My Caregiver Wish List

This year, my children’s Christmas lists were, like my children, very different from each other. My daughter’s list was detailed, with a key explaining which items needed to be ordered online and which could be purchased in town. She started the list with a lovely statement about her gratitude to us as parents and helpfully provided direct links to products to save me time (and make sure I ordered the right thing).

My son? I’m still waiting for any kind of list. There have been a few verbal requests, and he has put two items in my Amazon cart, but that’s it.

Caregiving Challenges

Me? If I were to get an opportunity to tell Santa what I really want, my request would probably focus on what I really need as a caregiver:

A Game Plan

When dad moved in with us at the end of May 2014, everything happened rapidly. He had been living by himself (with significant help from us in the form of multiple visits daily to ensure medication compliance, etc.), he sustained a subdural hematoma from a fall and Wayne felt it was critical for him to live with us. He threatened to sign himself out of the rehab hospital, and next thing we knew it he was living with us.

Santa, it’s a little late for us, but if you run across any families who may be on the verge of taking on the task of caregiving, tell them to pour some hot cocoa and get on the same page. They won’t regret it. Caregiving works best when it is a joint family decision, not a situation you back into by necessity.

A Housekeeper

As I have written about here, and as anyone who steps foot in my house knows, housekeeping is not my forte. I am not proud of this, and am always trying to improve, but it doesn’t get any easier when you add the component of an elderly relative with self care challenges. In addition, we are almost always home; the wear and tear on the house is brutal.

If you really want to delight me, Santa, tuck a housekeeper or two in that sleigh and deploy them weekly (or even monthly), at least to the one bathroom in the house none of us can bear to go into anymore.

An Elf Who Specializes in Home Mobility Adaptations

There are so many of our home components that need to be adapted for Dad to be safer (and us to have more peace of mind): the toilet seat needs to be raised, the throw rugs need to be removed (because they are tripping hazards), there need to be grab bars multiple places in the bathroom. We need a shower chair. Some of these things are easy to do (and affordable enough). Some are “bigger” modifications. But they all take time and planning.

Santa, a grab bar may not be very festive but the prospect of peace of mind from less worry of falls is pretty darn merry.

A Train of Thought

While a trip on the Polar Express sounds charming, what I really need this year is for my own personal train of thought to make it from the home station to the destination depot without multiple unplanned detours along the way. Without a sprint to the bathroom when I hear the sounds I’ve come to know as impending instability. Without a request to turn the tv up (again).

Santa, all I want for Christmas is to to be able to remember where I put the ………

The Ability to Go to the Bathroom Worry-Free

You know how infants always seem to get fussy when you sit down to eat? There’s a similar principle with the elderly: close the bathroom door to do your business and the “get up too fast/get dizzy/find yourself at risk of falling” cycle activates. It’s UNCANNY. I’m not sure what the cumulative effects are of always being worried, but I know they aren’t health boosters.

Four minutes, Santa. Four. Worry. Free. Minutes so I don’t have to ho ho hold it.

Infinite Copies of the Meds List

I have written the Dad’s meds list by hand approximately 2,435 times in 2.5 years. Okay, maybe not that many but it feels like it! I do know that there are apps for this kind of thing, but I haven’t started using one yet. You would think, in this era of Electronic Health Information, that this would all be in the cloud. Right? I can attest that the last thing on your mind when you arrive at the ER after a fall is having a hard copy of the meds list.

In addition to these infinite meds list copies, Santa, they need to magically revise themselves when something changes. While we’re at it, this magical nothing-critical-is-ever-forgotten world will also make his insurance cards, social security card, and ID card magically appear when needed, rather than being at home where they are not helping anyone.

A Visit by the Mobile DMV

Spoiler: There isn’t a mobile DMV. But this is my list and Santa’s my benevolent all-giving fantasy guy right now so let me go with it. It didn’t seem like a big deal when Dad’s driver’s license expired, but then there was the document we needed to have notarized, with an ID for proof of identity, there was voting (he voted absentee but in general, it could have been requested at the polls), and there will be other life events.

