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.

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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.

 

Wife of one, Mom of two, Friend of many.

Getting Lost With Dustin

I seem to get lost every time I leave the Earl May Boat Basin in Bainbridge, GA. I have participated in the Kiwanis River Run there quite a few Januarys, and have gotten lost on the way out almost every time. The year that Paula O’Neill, Arlene Feril, and I rode together (2012) was no exception. We decided to follow the car in front of us because it had running stickers (you know, that age-old indicator that the individual knows where they are going!!). Turns out we were following Dustin Rhodes, who was just as lost as we were. We eventually all figured it out. That January 2012 conversation in Bainbridge was the only time I ever spoke to Dustin face-to-face*.

However, an enjoyable Facebook friendship ensued, especially once we figured out that Dustin, his wife Rebecca, my daughter Tenley, and I had all been at the very same village and church in Guatemala on mission trips (although he and Rebecca were there before Tenley and I were). Once you have been at the church in San Lucas, met its ministers and its people, you never forget.

Our last messages to each other were on my birthday (November 28). Dustin had asked about the Jingle Bell Run (how “low key” it was) and I assured him how family friendly (and non-competitive) it would be.

The following Sunday, Fr. Tim Holeda at Blessed Sacrament added at the very end of the service “please pray for Dustin Rhodes who has been diagnosed with brain cancer.” I could barely believe my ears, since Dustin and I had literally just spoken lightly of a fun run.  Unfortunately, it was true.

Everything moved at lightning speed after that. Dustin, Rebecca, and their son Michael moved back to Pennsylvania to be with friends. Surgery was performed at Duke University in early January. The list of therapies, medications, challenges, and diagnostic procedures is lengthy. So, also, is the list of people who rallied around Dustin, fundraisers that were held (including a skydive/ultra race combination), and compassionate love that was shared.

Dustin participates in the Angels Among Us 5K at Duke University (April 2013)

Dustin participates in the Angels Among Us 5K at Duke University (April 2013)

As of the most recent update on Facebook, the family has shared that the cancer has spread to Dustin’s cerebellum and brain stem. As a result, radiation is no longer going to be part of his treatment plan and the family is evaluating their next steps.

As I was processing this information, I ran across this prayer from the Society of the Little Flower among one of several devotionals that cross my social media stream each day. Something about it intersected (to me) with Dustin’s journey:

God of Miracles, You are amazing!  Out of our emptiness and sterility, You work Your wonders.   Help us to be comfortable with our empty sterility so that You can shine.  Circumcise into the  flesh of our spirits a deep faith in You and Your covenant betrothal of us.  As Jesus touched the  leper with healing power, touch us.  Make us whole and healed.  Make us fruitful so that we can  be a blessing to others and productive in working for Your reign of justice, peace and life.  You  can bring life from where we create death.  Thank you for being the miracle God of Life.  I need Your healing life today!

Time and again over the course of this illness, Dustin and Rebecca have seemed to be the ones ministering to us, as opposed to the other way around. My friends and I have laughed about getting lost in Bainbridge, and the fact that we were following someone who was just as lost as we were. This situation is different and so much more serious. Dustin is not lost here; his unwavering spirit and tenacity have shone brightly. In one of our Facebook conversations, Dustin shared this with me:

God’s work will be done, despite the odds, if we continue to be His hands and feet.

I never had as many face-to-face conversations with Dustin as I would have liked (Lord knows Dustin was so much faster than me that we certainly were never running together!). I feel like I have just scratched the surface of what could have grown into a really wonderful friendship. I fear that in embracing the cause of supporting Dustin, all of us ran the risk of tromping on privacy and personal dignity at a time when this young family needed only to cling to one another and their God. But I suppose, as Dustin said, God’s work will be done…..

….and I’m pretty sure the guy who couldn’t lead three women out of Bainbridge has a very good lock on the Divine.

Thank you, Dustin, Rebecca, and Michael for being just exactly who you are and letting God’s work be done through you.

NOTE: If you are interested in helping Dustin and his family, either financially, by sending a card (appreciated!), or learning more details in order to continue praying/sending good intentions, visit the website at www.dustrhodes.com. Thank you.

