Friday, July 29, 2016

Shout it out loud

Two weeks in a row, at two concerts Addison has been reprimanded for his presence.

"You know he has to stop the noise when the music starts?"

"He is ruining this tribute."

"I'm not talking about his ability..."

"He is distracting."

"He is a disturbance." 

The words. The hate. The ignorance. The lack of understanding and acceptance.

Stomach clenching, heart racing, hands shaking. A physical body protesting, wanting to shout...

"For thousands of years you've had your way! The inconvenient people...the people you don't want to deal with or attempt to understand...they have been kept out of sight, out of mind. But those days are over. This is our era. We are trying to take the shitty world you have given us and transform it into a place of tolerance and inclusion. Your time is over."

But deep inside a troubled heart...something says...no. A flicker of remembrance,

When Jesus saw the multitude he was full of compassion.

Bleeding and aching by their hands..."Father forgive them." 

Having known such love, we cannot understand the soul deprived it's knowledge. Having never known the hate, we cannot understand the roots, sinking in and perverting down to the very organic makeup of who we are.

The spirit revolts against a person who would deprive a child...

...a child who has lost hours, days and weeks of typical play and discovery to therapy and medical appointments

...a child with emotions of a three year old who cannot fully express himself through speech

...a child with the desires of a toddler who lacks the physical ability to walk, run and jump with his peers

...a child with the needs of a typically developing child who must devote countless hours and energy he does not possess to nourish his body

Who would attempt to remove the music that has become the constant joy and comfort in this life? Passion demands the punishment of such a person.

But when we know the heart of Jesus, anger transforms into tears. When we ponder...

...the eyes that cannot see past a facial structure

...the soul that has not felt the thrill of delight at the sound of a child expressing pleasure in music

...the mind that does not know the eternal value of a human being

...the spirit that has been disabled from embracing the beautiful pattern of every individual

I will never condone their behavior. And if met that person again? I'm not guaranteeing I wouldn't tell them exactly where they can put their concert etiquette rule book.

But beneath it all...I feel sorry for those blinded eyes.

I wish instead they would have come to know Addison.

I wish they would have felt the same pride we felt in his ability to express his feelings.

I wish they would have been honored by their legacy, music appreciation being fostered in a young mind.

And, Addison? Never let anyone quiet your voice.

Those feelings? Keep talking about them, my man. When you feel the joy, shout it out loud.

Some day you will blow us all away. Keep shining bright.

Your joy will change the world.


Tuesday, March 29, 2016

Dr. Taussig

Wearing pearls and reading x-rays. Way to go, Dr. Taussig. /// image via
In honor of Elizabeth Blackwell's birthday, February 3rd marked the first National Women Physicians Day. February also happens to be CHD awareness month. The timing seems perfect to share with you one of my heroes, Dr. Helen Taussig. (Let's pretend it's still February and I'm actually finishing this on time, shall we?)

Dr. Taussig was a cardiologist at Johns Hopkins who founded the field of pediatric cardiology. She also assisted in developing the blue baby procedure (Blalock-Taussig-Thomas shunt), still commonly used today. The B-T shunt opened the world to the possibility of open heart surgery and revolutionized the treatment of babies born with congenital heart defects. Scientifically, she's incredibly hard core. But what I love most is her remarkable character which enabled her medical success.

Helen Taussig...

...was not stopped by her personal struggles. 

Dr. Taussig struggled with dyslexia which severely effected her early years of education. You guys, can't tell you how excited I was when I learned this! I was diagnosed with dyslexia in early elementary and struggled with reading for years. I am now a competent reader who absolutely loves reading (thanks, Mom!) but I am also a very slow reader, struggle immensely with spelling (thanks, spell check!), and sometimes have to stop and think when writing by hand. My mom says we all have struggles and they make us great. I wish I could ask Dr. Taussig what encouraged her to push through those pages of swimming letters and conquer reading. But I know fighting that battle gave her the endurance to face greater challenges. And knowing what she was able to accomplish because she did reminds me I have no excuse to be anything less than exceptional.

...was not stopped by opposition.
For many years, Dr. Taussig studied medicine at Harvard and Boston College but neither would grant her a degree because...she was a woman. She was not allowed to speak to her male classmates because of fear of "contamination". Whatever that's supposed to mean... But despite the chauvinistic medical culture, she kept going and eventually earned her medical degree from Johns Hopkins (in your face, Harvard).

