{hold: lead parenting and how we parent with our mobile devices}

I just got back from a trip to London (which was preceded by a trip to Maine with my Mom) leaving my husband to manage the house and hang out with Asher for two whole weeks without me! It's been a busy September, and so seeing Anne Marie Slaughter's pieces/discussion surrounding her newest book release and then today, reading her husband's piece on fathers as lead parents was a breath of fresh air. It was a reminder of the greatness (and importance) of the tag-team/partnership Charlie and I have established. It soothed my conscious, and helped me to fend off twinges of remorse over my decision to miss out on such precious time with my infant son, and the pangs of guilt that crept in on leaving so much on my husband's (already very full plate).

And then there's this really interesting piece on our cellphones and how our children perceive our constant use of these devices. I think Charlie and I have a good balance on navigating home/work life, even when we have so many demands on the 'home' plate. The greater challenge is being able to be present when our head is muddled with never-ending to-do lists when we are home, and rejecting social media's empty promises surrounding care-free escapism and the (false) creation and curation of always -beautiful and comfortable internet lives.

Why we walk: The Recap

Walk details:
Saturday, September 26th
Our group will meet in front of Sam's Hot Dogs between 9:15 and 9:30. A small ceremony is held at 9:45 and then we will walk at 10. The walk is a mile long.
We will have a cookout after at our house. All are welcome!

Why we walk:
1. We walk because of Mom.
2. We walk because of community.
3. We walk because the Alz Association is great.
4. We walk because of Asher.

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 Carrie and Stu sent me three 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 last year's walk, telling me he was keeping us in his thoughts even though he couldn't be near on walkday. 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.

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

Why we walk: Because of Asher

Our last reason why we walk is because of Asher - we walk so that he can live in an Alzheimer's-free world. And while we are walking for Asher, this post is also connected to my thoughts as his Mom and my way forward so that he can live in an Alzheimer's-less world.

I'm not sure how many of you were able to see Still Alice, but from a caregiver's perspective I thought it was an excellent (and therefore of course, hard to watch) depiction of the illnesss. They captured the difficulty of the longevity of the illness and the silent, subtle slipping away. And somehow the director managed to pack in and instill these components of the disease within a two-hour film.

Additionally, from my perspective - it was fascinating to watch the adult children in the movie try to determine whether or not to get tested for the genetic mutation connected to early-onset Alzheimer's. This is a question I wonder about, and quite often, as I figure out how to respond and fight the illness in my own way.

Do I get tested? 

What determination will that have for my future -- and for my child's future?

I think the tension lies in balancing the need to be able to move forward with one's life without feeling as though a certain path is fated, but also with wanting to be informed and knowledgeable about my health. An additional component of the 'knowledge is power' side is that there is growing evidence that Alzheimer's treatments will likely be more effective if they are given early, or can in some way be preventative.

And so, I have already resolved to get tested. I think it's important to know so that I can also get involved in research, as much of the way forward in clinical trials is for folks that are my age and predisposed to the illness, stepping forward and working with scientists and doctors to find a cure. 

However, I do want to hold this kind of perspective in my head. There is a clip in the season finale of Scrubs (yes, Scrubs! don't judge!) that was really meaningful and I've carried with me.  At the end of the show a young man is trying to determine whether or not to get tested for Huntington's disease, Throughout the episode he is grappling with the decision, and he ultimately decides to wait - because he's not ready to know; he doesn't want to have his future be defined by a grim trajectory. I totally get that -- after being a caregiver to a parent who is fighting a terrible illness, there is freedom in hope and not knowing.

My goal forward is to try and balance that perspective from the episode while still journeying through the process of testing. I want to hold both the sense of hope and newness that we have in the unknown of the future with my desire to continue to fight against Alzheimer's disease. I haven't pushed for genetic testing yet because, holymoly, when is there time for that sort of thing? But it's a goal for the upcoming year.

And it's a goal because I need to know. I have an absolutely incredible son, Asher. He has lit up all of the spaces of our home and hearts.  Three days ago, Mom was outside working in the back yard and Asher stood at the door - banging and laughing responsively as Mom made silly faces. And THEN he exclaimed 'YaYa!' and my cup was completely full and overflowing. We're in this thrilling phrase where Asher is absorbing and learning so many new things daily - it makes (almost*) every situation golden. 