Santa, if there isn’t a mobile DMV, can you and the elves come over and help with the arduous process of getting him dressed, to the car safely, out of the car at the DMV, tolerating the line, understanding the instructions he is being given in order to have a valid State of Florida ID. Please?

Unlimited Legal Assistance

Growing old, even if your life is relatively uncomplicated, brings with it the need to get legal affairs in order. Power of attorney, a medical representative, DNR orders (if you choose to have a DNR order), a will, and a host of other legal matters that need to be put in place. That doesn’t happen for free, and it is not always straightforward.

Santa, I imagine in today’s litigious society your attorneys may be busy putting warning labels on toys and all, but aren’t they free about ten months out of the year? Could they help a caregiver out? (And while we’re at it, an accountant as a stocking stuffer would be a plus.)

More Health Professionals Who Care About The Family

As I mentioned in this post, Dr. Daniel Bower, an oral surgeon who saw dad when he had a dental emergency, is the only dentist, doctor, nurse, or other health professional in the past 2.5 years who has looked at Wayne and me and said, “and how are you doing?” It’s not that we would have flooded him with the whole story or a litany of our challenges, but honestly the fact that he acknowledged that caregiving is hard on the family was big. 

While I could cite statistic after statistic confirming that caregivers experience stress, I know you have toys to make and flight plans to file, Santa. Just remind medical professionals to take a moment for empathy with caregiving families, okay?

Agencies and People Who Tell it Like it Is

One of the biggest frustrations of caregiving is the fact that well-meaning people tell you things that end up not being true or relevant to your situation. Relatively early on, someone with a home health care agency recommended another agency that, according to them, “will help you fill out the Aid in Attendance paperwork and file it — it’s just something they do.”

While the agency did help us with the paper work (which was denied after a months-long wait), when we eventually ended up at the Leon County Veterans’ Affairs Office, they said “why didn’t you come to us first?” We didn’t know to do that. The original agency we were referred to does help families fill out the paperwork, but judging by all the emails we still get from them offering to “manage our wealth,” it’s clear they had an ulterior motive.

I could give other examples but they are all the same essential model: someone tells you something they think will be helpful and you end up chasing your tail.

It also takes a lot of digging to find some incredible (and often free or low-cost) resources. We finally got hooked up with the free in-home respite from the Alzheimers Project here in Tallahassee, which uses Americorps volunteers.

Okay Santa, this is a lot to ask but we could sure use more “nice” information givers (who give the right info) than “naughty” (who mean well but send us down the wrong path). Our family’s bottom line and peace of mind are riding on this.

Patience

Dad’s cognitive issues are minor in comparison to others I’ve heard about. I know I have high expectations of myself, but I am saddened, often, about the fact that I find patience in short supply. It’s not his fault I didn’t plan ahead to be prepared to leave for a doctor’s appointment, not his fault that whatever happened in his brain stole his empathy, that it doesn’t do any good to say, “If I could just send out these four tweets, I can answer your question.”

I want patience, Santa, and I want it now! 

Grace for the Big Moments

The last 2.5 years have had their hurdles: the dental emergency, the head and neck cancer diagnosis with the related 35 radiation visits, 53 hours without electricity (or tv, his one constant) during the Hurricane Hermine aftermath.

The medical parts of Dad’s situation have compromised his privacy and eroded his dignity. More than the physical procedures, I will come away from this period of caregiving with a few significant moments embedded in my brain. I’m grateful for medical professionals who undoubtedly studied for years and learned complicated math, science, and anatomy, but for whom the real test is looking someone in the eyes who may or may not completely understand and saying, “this may be cancer. This could be very threatening to your survival.” Dr. Philip Sharp and Dr. Joseph Soto have both passed that test with flying colors.

I know you can’t take away those life altering moments, Santa, and I know that it is a privilege and duty curated out of love to be present for them. While hoping for a season of magic for children worldwide, I also ask for an extra helping of grace to be the caregiver Dad deserves.