...was a woman living (and thriving) in a man's world. 
And, I might add, she put them all to shame. Should she have had to prove herself as a woman and excellent doctor? Absolutely not. But she did not allow their disbelief in her ability to deter her. And her reward was a full professorship and equal acknowledgement.

...challenged excepted thinking.
It has amazed me to observe among Addison's caregivers the difference between the providers who accept standard teaching and those who challenge the system and are not afraid to try something new.  The adventurous ones? They are the great ones. Dr. Taussig chose hope for her terminal babies in a world where they were left to die. She was a great one.

...believed in the improbable.
For centuries the heart was considered untouchable and blue babies terminal. Dr. Taussig was willing to take the risk for something she believed in. She did not throw away her shot. (Points if you got that reference...)

And her legacy?

She changed the world.
Every 1 in 100 children are born with a CHD, many of whom will require surgical intervention. Because of Dr. Taussig, there is treatment, there are options there is HOPE of a long and meaningful life. Her work lives on in thousands of tiny beating hearts.

I would love to know...who are some of your heroes in medicine?

Monday, March 7, 2016

Gel Manicure Experiment

On second thought, this floating hand picture is a bit creepy. Oh well...making do with what I have.
Playing violin means short, ugly nails. In the words of my teacher, "they are only too short if you bleed." Ouch. While I appreciate my playing being much improved with short nails, I still don't like them. So keeping my nails neat and polished has become important. I have tried nearly every long-lasting marketed brand and have never made it two days without a chip. And I really don't have time to polish my nails every other day. Granted, it's probably my fault because I'm not exactly kind to my nails. Still... I even tried the Jamberry nail wraps but that turned out to be an expensive disaster that left my nails very damaged.

At home gel manicure have become wildly popular in the last few years for their duration. Late on the bandwagon, per usual, I chose two well reviewed methods and decided to perform my own experiment. Here was the plan:

Method 1 and Method 2

-Paint the left hand with method one and the right with method two.
-Record chip time.
-Paint the left hand with method two and the right with method one.
-Record chip time.
-Repeat three times to make sure data is accurate. (There is a little scientist in me that refuses to be quiet.)

After the initial experiment I alternated prep method, dry time and coat thickness so as to take all factors into consideration. The results were overwhelmingly in favor of Method 2. For me, this method does not last the two weeks the original post claims. But again, I'm pretty tough on my nails so that doesn't really surprise me. It does last a solid 7-8 days and I can totally live with that. And, because it dries so fast, I can paint my nails in the evening without worrying about them getting messed up when I go to bed. Score.

You can find the gel manicure method I use here. Some changes I made: I use Sally Hansen Complete Salon Manicure for color (it's what I had and I think it looks nicer and hold up better than Essie) and I apply a second coat of Seche Vite top coat after two or three days. That's it! Quick and easy. I love the shiny look of a gel manicure and most of all finally finding a method that lasts!

Do you have a favorite manicure routine?

Monday, February 22, 2016

The Ultimate Pre-Med Reading List

As many of you know, I want to be hope to be will be a doctor someday. But as you probably also know, I am not actively pursing my medical degree. Life happens. However, just because I am not formally studying medicine does not mean I am not daily studying medicine and what makes a good doctor. I feel safe and in control when I am informed so reading and research are very important to me. Knowing what to expect makes big scary things (like med school) seem manageable. Plus, I really, really love learning about medicine, medical ethics and generally getting a peek into the minds and lives of doctor authors.

This is a list in progress. It will be updated as I remember titles and find new reads. I have read every book on this list, but did not necessarily love them all. If you have any books to suggests, please share. I apologize in advance for the length of this post! (Click here for a copy of this list, sans descriptions.)

Better by Atul Gawande
This was the very first "doctor book" I read and, I've gotta say, it's still my favorite. It opened my eyes to so many aspects of medical ethics I never considered before and challenged (and changed!) my thinking in so many way. We're talking about doctor's involvement in reimbursement, malpractice, lethal injection...hard topics but topics that desperately need to be openly discussed.

Gifted Hands by Ben Carson
I am a huge fan of Dr. Carson's work (Hemispherectomy? HELLO. Can we say flippin' awesome!). Reading his life story gave so much insight into his character and practice.

One Doctor: Close Calls, Cold Cases, and the Mysteries of Medicine by Brendan Reilley
This book has some awesome thought on the need for primary physicians and the important (and central!) role they (should) play in patient care.