And so my goal for this year is to commit to knowing, for Asher. And this Saturday we walk, to support research to end Alzheimer's. We walk for Mom, but we also walk for Asher. I hope you'll join us.

Thanks for giving me a space to share about these things over the past month. Grateful for you!

(*I will not overly romanticize the whole parenting thing. Explosive poopy diapers and such are excluded from the 'all things golden' speak.)  

Also, Scrubs clip here - although I can't actually find the clip of the conversation between the caregiver and JD. Only JD's reflections after learning about the caregiver's decision not to get tested.

Why we walk: Because the Alzheimer's Association is a lifeline

{at the Portland Head Lighthouse, as we are currently on vacation in Maine!}

Confession: I really hate fundraising and asking for support. It just isn't my forte, no matter how much I believe in the cause. Additionally, I've worked at multiple non-profits throughout my career, and while I have the utmost respect for the important work and dedicated people at these orgs, it has led me to have direct observations of some of the flaws that can undergird the structure of many non-profits. (Kind of makes me think of that quote about not watching directly about how sausages/legislation are made. Sometimes non-profit works feel similar.)

So, all of that to say, while I do feel like a reluctant advocate and fundraiser, every year here Mom and I speak up in September, going headlong into the interwebs, trying to raise a steady voice about this cause. And we also, wholeheartedly believe in the important work of the Alzheimer's Association.

We walk because we believe in all of the good work of the Alzheimer's association. We have experienced it firsthand. The Alzheimer's association runs support groups for individuals with early-onset Alzheimer's. Mom participated in a group in the Spring of 2013, and it was a space for her to talk openly (without me or other caregivers) about the frustrations and challenges of the illness. She continues to go to monthly lunches organized as a continuation/outlet for participants of that group.

Additionally, the Alzheimer's Association connected us with the Sanders Brown Center on aging where Mom is now a participant in a clinical trial. Mom's participation in this research not only helps her receive medication which may delay the progression of the illness, but it also allows her to commit to research in a tangible way, through her annual participation in a memory clinic in addition to the clinical trial. We won't find a cure for the disease without connecting individuals (and their children, more on that next week...) to research programs, and the Alzheimer's Association is the primary agent for connecting families to opportunities across the country.

Lastly, the Alzheimer's Association doesn't just help individuals with Alzheimer's; it provides services to the entire family. When Mom was initially diagnosed, I was able to attend an all-day workshop which provided helpful information -- including a medical presentation from a leading neurologist in Lexington, a session on legal rights and suggested next steps from a respected lawyer in town, and a session on caregiving from an experienced social worker. This was a huge help when I was trying to navigate those first days and determine my initial steps.

Presently, I've just started participating in a support group for caregivers under the age of forty. Since early-onset is more of a rarity (and even still, many primary caregivers are older spouses), it's been hard for me to attend support groups and find individuals who can connect with the demands that come with caregiving in my season of life. Thankfully, the Alzheimer's Association has heard this feedback from folks like me across the country, and (thanks to an initiation/support from Hilarity for Charity) has started up Google+ support groups for young caregivers. Although they have just started, I'm immensely grateful for the space thy have created for me to begin connecting with others who are fighting similar beasts.

Tangent --> but did you catch the interview between Stephen Colbert and Joe Biden last week? If not, I highly recommend watching. I thought it was so generous of Vice President Biden to both acknowledge the gratitude he had for his family and friends who rallied around him, while also being cognizant of others suffering and potentially lacking in similar support. That theme - that we need to give thanks for our community, while also ensuring that we can help others in need have access to these life-savers when they are barely able to keep their head above the swell, is why we walk. The Alzheimer's Association is a great organization, one that has been incredibly helpful to us. But I imagine there are others with less support to which they are an absolute necessity, and I am proud to work alongside Mom to raise awareness and funding for such an important organization. I hope you'll join us.

Reason #3: We walk because the Alzheimer's Association gives families and caregivers essential support in a time of need.

Why we walk: Because of Community

When Mom and I started talking about reasons why we walk, this one didn't come up as naturally. I think it feels a bit selfish to come out so quickly and say something like "we walk because it shows us that people care about us." The undertones of this statement could have shades of selfishness and seem attention-seeking. It's hard in the age of social media and self-promotion to be so bold as to say 'we need people to pay attention to us' or rally around a cause in a way that isn't trite or insincere.