Caregiving Challenges

National Family Caregivers Month #BeKindToCaregivers

Back in the spring, when my father-in-law was at the Tallahassee Memorial Cancer Center every day for weeks as he got radiation treatment for throat cancer, one little tiny “treat” I looked forward to each day was taking a puffy peppermint candy from one of the ubiquitous candy containers placed strategically throughout the center. I always took it a little surreptitiously, grabbing it one-handed and somehow slipping it out of the wrapper and into my mouth while simultaneously pushing a wheelchair (because if there’s anything mothers of young children and caregivers of elderly people learn, it’s how to do multiple tasks despite highly occupied hands!). Such a small thing, but a tiny moment in each trip which felt like “mine.”

Who Is Doing All This Caregiving?

There are 40 million unpaid caregivers in the U.S. Many caregivers, like me, are boomer women, often sandwiched between the needs of their parents and their own kids. A popular misconception is that caregivers are paid medical professionals, providing full-time care to someone in need of daily help, when in reality, most caregivers are family members or friends who are also working and managing their own families at the same time.

For many, the caregiving role starts with simple things like scheduling a doctor’s visit or helping with daily errands, but gradually expands over time, until it becomes a major commitment in their lives. For our family, everything changed in June 2014 when my father-in-law was hospitalized for a subdural hematoma which occurred when he fell. Returning to living alone (even with the amount of support we had been providing with daily visits) was out of the question.

This video describes some of the challenges faced by unpaid family caregivers:

Almost three in ten people who are caring for someone say their life has changed with caregiving, oftentimes for the negative. More than one in five say their weight, their exercise, or their social life has/have suffered.  Emotionally, one in five say they are generally unhappier and one in three say they feel sad or depressed.  That’s why AARP created a community where caregivers can connect with experts and other caregivers and can find information and tools to take even better care of the person who once took care of them.

Candid disclosure: I participated in the National Family Caregivers campaign last year, promoted the benefits of the AARP Community, and wrote how I would be “digging in.” I have not dug in. One of the biggest challenges of this caregiver life, to me, is the fact that there are lots of great resources out there, but it takes time to track them down and research them. It feels like a catch-22.

How You Can Help

There is something that you can do during National Family Caregivers month to support a caregiver in your life. On behalf of the Ad Council and AARP I am asking for your support in helping to raise awareness of the Caregiver Assistance campaign through the Random Acts of Kindness for Caregivers initiative which aims to recognize and support unpaid caregivers in the U.S. The initiative, which is kicking off this month, encourages all Americans to perform an unexpected “Random Act of Kindness” for a caregiver. By starting a nationwide movement, we’ll raise awareness of caregiving and caregivers while at the same time reaching caregivers directly—helping to alleviate some of their daily stresses and reward them for their ongoing support.

I’m going to share what I did, because if it brightens the recipients’ days even a quarter of how it brightened mine to do it, then brightness will abound!!!

One Idea

As I tried to decide what to do, several ideas floated through my mind. I thought about my fellow caregivers I passed going to and from treatment at the Tallahassee Memorial Cancer Center, about how I could possibly sit in the parking lot, wait until they had taken their patient in, then sneak a note and small gift onto their car. But, being a caregiver myself, I have to be a little strategic about when I can leave the house and I wasn’t sure how much time all that stalking would take (I’m also really bad at being sneaky!).

I contacted our local Elder Day Stay (candid disclosure #2: contacting Elder Day Stay to explore it as an option for my situation has been on my list too, one of those “when can I find time to do this?” things so I was killing two birds with one email stone.) Vicky from Elder Day Stay was such a delight to exchange ideas with. After thinking through the kinds of things my experience as a caregiver led me to believe they would like, I chose these items to include in goodie bags to be distributed to caregivers at pickup from Elder Day Stay:

Recognizing Family Caregivers

A Sharpie because a) I love Sharpies and b) a Sharpie was a great fit for the verse I had planned. (It turns out the caregivers at Elder Day Stay have to mark the participants’ belongings with Sharpie so this was a win-win for all!).