The Soul of Medicine by Sherwin Nuland
These stories...some made me laugh, some made my cry, some made me angry with the world in general. It's a raw look into a side of medicine rarely brought to the light.

The Checklist Manifesto by Atul Gawande
This book isn't necessarily about medicine. Dr. Gawande has done some impressive work with WHO and this books discusses the practical use of a seemingly simple tool -the checklist- to prevent error in all fields. If you are interested in error prevention in medicine this book is very insightful.

Being Mortal by Atul Gawande
I was so excited when I saw Atul Gawande had a new book out (I'm a fan...can you tell?) but it took me months to get around to reading it. Being Mortal discusses our modern approach to aging and death and contrasts it with practices of the ancient world and other cultures. If you have a heart for geriatrics or are trying to make decisions about aging parents or grandparents I can't recommend this book enough. Once again, Dr. Gawande turned my thinking upside down.  There is a better way.

Complications by Atul Gawande
If it's by Atul Gawande I'm going to recommend it whole heartedly. This book focuses more on stories from his surgical residency exposing honest and sometimes shocking aspects of happenings in the operating room.

The Pact by The Three Doctors
I love this story! Three young boys, living in a community of drugs, gangs and violence, make a pact that one day they will go to medical school and become doctors. This story follows their lives through many hardships and I love seeing how through each obstacle they encouraged each other to keep that pact. (Spoiler: they do.)

How Doctors Think by Jerome Groopman
Honestly, it's been so long since I read this I don't remember much about it...sorry! I do remember the writing style being difficult but the thoughts were worth the effort...

The Uncertain Art by Sherwin B Nuland
“Life is short, and the Art long; the occasion fleeting; experience fallacious; and judgment difficult. The physician must not only be prepared to do what is right himself, but also to make the patient, the attendants, and the externals, cooperate.” –Hippocrates
One of my very favorite Hippocrates quotes that sums up this book so well as it explores the questionable side of medicine and why you can't be too quick to rule out anything.

Hot Lights Cold, Steel by Michael Collins
Michael Collins is awesome! He reminds me so much of my father. He is just honest, down to earth and understands so well the heart of medicine.

Blue Collar, Blue Scrubs by Michael Collins
See above. While Hot Lights, Cold Steel covers Dr. Collins' orthopedic residency at Mayo, Blue Collar, Blue Scrubs discusses his journey to and through medical school.

Doctored by Sandeep Jauhur
Again, I don't remember much about this book except it bordered on way too cynical but pulled it back in the last few chapter...

Intern by Sandeep Jauhur
See above.

Every Patient Tells a Story by Lisa Sanders
If you like House, you will like this book. Dr. Sanders was a medical advisor for House and, much like the episodes, each chapter begins with a patient presentation and ends with a diagnosis, explaining the doctor's reasoning along the way. Read this on vacation at the beach one year and this fits perfectly my definition of beach reading. :)

Doctors Sherwin B Nuland
Essentially, each chapter highlights a different doctor and their contribution to medicine. This book is big and tends to be dry at parts. But, featuring Hippocrates, Galen, Laennec, Semmelweis, Vasalius, Taussig...it's kinda like a meeting of the minds so definitely worth the read.

What Patients Taught Me by Audrey Young
Pretty fascinating to hear about rural medicine in the Pacific Northwest. And when I say rural, I mean rural. Living in the doctor saturated northeast it's hard to comprehend a world where you need to travel for days to receive medical care.

Everything I Learned in Medical School: Besides All the Book Stuff by Sujay Kansagra
Short read, not necessarily informative as much as humorous. The section on how to respond to a superior's jokes was hysterical.

Confessions of a Surgeon Paul A. Ruggieri
I don't remember anything special about this book...

The Cost of Cutting by Pail A. Ruggieri
A rather cynical look at reimbursement, insurance and surgery. Cynical but informative.

On Call: A Doctor’s Day and Nights in Residency by Emily Transue
This book itself wasn't the best but I love Dr. Transue's approach to medicine, her work/life balance and the way she interacts with her patients.

Patient by Patient by Emily Transue
See above. This book focuses more on her practice in primary care.

100,000 Hearts by Denton Cooley 
If I get a little giddy just tell me to shut up, okay? I. Love. The. Human. Heart. 100,000 Hearts is an autobiography by Dr. Cooley. If you don't know who he is you are really missing out. This guy is awesome. As a student of Dr. Blalock (!!) he pioneered cardiac surgery and invented many of the devises still in use today (arterial graph...heart/lung bypass...defibrillator, anyone?). Additionally, he invented and performed the first artificial heart transplant in the U.S. Rockstar material.

