, and all of my children) is enough – it guides my steps and my decisions. Even as I make some personal (seemingly self-focused) work decisions, they are grounded in my love for him, for Charlie, and for my family as a whole. And concurrently, I can trust that my path is made clear by my heavenly Father/Mother.

“Believe in a love that is being stored up for you like an inheritance, and have faith that in this love there is a strength and a blessing so large that you can travel as far as you wish without having to step outside it.”

balm: Spring and community

I don't know what it is -- winter blues, legitimate stuff we've had going on, or (likely) a combination thereof -- but the past two winters I've just felt...bludgeoned(?) by the time I reach the end of February or start of March. (Think: playing in quidditch, got-knocked-out-by-a-bludger, level of exhaustion.)

As I look back to the past two winters, I try to sort and name the challenges that have made the seasons feel so long and heavyboots. In January of 2015 I was trying to navigate re-entering the workforce after having a baby, plus helping my brother grapple with some serious mental health issues. This past year was less -- but I think the pregnancy knocked me out in a way I hadn't anticipated, and we continued to have weeks where we felt overwhelmed by the demands of caregiving.

When I think of both seasons and how we made it through, I think of the meals that flowed in when I finally had to collapse into the arms of our community. I am so thankful for those who have carried us -- my aunt, Selena, my grandparents, and my Mom's legion of friends. This past year we have plugged into a wonderful faith community and they have given me the space to be honest and vulnerable about some of these challenges, and have responded with generosity and kindness during the bleaker weeks. It has pulled me through,

On a related note, I am currently being drawn back to the other side of the support process. I have a friend who is currently going through 'a total shit time.' (Think: that scene in love actually when Emma Thompson is consoling a mourning Liam Neeson about his recently departed wife. I always feel like that bluntness best captures these terrible and ghastly seasons of life that we sometimes must painfully stand by and watch our friends weather.)

As our friend group has tried to figure out how to rally around said friend and envelope her in messages of love and support, I've been drawn to these things. First, an Op-Ed by David Brooks -- The Art of Presence. This is really sound advice (although not novel or the first time it's been shared). But I think it's the most helpful -- for what Charlie and I have needed in caregiving in past years, and  as a reminder of how I can strive to help others in mourning, sickness and loss.

I'd say what these experiences call for is a sort of passive activism. We have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness - to propose, plan, fix, interpret, explain and solve. But what seems to be needed here is the art of presence - to perform tasks without trying to control or alter the elemental situation... Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.

And secondly, I've been lifting up this song/prayer. My hope is that any of you who read this and are in a season where you are supporting a struggling friend, or in need of support yourself, find some comfort in some of these words.

My friend is worn and torn, he's badly wounded
I don't know what he really needs
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

He lives for love of what he knows
But he cannot put his trust in much anymore
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

Keep my friend safe, strengthen his eyes
The night has been long but the dawn is sure to be fine
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

EAGLE!

 ... was Asher's unprompted exclamation when we boarded the plane Friday morning for a weekend away in DC. A friend had highly recommended a visit to the Wonder exhibit in DC earlier this year, so I coupled a desire to catch up with friends before baby#2 comes with the impetus to see the exhibit and planned a trip.

The highlight of the weekend was getting away with my little guy and getting to watch him discover the thrills of the city in conjunction with his new-found ability to articulate his excitement using real-life words. The weekend was all "WOW BIG TRUCKS!" and watching him delight  in the good-life things, like finding a particularly big hole to stand in at Lincoln Park. It was fun to experience the city with new eyes -- to exult in the passing of a garbage truck with the same delight we found in being up close to Lucy the orangutan at the Smithsonian zoo. Asher was also gleeful every time we rode the metro, exclaiming "yayyyy choo choo train!" to the bemusement of all the DC commuters. It was a fun realization for all of the nearby adults to be reminded that in the eyes of my little 18-month old Kentuckian, a DC metro ride is truly grand.

Overall, it was a whirlwind of fun -- we lunched at Tortilla Cafe, played in Lincoln Park, soaked up the beauty of the Renwick exhibits, and traipsed alongside the DC masses through the zoo on the sunniest and most perfect of Spring days. Add in all the modes of transport in between and it was the greatest of adventures Asher and I could have imagined.