Recognizing Family Caregivers

A fragrant hand sanitizer because one of the universal truths of caregiving appears to be: bodily functions will always be involved. I want them to at least have a sweet smell to mitigate the less fragrant aromas. I love the “give thanks” sentiment! Once Cam and Shanelle at the Governor’s Square Bath and Body Works learned what I was doing, they gave me 30 bags and 30 pre-cut ribbons to use for these treats, as well as fantastic attitudes! I am grateful.

Recognizing Family Caregivers

A chocolate bar because a) these caregivers deserve a treat and b) I needed a bar of some kind to fit in with the verse I had planned. I thought about getting something healthy (protein bar, fiber, blah blah blah) however I wanted these people to have a small but decadent treat!

I wrapped it all up with this verse, with information about the AARP Caregiver Support site included:

Recognizing Family Caregivers

Here’s the final:

Recognizing Family Caregivers

Recognizing Family Caregivers

Whose Day Can YOU Make?

Is there someone in your life or community who is serving as a caregiver that you can do something nice for? It doesn’t have to be complicated or expensive, just a small gesture that makes a caregiver’s life a little easier.

After you choose (and do!) your random act of kindness for a caregiver, please share your story with AARP. If you submit a 150 word or less summary of how you made a caregiver feel special along with a photo, you’ll be entered to win a cash prize from a $10,000 pot. (Note: the contest lasts through March 15, 2016, but Thanksgiving would be the perfect time to get the random act of kindness ball rolling!).

You could make the tiny bit of “me time” difference those Cancer Center mints provided me!

Recognizing Family Caregivers

Recognizing Family Caregivers

This is a sponsored post on behalf of Element Associates and Midlife Boulevard.

The Cancer Color of October is … (2015 Version)

NOTE: This is an update of a post I originally wrote in October 2014.

The Cancer Color of October is … not always PINK.

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It is October, and pink predominates pretty much everything because October is Breast Cancer Awareness Month. Breast Cancer Awareness Month is important to me because I am the daughter of a survivor and have seen countless friends, acquaintances, and fellow humans (women and men) be diagnosed with this disease. Some are (blessedly) still alive and thriving; others have passed away. As a woman, I face a 1:8 chance of being diagnosed with breast cancer at some point in my life. Therefore, for selfish reasons research should be supported. However not all “pink” is effective “pink,” and there are many other causes out there of which we need to be aware and for which we need to take action.

When Pink Makes Me See Red

I am wearing a lot of pink this month, and having been a multiple-year captain at Making Strides Against Breast Cancer, I am in full support of many efforts to raise awareness of breast cancer and fundraise toward support and research. Here in Tallahassee, October 2015 is fully in pink bloom, with many of our city’s leaders and brightest lights leading the way. However, it is important to know that not every product robed in pink does much good and to make well-educated purchasing decisions.

When Pink Has Gray Areas

It is also important to respect the connotations all that pink carries for people currently dealing with breast cancer, either for themselves or a relative. Sarah Thebarge writes eloquently of the evolution of her feelings about pink as a color representing breast cancer here.  She also wrote a superbly useful list of 31 Ways to Help a Friend Who Has Breast Cancer (visit it here) which goes beyond wearing pink.

But Paula You Said This Post Wasn’t Just About Breast Cancer!

It’s not. I want to encourage you to add some “blue” to your October observances (I know, now it’s feeling baby shower-ish up in here, isn’t it?). Prostate cancer is the second leading cause of cancer deaths in the US. It has affected many men I know.

Ed Randall’s Fans for the Cure seeks to “save lives by increasing awareness of prostate cancer and the life-saving value of early detection while providing education and information about cutting-edge research to reduce risk, detect, and treat prostate cancer.”

Fans for the Cure aims to encourage all men over 40 to consult with their doctors and schedule their prostate exams and PSA blood tests today because early detection saves lives.