But to fail to be honest about our need for the presence of our community (I think to the biblical phrase 'brotherhood and sisterhood of saints') would be disingenuous. Mom, Charlie, Corey, Asher, and I are in constant need of community - and walk day is just one of these many instances.

When folks leave comments of encouragement, send emails in support, make a donation, or come out to walk with us - we are genuinely lifted and propelled forward into our work. Things like honesty and vulnerability are really hard to speak about in a large-scale context, and Alzheimer's disease is a great exposer of vulnerability. So, when folks come alongside us through this journey each September and remind us that they can stare the impact of Alzheimer's straight-on without becoming stymied by inaction, we feel emboldened. When you respond by raising awareness and funding in the hopes of finding a cure, we feel empowered.

 Additionally, longevity and isolation are some of the terrible monsters that rear their heads when facing chronic illness. As humans it is hard to keep something on the forefront of our mind for more than a few weeks. So, I think we tend to the immediacy of a friend's loss or passing illness well - we can bring soup or a casserole, send a card, and lift up quick prayers. Unfortunately, we really stink at 'the art of presence' (myself included here). It's easy to be a 'firefighter', but much harder to be a 'builder.' However, from our experience we crave the support of folks who can sustain - provide ongoing support, even in small, simple ways.

And so the walk allows Mom and I to speak every September - to remind folks of our ongoing need for support, and to be amazed and humbled by how generously our community responds. Know that the ability to speak is a lifeline for us. As the gaps and spaces widen for Mom, she can still come forward and speak boldly and energetically even when she can't find words. You give her space in her pauses as you watch our videos. And when you stand with us on walk day you remind her that while the growing voids are awful (and nothing can make that not suck) that her friends and family are willing to stand within the spaces. We will try to fill voids as much as we can with our presence, love, and understanding. We will still be here even when she struggles to engage and respond to our presence. We won't fade away along with her memories, even though the nature of our relationship may have to change.

And lastly - you are a lifeline to me (and Charlie). I've written in the past about how vulnerability and gratitude through this illness have bound me deeply to community and kept me tethered to sanity during the really hard points of the past years. But it needs to be said again - I could not do this on a daily basis without you. And the walk is just one small part of that - this year, it's connected me with folks at my church who have similar stories and made space for conversations with longtime friends about recent challenges. Last year, a friend sent me such a thoughtful email in response that I have read over it and thought of it on a regular basis, especially on the days when I've felt particularly lonely.

Most importantly, walk day reminds us of our community - but while the palpable encouragement we

derive from folks walking alongside us, holding hands and linking arms with us on September 26th buoys our spirits - it is just one small part of the story of how you help us. The story of your response to Mom's illness is full of silent, generous gifts -- weekly casseroles from my aunt's friends when we hit a particularly trying couple of months, weekly meals from my aunt and grandparents - and countless other times where they have sacrificed their weekends and time to allow Charlie and I to get away. Out of town friends have made a point to get to Lexington to come visit, just because they know quality time and their friendship are life-giving to Charlie and I. And Mom's friends are legion - constantly inviting her to meals and events. Her social calendar is as full as ever, and it reminds Mom that she is loved and keeps her busy and excited about the days ahead.

And so, point two:
2. We walk because of community.

We walk because of you all. Thank you for coming alongside us through this journey.

Lord, have mercy

The news can often be grim, and with the rise of ISIS and growing economic disparity, the past year has been full of particularly bleak coverage. At times I think we all have, as a coping mechanism, and because we are so often paralyzed by the complexities of these issues, had to look away.

However, the story, the picture, of the Syrian boys lost at sea yesterday left me sitting tearfully, angrily, helplessly silent in bed last night.

We've been hearing stories for years about ships capsizing in the Mediterranean and have been guilty of looking the other way. These aren't our shores. This is a European crisis.

But, is it really? In the era of globalization, when we are all so interconnected, there is a cost for looking away. One of my favorite quotes is

It's not acceptable for those of us fortunate enough to have ties to universities and other "resource-rich" institutions to throw up our hands and bemoan the place-to-place complexity.

And so I am reminding myself that I have to be involved. Maybe all I can do is give to UNHCR or IRC. Or maybe I can work with my church to sponsor a refugee family. (Random aside: *Did you know that the US takes in 90,000 refugees annually. Germany is commiting to accept 500,000 asylum seekers annually. And there are 4 million displaced Syrians, not to mention the countless Iraqi, Eritrean, Sudanese, Congolese and many others who are currently fleeing persecution.) 