What Doctors Feel by Danielle Ofri
I so appreciate Dr. Ofri's honesty in addressing many of the emotions doctors face and how they affect their well being. To foreknow is to be forewarned.

Between Expectations by Meghan MacLean Weir
These stories from a pediatric residency are heartbreaking as they address questions regarding the healing, treating and letting go of young life.

The House of God by Shem Samuel
I know this is supposed to be an iconic book but I did not care for it at all. I found it sexist, racist, cynical and generally offensive. Perhaps I would feel differently on the other side of my medical training but for now, not my cup of tea.

In Stitches by Anthony Youn 
Okay, so maybe I profiled a little when I found out Dr. Youn is plastic surgeon and TV doc. I expected shallow, false...I was wrong. As he chronicles his journey through medical school Dr. Youn is very honest and real about just how human he is. Refreshing. I loved reading about his family dynamics and how his father, who some might consider stern to a fault, was one of his greatest influences.

Med School Confidential by Robert H Miller
This is just a very practical, question and answer, what to expect book. With many med student/resident/doctor contributors it covers some basic topics from applying to med school, to clerkship, to residency interviews and specialties. If you're feeling overwhelmed by the big, scary idea of becoming a doctor this is a wonderful resource.

On Becoming a Doctor by Tania Heller
Again, just a very practical book. Each chapter is written by a doctor from a different specialty and explains why they chose their specialty and the pros and cons of working in that field. Dr. Heller practices at Georgetown so a lot of the doctors are from my area and one contributor is a friend of friends so that was kinda cool...

Miracles and Mayhem in the ER by Brent Rock Russell
Nothing earth shattering but some crazy ER stories for those of you interested in emergency medicine.

The Medical Book by Clifford A. Pickover
My mom tells of passing time at her father's desk flipping through the PDR and admiring the pretty, bright pictures of all the pills. (Guys, I seriously want a PDR.) Apparently I'm my mother's daughter...I love the big, shiny pictures in this book of (among other things) anatomy, microorganisms and molecular structures. Basically, this book is a trip through history with medical discoveries as your mode of transportation. Definitely not an in depth exploration of each subject but enough to wet your appetite. And all the pretty pictures!

The Soul of a Doctor: Harvard Medical Students Face Life and Death
A collection of stories by Harvard medical student describing the effects patients interactions had on them. The socioeconomic issues associated with medical care was a central topic which, of course, I loved. :)

Learning to Play God by Robert Marion 
I have been wanting to get my hands on a copy of Robert Marion's Intern Blues for a while. But Learning to Play God is the only book of his my library has so that was that. Dr. Marion did his medical school clerkship at hospitals in the Bronx so his stories are a combination of the interesting, insane and unbelievable. He ended up becoming a pediatric geneticist which is a unique specialty and, as Addison's sister, I have learned first hand how rare and important a caring geneticist is! Seeing the cold, clinical view his colleagues had of children with genetic disabilities had a strong influence on his practice and I very much appreciate his attitude toward his patients...if only ever geneticist would think/act the same!

Baghdad ER: Fifteen Minutes by Todd Baker
Okay so this book is one I really have a hard time with. Medically, the stories of this front line ER are pretty fascinating. But the writing style is challenging to read and there are an abundance of typos which really send my dyslexic brain into a tailspin trying to figure out if I read something wrong (I know, I know...who am I to comment on typos?). So there is a lot of re-reading paragraphs a million times. But it is worth pushing through for the stories. I clearly remember 9/11 and the following events in Afghanistan and Iraq. But at the time I was too young to form an opinion or fully grasp what was happening "over there". It is so interesting to look back on these events as a fully comprehending adult. Did you know it was common for extremists to use people who happen to have Down Syndrome as suicide bombers? Absolutely horrific and heart wrenching. The brutality is just unimaginable.

Blood and Guts: A Short History of Medicine by Roy Porter
So disappointed in this book. I was expecting satire. It was boring and really didn't say anything I didn't already know. The images were interesting so maybe worth a thumb through. If you really want  a good history of medicine I would recommend reading instead Doctors by Sherwin B. Nuland.

If you read all the above, you are a saint. :) Have you read any of these books? Any suggestions for further reading?