See Tom Foley, Tampa Bay Rays Bench Coach, discuss prostate cancer and his father’s experience here:

Fans for the Cure envisions a world where all men are aware of their risk and know how to prevent prostate cancer. (Early detection can involve a simple blood test. Read more about detection options here or visit this site to donate.)

Fans for the Cure was present at nearly 175 minor-league games this baseball season. At these games, Fans for the Cure partners with local hospitals to offer prostate cancer screening and provides information. I hope to make one of these games next year.

Got it: PINK, BLUE, and … GRAY?

I had this “pink and blue” post planned for weeks before I wrote the original post in 2014. One individual’s story presented itself to me via friends, though, and it was important to add it. Andy Nichols was the brother-in-law of a friend (as she puts it “the brother of my heart.”). Andy had an aggressive glioblastoma brain tumor, which is in the same family of brain tumors as the one my friend Dustin had. When I learned that Poplar Head Baptist Church would be holding a 5K race in Blountstown on October 11, 2014, in Andy’s honor (to help with expenses not covered by insurance as well as raise awareness), and that his friends wanted help getting the word out and generating as much participation as possible, I knew in a heartbeat that I would be heading west that day.

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Tiffany, Debbie, Paula O’Neill and I had such a fun day at the fun for Andy!

Andy and his family chose the "I have hope" phrase to symbolize hope for a cure for ALL forms of cancer, not only brain cancer.

Andy and his family chose the “I have hope” phrase to symbolize hope for a cure for ALL forms of cancer, not only brain cancer.

NOTE: Andy passed away from complications caused by his brain cancer. He is not forgotten, even by those who did not technically know him.

So Many Causes … Where Do I Go From Here?

I wish I knew! I have only scratched the surface, with a bias toward the fact that it’s October, that my mom (pictured in this post with a pink bird of hope) is a breast cancer survivor, that Ed Randall is doing so much across the country to encourage men to get screened for prostate cancer, and that Andy and his family needed (and got) our support on October 11. My friend Mary Jane, a multiple myeloma survivor, organized a team for the NYC Half Marathon in March via Team in Training and our team ROCKED THAT RACE. As to “where do I go from here?”

cancer colors

This graphic is from www.crochetforcancer.org.

In a sea of choices, the best recommendation I can make is the same one I would make if you were drowning in a literal sea: clear your head, get your bearings, look for the surface, orient yourself toward the shore, and take action. Your action may be donating funds, running in a race, running for a cause (hello, Charity Miles and Stand Up 2 Cancer!), or simply telling someone who has cancer “I am here for you” or asking their family what you can do to help.

Whatever you choose, don’t for a minute let yourself believe that your contribution is too small or won’t matter.

My mom, Ed Randall, Andy, and Mary Jane would surely feel differently …

Notes from Sub-Waiting

Judging by the SIX emojis I used when I checked in to the TMH Cancer Center (I am calling it “The Cancer Center” in this blog) yesterday, I was happy that it would be our last day there. My father-in-law was completing his 35-treatment regimen of radiation therapy for neck cancer. That’s 35 days almost in a row, excluding weekends and the two-day “break” Dr. Sharp gave him before he began the last week.

Notes from Sub-Waiting

I had been in a radiation waiting room before, when I was one of the people asked by my friend and former boss to accompany her when she was having radiation treatments for a soft tissue cancer ten years ago. At the time, I recall the professional yet somewhat crowded setting on the first floor of TMH, the limited parking, how kind the staff members were, how kind the patients were to each other, and most predominantly, the visual I would never be able to shake of the permanent tattoo on her skin where the radiation would be aimed, and how for those moments of making sure the treatment was administered accurately, her body was a mass of skin, tissue, and bone to be “done something to” — everything else about her life: her accomplishments, her failures, the people and things she loved and hated, her hopes — were of no importance.

When Dad was diagnosed with neck cancer and we were referred to The Cancer Center, the process began with an intake session, paperwork (of course!), and an orientation to what lay ahead.

