She Made Me a Mommy: Emmy Buffkin's Life Remembered

BNA Board member Kristen Buffkin and her

husband, Jason, recently organized a memori-

al fundraiser for their daughter Emmy. Emmy

had been prenatally diagnosed with Trisomy

18 and lived for 118 days. Family and friends

donated over $5,000 to BNA in memory of

Emmy on the anniversary of her birth. Kris-

ten and Jason celebrate Emmy's birthday

every year, but this year they sent out sixty-

one cards (each with a different picture of

Emmy) explaining what BNA’s support had

meant to them and asking that donations be

made in Emmy's name. "As a board member

I am even more in awe of BNA's amazing

work," Kristen says. "They truly help every

family they support."

BNA relies completely on donations and

fundraising efforts to provide its service year

to year. "There are times when we don't know

if the organization will have the funding

needed to continue," adds Kristen, "And I

knew my amazing friends and family would

be happy to help, especially in Emmy's

name." We thought this fundraiser provided a

great opportunity to remember Kristen and

Jason's story—and to share with you how

they were referred to BNA, what a blessing

Emmy was, and how she still impacts their

lives today.

Tell us about Emmy's diagnosis and how the

news was given to you.

We found out that something wasn't right at

our 20-week anatomy scan. Emmy had sever-

al markers for a genetic syndrome, and my

OB predicted that it was Trisomy 18. A few

Inside this issue:

A Baptism Kit for Baby 3

What Parents Say About BNA 4

Fall of 2019

Continued on page 2

days later an amniocentesis confirmed that

diagnosis. Those doctor appointments were

some of the worst days of our lives.

Did the doctors offer any hope at diagnosis?

The doctors offered almost no hope at diag-

nosis. We were told that this diagnosis was

not compatible with life and that our baby

would likely die in utero over the next few

weeks and if she made it full term, she

would likely die during childbirth. I do

remember the doctor saying that there is

no way of knowing if she will survive or

how long, but the tone in her voice was

very negative and very dire. She did say

that some children do live, but are

normally "vegetables" and have no real

quality of life.

When did you hear about BNA?

We were completely devastated after re-

ceiving our diagnosis and all of our family

and friends were desperately trying to help

us. My husband's uncle, who is a Lutheran

pastor in Augusta, Georgia, called us to tell

us that he’d found an organization online

who helped families with difficult prenatal

diagnoses. It just so happened that this

group was based out of Charlotte, where

we lived at the time, so my husband

reached out to Tracy that same day. I think

we spoke over the phone with her the very

next morning.

Was the BNA approach to Emmy's diagnosis

different than the doctors? How so?

Tracy instantly gave us the love and sup-

port we needed. And when I say us, I mean

all 3 of us; Jason, myself, and most im-

portantly, Emmy. She referred to our

daughter as a blessing and an angel and I

knew right away that she truly valued our

Page 2

...baby. As soon as the doctors con-

firmed a Trisomy 18 diagnosis for Em-

my, they completely stopped caring for

her and all of a sudden there was only

health care consideration for me. It was

shocking to me—especially being a

health care professional myself—that

they did not value this baby's life. It's

heartbreaking enough to receive this

diagnosis, but to not feel 100% support-

ed by your health care team—who you

are placing so much trust in—was just

another harsh letdown. I can't imagine

not having had BNA by our side.

What are your best memories of your

pregnancy with Emmy?

Emmy loved bluegrass music! We would

put it on and turn it up and she would

dance around in my belly! It just made

me happy to think that she was getting

to enjoy something that her dad and I

love and want to share with her! Even

after she was born, if she was upset, we

would play bluegrass and she would

almost always calm down. I also read to

her a lot and sang to her and told her

how much I loved her every minute I

could while she was moving around in

my tummy. We did not know if she

would make it out alive so we wanted to

cherish every second.

Tell us about the day she was born.

I was very anxious because I was 42

weeks pregnant and they were going to

induce me in 2 days. I did not want to

go in, because inside my belly she was

safe and she was alive and I just wanted

to protect her for as long as I could. All

of our family members were due to

come into town to be here for us and I

was home alone this last afternoon. It

had been very hot in Charlotte and

there was this intense, but quick rain-

storm and when it was over there was a

rainbow over our backyard. It was only

over our yard and nowhere else. This

calm came over me and I knew then

that I was ready to meet her! The entire

birth process was stressful and scary.

Jason read "On the Night You Were

Born" and we cried together for this

sweet little thing that was not supposed

...She Made Me a Mommy

(continued)

to live. And then she was here! She was born alive

at 5:11 am and she was 5 pounds 5 ounces of the

most sweetness you could imagine. She did well for

the first few hours but then as time went on we

quickly realized she needed oxygen and a feeding

tube. Judy was there with us and advocated for our

sweet girl. Jason's uncle baptized her and every one

of our family members were there to hold her and

tell her they loved her. It was such an amazing day

of love and togetherness. There were many tears

that day, both of love and uncertainty.

What was it like to take her home?

It was a complete whirlwind. The doctors essential-

ly let us go home the next morning with a warning

that she would probably just die some time in the

next few days. Emmy was sent home on hospice

and she had a feeding tube and was on oxygen. It

was amazing getting to take her home because we

were not expecting to get to have that time with

her but at the same time it was terrifying. We did

not sleep much for the first few days, expecting the

worst. But eventually, Jason said to me, we can't

cease to live our lives and just sit around waiting

for her to die. So we made a promise to her and a

promise to each other that we would live our lives

WITH her.

What was her life like at home?

Her life was full of love and snuggles and music.