However! In order to react to the internet-tendency to curate and paint everything with brush strokes of perfection, I will include this last photo - capturing Asher's lack-of-nap COMBINED with why-can't-I-touch-these-awesome-exhibits breakdown in the middle of the Smithsonian. I did think it was slightly ironic that Asher and I both hit our most-tired moment midway through the museum*. Thus, the thing I had most anticipated prior to our trip, which was still awesome, was kind of a blur. The real treasure was the relaxed mornings in the parks with friends. It's nice to be reminded that the best moments are the ones we don't necessarily hype up - the unstructured parts of our trips and the subtle, secret, quiet moments.


*the greatness of this weekend is dedicated to John, Becca, and Katie - who co-wrangled my wiry toddler and were patient and gracious when he and I both had some travel-weary moments.

And then it was over...

This week I saw a photo series about working Moms – many of them in business pumps or attire, stumbling in the door – staring at a screen – brow furrowed and clearly multitasking.

This led me to think, if there was a photo series out there about Alzheimer’s caregiving, with a particular focus on the sandwich generation,  I would contribute a photo of myself at 9:30am on a Sunday morning. The kitchen would be strewn with messy dishes from a weekend breakfast. I would be blurred, slightly, with Asher in the foreground -- just starting to whine and lose interest in a toy. Meanwhile I would be hovered over the trashcan, furiously pulling off every godforsaken tab and bitterly punching out each of the twenty-eight pills from the blister pack for the medicine for my Mom’s clinical trial study. The picture would not capture that I would be cursing the fact that the packaging for these pills can’t be more user-friendly, bemoaning this “thorn in my side.”

It’s of note that Mom would be in the shower – I specifically chose to fill in her pill bottle on Sunday morning when she’s in the shower, even though this time window leaves me scrambling because Charlie’s already left for church, and thus my hands are full and my time is stretched. But I have picked this window because I feel a sense of urgency – I want to get her weekly pills all filled out before she asks me if it’s done for the seventh time and I inevitably explode, causing her to meltdown in tears and subsequently feeling gut-wrenching guilt myself. I also need to do it while she’s in the shower so she’s not standing over me when I do it, asking some other round of inane questions that push me over the edge. And lastly I have to do it on Sunday morning because if I wait until later, then the moment will pass and I will forget and she will miss her dosage of medicine for that morning.

Now, flip back to this afternoon, and imagine my shock when, out of the blue, at the end of a four hour appointment today, I was informed that the extension portion of her clinical trial study was over. 

Done. 

Finito. 

No more clinical trial study pills. No more blister packs and harried Sunday morning moments of pure resentment and frustration to anticipate.

This chore that I’ve loathed for so long and that captured the epitome of my frustrations in caregiving was pulled out from under me before I had the time to look up from my iPhone as I’d anticipated entering the next appointment. It also happened before I had the time 

• to request/(plead?) for an exception to continue on the medication between the period when the trial has ended but the medication will be introduced to the market
• to contact Mom’s normal neurologist to increase her medication level for a medicine she had to have tiered down while on the study
• to mentally grapple/map out next steps in advance.

 This isn’t surprising. In our roles as super-caregivers Charlie and I often find ourselves behind the curve in circumstances where we had intended to ask proactive questions, plan ahead and advocate for the best possible option. Week 72 of our clinical trial was almost fated to sneak up on me.

But now here I am, facing a blister-packless Sunday, and I am experiencing a very real flood of emotions 

• of a renewed reminder that the things we often bemoan are actually ways to forget how privileged and lucky we are (in this case, that we were able to get into such an accessible and potentially helpful clinical trial).
•  of the renewed anxiety and underlying questions about what to do next in the face of this illness. Now that this clinical trial is gone – what can I do to try and feign control and power to fight a (presently) unbeatable illness? What chirpy line of update will I include in my next Walk-to-End-Alzheimer’s annual update?
• of the bleak and shitty reality of the trajectory of Mom’s illness

I’m in a bit of a haze as I realize how much barren doctor’s office walls and bleak fluorescent lighting have been a barrier from impotence, and from processing some of the deeper meaning questions that I’ve previously just burrowed behind a wall of blister-pack directed, Sunday-morning angst-rage.