Immediately upon walking in to The Cancer Center, it was clear that a lot had changed in ten years. The center, located at 1775 Healing Place, is a standalone building, with plentiful parking (yay!) and a lovely healing garden (I never had a chance to spend time there, but each day’s quick peek as I entered the building gave me a little glimpse of beauty.) There were always plentiful wheelchairs (and we all know how I feel about a scarcity of wheelchairs!). The receptionist always greeted patients by name. En route to the radiation area, a caretaker passes two full candy dishes as well as smiling volunteers and staff.

Although there are kind medical professionals other places, I am positive the cream of the crop works here. 

There is a dressing area where the patient can go to change into a gown before heading in to “sub-waiting,” where they wait for their turn to be treated. (Because of the location of his tumor, Dad was excused from the gown-changing routine early on. No complaints from me about that!)

The actual process of receiving the radiation treatment is quite speedy. Still, 35 days of sitting in the same room with other people who are in the middle of being treated for cancer is not like 35 days of sitting in a car service waiting room or even in a general doctor’s waiting room until being called for a check-up. It’s the kind of 35 days that makes a person take notes …

Notes from Sub-Waiting

Connections Matter

I missed Day 1 of radiation treatment because I was on my way back from my trip to New York, but on my Day 1, I nodded politely to the fellow patients/family members, but did not chat much. It was all new to me. By Day 35, I looked forward to seeing people I had come to know by name and was sad when our schedules resulted in missing each other. As “veterans,” we welcomed the people just starting their treatment plans and helped them feel comfortable.

Connections were established, and these people came to matter to me (and us to them).

Hospital Gowns Equalize

People who would dress completely different from each other outside of the cancer center all clothed themselves in the required hospital gown … and socks. Although Dad didn’t have to change, he did have to take off his outer shirt and sit there in a t-shirt. I wonder if I would have made different assumptions about these people if I had seen them in their street clothes. I hope not, but these patients rocked those gowns more confidently than Rihanna at the Met Gala. And socks-as-footwear has to be more comfortable (and affordable) than Manolo Blahniks, right?

Will the puzzle get done?

For most of the 35 days, there was a puzzle in sub-waiting for people to work on while they sub-waited. It was an autumnal foliage/church scene with an infinite number of shades of burgundy, gold, and rust. I never saw anyone working on it (my husband said he did (??)). I sort of messed with it one day but got distracted by the TV and my desire to finish reading Through Rose Colored Glasses: A Marathon from Fear to Love by Donna Deegan (which seemed an appropriate choice of reading considering the environment!).

Notes from Sub-Waiting

The day I walked in and the puzzle was gone, however, I was sad! Did it get finished? Did someone just get annoyed with the snail’s pace at which it was getting completed? What happened to the puzzle?!

Notes from Sub-Waiting

We Had Our Laughs

The fact that these people are dealing with cancer doesn’t mean it’s all anxiety and resigned faces in sub-waiting. As we got to know each other, we had our share of laughs. From the caretaker who said she used to be a stand-up comedian, with her “Help I’m standing and I can’t sit down” joke, to the array of unusual things you see on daytime TV, to Dad saying, “Booze? Yeah I like that” when the dietitian asked if he liked Boost.

We may not have chosen to be in sub-waiting but we chose to find reasons to smile.

What Will Happen?

Despite making connections and finding humor in our situations, you still don’t know why anyone is there specifically, nor is it appropriate to talk about it. While none of us needed to know the reasons the others were there, curiosity is human nature. Besides the curiosity about the reasons people were there, I want (futilely, I know) to know how their next chapters go. Will their time in sub-waiting end up being a footnote in their life story or is it a stop on the way to more treatments, more challenging health issues, less years in their lives?

Certificate

Did you know you get a certificate when you complete your radiation treatment plan? AND as a bonus, your radiation mask. (Side note: check out this art made from discarded radiation masks.)

With the exception of a follow-up visit in three months, we are done. Some other patient will enter The Cancer Center Monday for the start of their treatment plan. Their caretaker will probably be as clueless as I was, having to ask where the dressing room is, how to get back out to the parking lot, what the phone number is for the treatment room.