It feels a bit contradictory that this old blog is called "something silly in" as lately I've been writing about mostly heavyboots things. But, I guess I am reminded that we need to fully experience the hard things in order to have a true appreciation of silliness.

Today I'm thinking back to a crisp, autumn evening in Baltimore. Our narrow, Baltimore row house was full as we gathered round the table with an Iraqi family we had befriended through my role as a casework intern at IRC. Charlie was showing the children how to make origami swans, and at one point, sweet, four-year-old Daniah exclaimed "Charlie is magic!" to her parents in Arabic. They translated for us through spurts of laughter.

Caring for refugees has always been something I've connected with, and so I want to get involved with refugee families again. I hope I can write soon about this kind of silliness and friendship in our current season of life here in Kentucky.

Why we walk: Because of Mom.

In order to gear up for the Walk to End Alzheimer’s Mom and I are posting videos about why we walk. I've talked with Mom and through our conversations mapped out four reasons that motivate us to walk. In addition to those videos I wanted to reflect more on our reasons for walking. So, each week I am going to include a blog post where I can let out a bit more of what's been muddying up my headspace and share a bit more of my heart for our "reasons." 

So, reason 1:

1. We walk because of Mom.

I think, when we start to care for big, overarching causes we often lose sight of the individual. But my Mom is a person -- a beautiful, intelligent, life-giving human, and Alzheimer’s is slowly robbing her of what makes us most human – the memory of our experiences.

When we recorded our video, Mom spoke specifically to the loss of her autonomy in her ability to drive. She feels confined because she can’t go places, and of course she does.  Can you imagine working all of your life to get to that sweet point of retirement, only to have your years of friendship with you adult children, travel, deepening friendships, and raising grandchildren diminished because you are constrained in when you can go places and how you can get there?  It sucks beyond measure or articulation.

Additionally, I talked about (and you likely observed in the video) how Mom is struggling now to articulate ideas and find words. A conversation that we used to be able to have in twenty seconds now takes two to three minutes, and in our fast paced culture we are so busy zipping off from one thing to the next that we forget to have patience to slow down so that Mom can find her words. I am most guilty of this – sometimes I am so rushed that I just skip a conversation altogether. For Mom this has to amplify the isolation already growing between the gaps. I try to be mindful and take time. But it is hard.

One of my all-time, favorite TV moments is when Stephen Colbert takes a few minutes on his show, The Colbert Report, to talk about his mother after she passed away. This is the segment I find myself revisiting, time and again: 

"I know that it may sound greedy to want more days with a person who lived so long," said Stephen, breaking character to eulogize his mother and fighting back tears. "But the fact that my mother was 92 does not diminish, it only magnifies the enormity of the room whose door has now quietly shut."

I believe one of the reasons why Alzheimer’s research goes unfunded and the disease goes unmentioned in discussions on the greatest medical challenges of our time is that we consider significant memory loss to be a normal side effect of old-age. Our sharpness will inevitably dull, our memories will blur, and so Alzheimer’s is just an end of the normal continuum in the aging process. However, Colbert's segment reminds us that no daughter or son is any less consoled to watch their parent suffer. No circumstances diminish the challenges as parents fight off any illness, or ultimately succumb and pass away. The fact that they were older or led a full life does not necessarily lessen the pain or narrow the gaps in our hearts as we watch as innocent bystanders in the face of suffering. 

The horrors of Alzheimer’s are brazen when we observe them in the cases of those with early-onset, like my mom. But one thing that caring for my Mom has taught me is that when illness and death strike those who are older, it is still incredibly painful and challenging for their community and loved ones, no matter their age.

And so -- the enormity of what Alzheimer’s takes from us spans the whole of humanity, but I also experience this in the specific and exact ways it is robbing my mother of her memories, experiences, and ability to cherish her "golden years." I see it when her eyes well up in panic because misplacing her purse isn't just a mundane annoyance, but a slap-in-the-face reminder of how hard it is to keep up with the demands of a routine day when amyloid plaques are gumming up neural connections. I feel the pang of the loss when my mom stutters over words as she tries to read to my infant son. It pervades our days in a very direct way, and I am not even the one who has to suffer directly from the illness.

And so, we walk because of how Alzheimer's has directly affected Mom. 
We walk because of Mom. More next week...