Cheers!

last update: 4/1/16

Tuesday, February 9, 2016

What Siblings of Children With Special Needs Know

photo credit: susan schmidt
Siblings of children with special needs are perceived as one of two personalities. Either the Bitter Cynic or the Martyred Saint. In the mast majority of cases, neither is true. Don't get me wrong. Being a sister to Addison is hard. Probably one of the hardest things I have ever done. And there are a bitter few who choose to wallow in self pity and ignore the obvious blessing they have been given.

And then there are the rest of us. But we are no saints. We are playing the cards we've been dealt. You either play them well or you fold and live with the consequences. And, contrary to popular belief, the majority of siblings I have had the good fortune to meet are remarkable people. They love their sibling, realize their life is better because of their sibling and are working to make the world a better place.

Being a sibling to a child with special needs is intense. It's something you cannot experience without being changed. And you learn a few things about life along the way.

Siblings of children with special needs know...

Their sibling is, first and foremost, their sibling.
And you, as a sibling, need time to enjoy your brother or sister as just that...a brother or sister. When your sibling was born you anticipated the joys of having a brand new friend. The reality is, most of your brother or sisters life is spent in therapy and doctor's appointments. But beneath the diagnosis is a child who needs time to be a child...to play, explore, be stupid and silly and indulge in all manner of nontherapudic adventures with their sibling by their side.

Their sibling is capable of more than you believe.
Carmella (4) is an inspiration. She pretty much refuses to believe Addison incapable of anything. If she is coloring, he has no option but to color with her. If she wants him to communicate she will make him sign. If music is playing she expects him to dance. She believe he can and so he can.

The value of every accomplishment. 
This past week Addison had his Early Intervention evaluation. At two and a half he tested on level with a typically developing child of 18/19 months. For many this would be discouraging. But we celebrated. We have seen him work hard for every inch of ground he has gained and we couldn't be more proud of how far he has come.

Never take for granted your ability. 
Addison spent six months learning to sit up, two and half years learning to crawl and, at almost three years, he still cannot eat. He is amazing at ASL and says a few words but he cannot yet communicate by speech. Every day I perform all these basic functions without thought. For every ability you have, give thanks. Nothing is guaranteed.

With ability comes responsibility. 
It's pretty amazing to note how many siblings end up working as therapists, social workers, special education teachers, doctors...professions directly involved in helping people with special needs. One of the founders of the Down Syndrome clinic at Boston Children's Hospital is brother to a young woman with a diagnosis of Down Syndrome. When you have a brother of sister with special needs your realize your duty to use the gifts you have been given to love and serve without limitation.

There is great injustice in the world (but there is also great love).
Being a sibling gives you a front row seat to the injustices your sibling will experience. From social stereotypes...to ignorant remarks...to the political inequalities of people forced to work jobs below minimum wage in order to receive benefits...and the ineligibility of anatomical gifts for people with special needs... It is sobering to reflect on the hostility of the world in which your sibling will live.

But as a sibling you also get a front row seat to the love of many. From the therapists who faithfully work with Addison...to the doctors whose genuine care has made his life better...to the families in our Down Syndrome group who encourage us to believe in his potential...to the friends whose prayers and love have carried us through so much...to the small children who have welcomed Addison as a friend... There is so much love. Never loose track of the light.

Life is not about you.
It really isn't. There is so much more than you. There is so much more than your goals and your plans and your life. When you are sibling to a brother or sister with special needs there will be disappointments. There will be missed events during hospitalizations. There will be family plans canceled because your sibling cannot handle the situation. There will be times when your life will be put on hold. There will be pain. There will be so. many. tears. But it will always be 110% worth it. And from loving your sibling you have learned there is something greater. People hurting. People suffering. People lonely. People in need of love. People.

If you are a sibling or loved one of a child with special needs I would love to hear what you would add to this list! Let me know in the comments. 

Wednesday, December 23, 2015

Gift Wrap Inspiration

I know I have been conspicuously absent around here. Apologies all around! There is so much I would love to share about the holiday season and especially how my family does the holidays because it's pretty unique and special. But I always find that during the holidays I'm too busy actually taking part in the festivities to write about it. :)

Obviously, there is SO much more to the season than shopping, planning, buying and wrapping presents. But I really do enjoy giving to friends and family and thinking up gifts that will make them feel special and loved. It doesn't matter how amazing the present is, thoughtful gift wrap makes it *that* much more special.