Of course I am happy to be through with the daily trips that exhausted Dad and gobbled up time. But I am unhappy to leave behind so many lovely fellow patients, supportive physicians and staff, and unfinished stories.

Admittedly, I found this image on the internet and never saw this wording as I was leaving the building, but it is my wish for all of the fellow sub-waiting patients that they, too, “go in peace.”

Notes from Sub-Waiting

Invisible No Longer (A Book Review)

I participated in a campaign on behalf of Mom Central Consulting for Jericho Books. I received a product sample to facilitate my review.”

My morning yesterday started with two “first world” traffic situations within a half hour of leaving the house. There was the motorist who tailgated me even though I was already going 50 in a 45 mile an hour zone. Then there was the motorist who threw up his hands at me because we were in a relatively unmarked lot and I was coming toward him. I was tempted to tweet my frustrations away.

Thebarge-TheInvisibleGirls-book-large-345x525

In her book, The Invisible Girls, Sarah Thebarge introduces us to two decidedly UN-First World problems and leaves the reader appalled, empathetic, hopeful, and dumbfounded. This was the first book I have been unable to put down in a long time.

In “The Invisible Girls,” Sarah encounters Hadhi, a Somali refugee with five young daughters, who had been abandoned by her husband after the family had arrived in the United States (they had fled the political instability of Somalia and spent time in a Kenyan refugee camp before an aid organization helped them fly to the United States where, according to Thebarge, “they were allowed to stay as political refugees.”)

The circumstances that brought Sarah to be on a train in Portland, Oregon, where she ended up making eye contact with a young Somali child (Hadhi’s daughter) with a heart for play despite her difficult situation, were not simple. She had battled breast cancer at the age of 27 and after being broken up with by her boyfriend and simply needing a new start, had decided Portland sounded good.

The two points about this book that stuck out to me (and there were many more than two) were:

  • How utterly daunting it must be to be plopped down in the United States after a lifetime in a culture such as the Somali one. Hadhi’s struggles reminded me of Ping Fu’s story about her entry into the United States when she was ordered to leave China.
  • I especially related to and loved Sarah’s observation that the Somali family’s processing of things was very complex (whereas their inability to communicate in English fed the assumption that they were “simple). Sarah writes, “It was easy for me to make the atrocious assumption that because they couldn’t articulate sadness, helplessness, discouragement, or other emotions in English, they must not feel them.”

The only disappointment of this book for me is the inability to know more, to “fix it,” to see the girls and their mother flourish and to know Sarah’s health stabilized. For the girls, it is possible to contribute to their trust fund by utilizing the information in this link: http://sarahthebarge.com/theinvisiblegirls/. (But seriously — I have to admit I want (perhaps selfishly) to know more — did they assimilate into their American schools? Are they still crazy about Justin Bieber? Did their father end up supporting them emotionally and/or financially once he came back into their lives? Not sure if those questions will ever be answered but I like the idea of a whole community of readers wanting them to have the means to go to college).

And as for Sarah, I was almost gaping-mouthed at her descriptions of her medical experiences, and at the disappointments her support network handed her (especially the ex-boyfriend). I have to hand it to her for the way she continues to share about her experiences with breast cancer at such a young age (such as this post about The 31 Ways To Help A Friend With Breast Cancer). I want to take her out to coffee and do some of those 31 things.

In closing, hopefully I’ve conveyed my enthusiasm for the book. When Sarah was being interviewed at Yale for their Physician Assistant program, the admissions committee asked her why they should let her into the program. She responded “Because I’m going to change the world. And I’m giving you the chance to say, ‘We knew her when.'”

I think she’s well on her way to making that change. At least one mom and five little girls think so.

cropped somali women

From www.fineartamerica.com

Resources

Sarah’s Website:  www.sarahthebarge.com

To Purchase the book on Amazon, click here.

Sarah can be found on Twitter by clicking here.

Sarah can be found on Facebook by clicking here.

Information about the issues facing girls and women in Somalia can be found here.