Art, Alzheimer's, and the most enjoyable research study we've stumbled on to date

I want to take a minute to break my blog-silence and gush about the "clinical trial" study Mom and I have been participating in over the past seven weeks. Calling it such feels a bit inaccurate, because it's been so much fun. Each Friday, we've been able to work with staff at the UK School of Art and Visual Studies to create some form of artwork  The research staff is assessing how these experiences can have a positive impact on patients with mild to moderate dementia. (Read more here!)

Read more here: http://www.kentucky.com/living/health-and-medicine/article57328868.html#storylink=cpy

The format of our weekly class is very basic: there's always a piece of artwork (generally done by a professor at UK or a local artist) that serves as a source of inspiration. We begin the class by discussing the artwork: What do we see? What feelings does the piece of artwork evoke? Sometimes, we'll discuss things like brushstroke technique, if a piece of art is more organic or geometric, or if a piece has more contemporary or traditional influences. What I've loved so much is that the conversation is basic and approachable for all us non-art folk -- we can discuss things that come from our basic impulse reaction and draw on foundational memories or experiences. The discussion has allowed both Mom and I to feel engaged with the artwork.

After we discuss the piece we generally create our own work using techniques from the artist we had discussed. We usually spend about forty-five minutes to an hour painting, and then wrap up and head home.

Here are a few simple observations I've had about the experience:

• Mom and I are generally skeptical at the outset, as we're both more right-brained and have never been very into creating art. However, each week we always leave feeling more relaxed, upbeat, and accomplished. We've both been pleasantly surprised at what we've been able to churn out in such a short time-frame -- and we've found that we're a surprisingly great painting team!
• While we use the artist's inspiration to come up with a piece, I always try to direct Mom to one of her own memories to create our artwork. I've been surprised by how much we've drawn on recent trips to identify a memory to form the landscapes and settings of our artwork.  We found ourselves painting a landscape from Maine one week, while another we focused on re-creating a shot of Charlie and Mom's kayaking expedition last year in the Everglades. (And of course, there was a basketball-themed piece - because we were taking the class in March, after all.)
• It's been a joy to talk with Mom and others in the class about the art they're creating and where it comes from. There's really not a way to articulate this without seeming trite, but it's been very meaningful to observe all participants (caregivers included) talk about what led them to create their piece of art and where it comes from inside of our experiences. Sometimes our artwork reflects a longtime hobby or important life event, while other times we're just thinking about what we ate for breakfast or trying to recreate from the artist's inspiration. But all of the artwork has grown out of a place of meaning and was catalyzed by a memory from participants -- and that has been such a fun experience to observe.

I just wanted to share about this program, to take a moment to reflect on what a joy it has been. Also, I wanted to brag on my Momma. I am proud of how she continues to try out new things -- especially research studies -- and particularly in light of the reality that much of what is familiar and known is slipping away. 

If you are in the Lexington area and would like to see some of the fantastic works of art that Mom and others have made, swing by the UK School of Arts and Visual Studies (236 Bolivar Street, Lexington, KY) anytime between Tuesday, April 12th and Sunday, April 17th. The exhibit is call "Hidden Wonders" and will be featured on the second floor, toward the back of the building.

{hold}

The most meaningful book I've read this year has been When Breath Becomes Air, written by Paul Kalanithi - a neurosurgeon who wrote about his experience battling Stage IV lung cancer.

While supporting a family member diagnosed with malignant cancer is different than my mother's fight against Alzheimer's, a passage written by his wife in the epilogue really jumped out to me. It reminded me of how I have been grateful, both for my community over the past three years and for how my marriage with Charlie has been fortified in unexpected ways.

And yet we did feel lucky, grateful - for family, for community, for opportunity, for our daughter, for having risen to meet each other at a time when absolute trust and acceptance were required. Although these last few years have been wrenching and difficult - sometimes almost impossible - they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love. (--Lucy Kalanithi, p.219)