It's always so fun to observe the presents under my family's Christmas tree. Everyone has such unique style in their wrapping, from my father who considers high-quality wrapping a plastic Target bag instead of a plastic Wal-Mart bag to Carmella (4) who thinks the more pink, glitter and bows the better to Nathaniel (13) who is obsessive about the corners on his packages to Ellie (8) who demands on no more than three pieces of tape per package.

Sharing some of my gift wrap inspiration in case you, like me, are a last minute wrapper:
And a sample of the final product:
Find more wrapping and Christmas inspiration on my Pinterest board, Most Wonderful Time of the Year. I would love to hear what inspires your Christmas wrapping...comment below and let me know!

Wednesday, November 25, 2015

Tybee Island

Tybee Island was not our destination. Twelve years ago we headed south for Disney World. Savannah was our rest stop, Tybee Island just a day trip for an event at the science center. But then we saw the lighthouse and we found the beach. That beautiful, perfectly deserted beach and we never did make it to the exhibit.

Nine consecutive trips later, this detour has become our home away from home. My family spends three weeks every summer on this tiny, two-mile island. We unplug, read books, play cards, cook so much food, walk the beaches and take a break from the rush and pressures of home. It's a time to regroup and recharge for the challenges of the year ahead. We now have so many friends here who have made us feel welcome and given Southern hospitality a greater meaning. This year dear-friends-turned-family traveled all the way from Minnesota to spend a few days of awesome conversation, eating and enjoying each others company.

Sometimes you find something you didn't know you were looking for. This wasn't the plan. But it's perfect. Oh so perfect. And you slowly discover this is where you were meant to be. It is the best place to be. And your plans don't matter anymore. Perhaps someday you'll arrive at your original destination. And maybe it's a detour but a detour is still part of the journey. This, this is now.

Monday, November 23, 2015

Getting Crafty | Fall Edition

Have you ever had a Pinterest fail? Pinterest is the best but I have had more DIY fails than I care to count. It just looks so easy...until you try it. Last Christmas I bought three yards of Tartan print flannel for a Pinterest project that quickly deteriorated into a full blown disaster. And all year I have regretted the waste of my fabric purchase.

Until now! Inspiration struck and this time IT WORKED. I cut down my three yards to 2.5 (so as not to drown) and folded the flannel into a seriously awesome blanket scarf. Guys, it is so warm and cozy! Plus, because of all the colors in the print, it should go with pretty much everything. Which means I will not be taking it off until spring. I did not hem but I think I may do a straight stitch around the border so it frays enough but not too much.

And to further the awesome, a here VERY similar scarf here is selling for $45 (gag). With sales and coupons I paid less than $5/yard. Guys, it's hard to beat the thrill of a really good deal.

In other Pinterest worthy news, after hearing much about apple cider donuts I took advantage of a lazy Sunday morning and gave them a go. Mella + Elsa were my helpers and we used this recipe. We made our own boiled apple cider and fried without too much disaster (be proud). Conclusion? They were okay but I don't think worth the hype. And, at least this particular recipe, did not have as much of an apple flavor as I would have liked. I might try a baked and/or yeast version sometime...if you have a recipe you like I would love a copy!

Care you share your recent crafting adventures?

Saturday, November 21, 2015

Dear Medical Professional

photo credit: susan schmidt
inspired by Morgan's fabulous post, Metrics of Affection...

Dear Medical Professional,

I hope you understand what an amazing privilege you have. This year, in the United States alone, 6,000 babies will be born with Down Syndrome. And you, YOU, will be the very first person to welcome that baby into the world. Those 6,000 scared and confused families are not going to look to their friends or relations for answers...they are going to look to you.

You will be the one to share the news of their baby's diagnosis.  You will answers their endless questions about the implications of Down Syndrome. You will set the tone of that baby's first days and weeks of life. And you words and action will determine their child's reception.

Two and half years ago my brother Addison-sometimes-Henry was born. While we knew he had a CHD we did not have a prenatal diagnosis of Down Syndrome. There were many specialist present at his deliver. And when he was born they knew. But no one wanted to be the one to deliver the news. Although he was stable, they swept him away to the NICU before my mother could hold him and she still regrets the loss of those precious early bonding moments.

He was three days old when we received a definite T21 diagnosis. "I'm sorry." "This shouldn't have happened." Statistics. Complications. Referrals.