*That’s not technically true; I spoke to Dustin face-to-face when I delivered food to his family after his diagnosis. I am so glad I had that opportunity to see him before he moved back to Pennsylvania.

 

Wife of one, Mom of two, Friend of many.

When It’s Your Child, Every Surgery Is “Special”

This is Gabrielle. She has juvenile arthritis and was treated at the Hospital for Specialty Surgery. More about her below.

Because my job involves being a liaison between health insurance enrollees and health plans, I frequently find myself talking to parents whose children need specialty care. Although they have “black and white” questions about benefits, providers, and copays, I hear something else in their voices. I hear the very non-definable and nondenominational parental prayer that everything will be okay.

As a parent, I have a sense of that place from which the parental prayer comes. I have been fortunate that neither of my children needed extended hospital care when they were young. My daughter’s broken foot at the age of three was a challenge but it has become more of a “childhood war story” than an experience that still affects her life and her attitude about the medical field.

When I had the opportunity to write this post, I consulted two friends whose children needed specialty care when they were young. J’s daughter had multiple surgeries for cleft palate when she was very small and has had other orthopedic procedures. N’s child was born with torticollis which caused plagiocephaly —  as an infant he required a helmet, physical therapy, and many out-of-town specialist visits (as an older child he still needs specialized care for hypotonia, dyspraxia, visuospatial deficit and central auditory processing disorder). There were recurrent themes in each of their stories:

Coordination

We know as adults what a pain it can be to navigate the medical system. Referrals, lengthy stays in waiting rooms, confusing lingo …. the list is endless. Dealing with coordination issues when your child is the patient is even more daunting. Both parents I spoke with talked about what a difference it makes when there is a concerted effort by the medical team to coordinate your child’s care. For example, J’s child needed two different dental procedures and the provider was persuaded to do them both while she was under anesthesia, instead of anesthetizing her twice. Things that don’t seem to make a difference on paper can make a world of difference for a child who has anxiety issues.

How Do They See My Child?

J. said it best: “At the moment that provider is seeing my child, I want it to feel like they are dealing with my child and my child only.” In my experience, specialists can be pushed for time, especially if they only visit your town monthly. Does the specialist put all that aside to look you and your child in the eyes, and then to explain to you as the parent what to expect?

What is the quality of their work?

One of J’s biggest recommendations is to research the success rate of a physician you are considering using for your child. If a facility is not transparent and forthcoming with data, think twice.

I am grateful to have an opportunity to share ideas about how to make the best choices for your child (and you) should they ever need specialty care. Thank you J and N for sharing your experiences.

The Hospital for Special Surgery (HSS), in New York City, is one option for pediatric specialty care, especially in the fields of orthopedics and rheumatology.  HSS recently opened the CA Technologies Rehabilitation Center at the Children’s Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years. You can learn more about HSS via their website and their Facebook Page.

Both of my friends talked about the support and information they got from other parents. They encouraged anyone facing a specialty hospital stay for their child to take advantage of the hard-won expertise of parents who are farther down the road than you may be.

I promised you more about Gabrielle. As the parent of a dancer, I know how dismayed a motivated child can be to have physical symptoms keep her from dancing. Through HSS, Gabrielle has been successfully treated for pauciarticular juvenile arthritis. Her mother reports that she recently did a solo in a national competition and won a gold medal! Her complete story is here.

This video contains more information about the Hospital for Special Surgery:


I wrote this review while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.”

 

Wife of one, Mom of two, Friend of many.

The Fine Mirror

In the movie Mighty Fine, Joe Fine instructs the movers from Exodus Moving Company to be very careful with his disco ball when his family is relocating from Brooklyn, NY, to New Orleans, LA. I guess having a personal disco ball was a status symbol in 1974!

Just like the tiny mirrors on a disco ball, the movie “Mighty Fine” shows us the many different facets of a family, especially when that family is dealing with Joe Fine, portrayed by  Chazz Palminteri. In an enjoyable live chat after a recent online preview of the film, Palminteri called Joe Fine a “paradox,” a man who vacillated between angry rages and being the benevolent charmer who tried to keep everyone happy.

When the Fine family, consisting of dad Joseph, mom Stella, (who spent time in hiding as a child during the Holocaust); 17-year-old Maddie, and younger sister Natalie pull up stakes and move to Louisiana in 1974, we learn that the women of the family hope this move will dilute Joe’s tendencies to angry rages. The deterioration of the financing for Joe’s business, though, revives the rage monster and it wakes up hungrier than ever.

Stepping away from the heavy topic for a moment, I have to share the fun and retro-themed joy of all the 70’s paraphernalia in this film. (I was 10 in 1974, the year in which the film is set.) Since there was a live chat occurring among all of the participant bloggers when we watched the film online, it was amusing to hear reactions ranging from, “Oh My God people once smoked inside houses!” to “Oh yeah, I can remember when we had to dial the phone using that rotary dial.”

Back to the film’s “heavy topic.” It was sobering to hear all of the experiences with emotional abuse that the participant bloggers shared. Women whose mothers made courageous decisions to leave everything behind in order to get out of abusive situations; women who had been victims of abuse themselves; women who hypothesized that in 2012 Joe Fine would have had access to a mental health professional who would do a whole lot more than his family physician, who Joe convinced that the only problem was a bit of business stress.

Natalie Fine recites a poem at the end of the movie. A line from that poem stayed with me after I watched the film, as I tried to decide what to focus on for this blog. Here’s the line:

“There’s a monster in dad, and it makes him wicked mad.”

When asked about emotionally abusive parents such as Joe, Chazz Palminteri said that every parent needs to remember: “You are a mirror.”

What did Maddie see in the mirror of her mother when she tried to placate Joseph? What did both girls see when Stella made her final decision?

I hope you will consider finding out how everything ended by going to see Mighty Fine when it is released on May 25.  It is only available in certain cities (sorry, Tallahassee). You can check here to see if the film is coming to a theater near you.


Here is the film trailer. (If you notice a resemblance between Andie McDowell and Rainey Qualley, who plays her older daughter, you have good reason! They are real life mother and daughter.)







“I participated in a campaign on behalf of Mom Central Consulting for Mighty Fine and the distributor. I received access to an online showing of the film and a promotional item to thank me for participating”.

Wife of one, Mom of two, Friend of many.

Improving Nutrition A Sprinkle At A Time: Future Fortified

My physician recently advised me to start taking Vitamin D3. When I went to the store to buy some, I faced rows of shelves offering me choices: various formulations, flavors, and strengths.

Adolescent girls, pregnant women, new mothers, and young children in developing countries don’t have the luxury of countless mineral and multivitamin choices, nor do they always have a nutritionally rich food supply. They desperately need access to essential nutrients, such as vitamin A, iodine, iron, zinc, and folic acid, to survive. (The first 1,000 Days, from pregnancy through the second year of life, are especially critical.) Beyond improved health, investing in improved nutrition supports progress in education and poverty alleviation.

When I first learned of the Future Fortified program, I was attracted to its practicality.  For example, Future Fortified encourages the use of home nutrition packets, small packets filled with a combination of micro and macro nutrients that are sprinkled onto a child’s meal a few times a week. These packets are a proven cost-effective way for mothers around the world to get essential nutrients into their children’s (and their own) diets while continuing to consume local foods.

If you are one of my usual readers, you know I love using my blog as a vehicle for messages about causes and ways we can all work together for good. This particular cause had a special appeal to me because the reality of hunger was brought home to me last summer when Tenley and I visited Guatemala. Tenley’s sponsored child, Estela, is six years old and the youngest of 10 children. Her family lives on around $60 dollars a month. In Guatemala, the reality of “work for a day, eat for a day” was strikingly obvious. Work is difficult to come by; it is not a matter of willingness to work but rather availability of a job to do.

Future Fortified fills a need, does it efficiently using common sense, and invites us to help in ways as simple as a tweet or as personally involved as a donation.

To learn more about Future Fortified and to discover ways you can get involved, visit their site here.

You can also follow Future Fortified via Facebook and Twitter.

Lastly, this infographic provides an overview of Future Fortified in addition to outlining ways you can become involved in the Future Fortified blogger alliance!

I wrote this review while participating in a blog tour campaign by Mom Central Consulting on behalf of Future Fortified. To thank me for my contribution, Mom Central donated $20 to the Future Fortified campaign.”

*Some of the factual content within this blog was taken from the Future Fortified website.

Wife of one, Mom of two, Friend of many.