I'm ashamed to say, we spent the first week of his life mourning his diagnosis and the bleak picture the professionals had painted of his life. Not one doctor, not one nurse congratulated us. Not one of the many healthcare providers involved in his birth told us what an amazing boy he was and what a bright future he had. To them, his birth was a genetic mistake. And that is what they conveyed to my family, already scared in the reality of this unfamiliar territory.

I can't encourage you enough, if you have the opportunity to greet a child with Down Syndrome, please take time to express to the family how pleased you are for the arrival of their beautiful baby.

Please tell them their child's future is bright and the sky is the limit.

Please tell them they are living in a wonderful era for people with Down Syndrome.

Please tell them their child is more than a diagnosis.

Please be honest and tell them this will be hardest things they've ever done but their child will always be 110% worth it all.

Please tell them, for now, the pain and tears are real but they are nothing compared to the incredible joy the future will hold.

Wednesday, October 28, 2015

Why I Love "Go Set A Watchman"

Like everyone else in the world, I love To Kill a Mockingbird. Like everyone else in the world, I was surprised/excited/nervous to hear of the release of Go Set a Watchman. But unlike everyone else in the world, I love Go Set a Watchman and think it a worthy sequel to Harper Lee's classic tale.

I have yet to hear a positive review for Go Set a Watchman. Several have said it was only published because it's Harper Lee, one friend said it was boring but the main complaint has been, it ruins Atticus' character.

***keep in mind this post will, most likely, include spoilers***

In case you haven't read GSaW, the very abridged synopsis goes something like this: Grown-up Scout, now living in New York, returns home to visit Mayberry (←small, southern town...Maycomb, Mayberry...you can understand my confusion). Through a series of events she discovers Atticus and her love interest/Atticus' protege are members of the newly formed Citizens' Council. Her world comes crashing down as she realized her father is not who she thought him to be.

Reader's main quibble seems to mirror Scout's feelings perfectly. In To Kill a Mockingbird we all fell in love with Atticus and hailed him as a great Civil Right's activist. So naturally our justice seeking hearts are devastated to learn of our hero supporting something as vile as segregation.

“What would Atticus do?” passed through her unconscious; she never realized what made her dig in her feet and stand firm whenever she did was her father; that whatever was decent and of good report in her character was put there by her father; she did not know that she worshiped him.”

But don't you see? That's just the point!

People are flawed. Fathers, mothers, friends, celebrities and historical figures. They all get stuff wrong. You can't set you moral compass by any one person. Because they will let you down. And, like Scout, your world and sense of morality will tumble if it's dependent on the supposed goodness of any individual.

“Every man’s island, Jean Louise, every man’s watchman, is his conscience. There is no such thing as a collective conscious.” 

But, guys? Flawed people can get stuff right, too. Good people aren't always good and bad people aren't always bad. You can learn something from anyone. Atticus' belief in a despicable practice and his ignorant justifications of his beliefs do nothing to change the fact that his actions in To Kill a Mockingbird are noble, right and commendable. Atticus is a good father. He did good works. But he is flawed and has flawed thinking. He's human.

“As you grew up, when you were grown, totally unknown to yourself, you confused your father with God. You never saw him as a man with a man’s heart, and a man’s failings—I’ll grant you it may have been hard to see, he makes so few mistakes, but he makes ’em like all of us.” 

I would like to tell you about my cousin C. When C experienced some traumatic events in his early teens, instead of facing the hurt, he masked the pain with substance abuse. He spent his teen and young adult years in and out of jail on various charges, including armed robbery. Eventually the drugs he embraced took his life.

The world would not classify C as a good person. But to my siblings and I he was always the big brother who was never too busy to play hide and seek or build a snowman. We were well aware of the bad things he had done but we knew he was not a bad person. He was our big brother and friend.

It would be nice if people fit inside our mental check boxes of good, bad, neutral. But that's not the way the world works.

 “I need a watchman to tell me this is what a man says but this is what he means, to draw a line down the middle and say here is this justice and there is that justice and make me understand the difference.”

People are flawed creatures. Inevitably they will let you down. There is evil in us all.

But there is also a great deal of good. And you can't ignore the good. Be wise, acknowledge the wrong. But keep looking for the good...it's there somewhere. And when you find it, take heart. Relish that, no matter how dark, there is always a glimmer of goodness.

“As she welcomed him silently to the human race, the stab of discovery made her tremble a little.”
 ― Harper Lee, Go Set a Watchman
Have you read Go Set a Watchman? I would love to hear your thoughts...especially if you disagree!