She loved to go outside and we had an extra long

oxygen cord so that she could be out there every

day. She had constant visitors of friends and family.

They all loved her and brought her gifts and flow-

ers. She was an extremely loved little girl. All she

ever knew was love.

When did you get the idea to take weekly pictures of her?

My sister Megan came up with the idea and she

made a few of the early signs. We knew we didn't

have the luxury of doing the monthly milestone

photos so for us—each week that she was with us

was an amazing milestone.

Tell us about Emmy.

She was an angel. She was feisty but sweet. She

hated her tubes. She loved music and her mom

and dad. She was one of my greatest blessings.

She made me a mommy.

What impact did her life have on your life and in

your marriage?

She taught us that life can be unpredictable.

None of us are promised a happy ending. But

mostly, she taught us how strong love can be. She

also made us realize that we can get through

anything with love and support. Having Emmy

has strengthened our marriage immensely by

creating this extremely strong bond. When I am

feeling sad and missing my sweet girl, Jason is the

only other person who knows exactly how I feel.

After Emmy died, Jason and I went on a long road

trip together. There we promised each other—

and most importantly Emmy—that we would live

our lives for her and try to make her proud.

Tell us about the fundraiser you organized around

her anniversary.

I was blessed to be elected to the Board of Trus-

tees for BNA this past January. Since then, I am

more in awe of this organization than ever. These

ladies do such amazing work and truly help every

family they support. But the truth is, BNA runs

completely off of donations and there are times

when we don't know if we will be able to continue

our work. I knew that my amazing friends and

family would be happy to help, especially in Em-

my's name so I had the idea to send out some

cards with her picture in it. I sent out sixty-one

cards, each with a different picture of our girl, and

almost everyone has sent me a sweet text message

or card saying how much it touched them. I'm

hoping that we make a difference and help this

great organization.

What would you say to parents experiencing a

prenatal diagnosis?

I would tell them that right now things seem

impossible and bleak but there is hope on the

other side. I would tell them to take what the

doctors tell them with a grain of salt. They have

no way of knowing if or when their child will die.

Advocate for your baby when no one else will. I

would promise them that their baby will change

their life for the better. You will never regret giv-

ing your baby the chance to live and love and be

loved by you!

Page 3 Fall of 2019

A Baptism Kit for Baby: Meet Volunteer Anita Misko

Baptism Kit

Many BNA volunteers come to their work with

BNA through their own experience with prenatal

diagnosis. That is the case with Anita Misko, who

makes beautiful baptism kits for BNA babies.

Anita was inspired to volunteer after seeing the

essential place that baptism held in the birth

plan her daughter and son-in-law developed with

BNA for her grandson, Baby Luke.

Like any grandmother, Anita lights up when she

describes her grandson. Luke was “So precious! …

He was beautiful! One of his most striking fea-

tures were his eyes; when they were open, he was

so alert. Since we didn’t know if he would make

it to term, it was such a blessing to actually meet

him, caress him, sing to him, talk to him...all

special moments I hold dear in my heart. Alt-

hough we had Luke only thirty-two days, I really

feel it truly was a gift from God for the time we

had. I know I will see him again!”

Anita’s daughter Melissa first learned of BNA

from a friend in Pennsylvania following Luke’s

prenatal diagnosis with a complex heart defect.

She was so happy that her daughter and son-in-

law had the resources and support that they

needed to move forward following a life-

shattering diagnosis. BNA offers parents not only

guidance, but peace.

As a grandmother, Anita’s position was often

doubly difficult as she worried not only for the

well-being of her grandchild, but also for the well -being of her daughter. “She is my child and my heart ached for her,” Anita shares. “I wanted to

make it all better for both of them. I prayed for

both and ultimately had to leave it all in God’s hands...this was so difficult.”

The baptism kit Luke’s parents received

was a very meaningful part of the love they

received during their journey. Anita want-

ed to be able to give back to BNA for all

they did for Luke and his parents, and

decided that making baptism kits would be

the perfect way. She hopes that each family

receiving a kit will know that “they are not

alone. Although they don’t know me, they

can be assured each kit has a special prayer

going out for them.”

Anita believes that the last thing parents

need to worry about is figuring out how to

baptize their child, so to make it easy, each

kit includes a bottle of holy water, the

baptismal prayer, and a small hanging

Madonna and Child. “I chose Mary holding

the child Jesus to give the moms a remem-

brance that Our Lady knows the pain of a

suffering child and losing her own Son,”

she explains. “Mother Mary shares their

sorrow.”

Luke’s brief life taught his grandmother

not to take a moment of life for granted,

and to recognize how precious each life is.

No longer does she assume that every

pregnancy will be uncomplicated, and

every time she sees a pregnant woman, she

says a silent prayer that God will protect

mother and child.

Anita, Baby Luke, and Luke’s Aunt Abby

Her advice to parents experiencing what her

daughter did is, “Never lose hope. Every

child is a miracle. Cherish whatever time

you have to hold and love your child. They

will always be a part of you.”

To the grandparents of babies with a life-

limiting prenatal diagnosis, Anita offers this

advice: “Be present for your chil-

dren...praying always for the grace to be

strong for them. It’s okay to be angry; we

have a loving God who is with us always

even when we feel so alone and discour-

aged.”

“I know God has a plan for all of us...and it

is good! I think Luke’s life made me realize

how we are not in control...only He is. The

love and support we received was truly

something I will not take for granted and I

try to be more aware of others in difficult

situations.” She concludes, “Every life is

special...no matter how long you are on this

earth..”

Anita’s baptism kits help to affirm that

reality for every BNA family who is blessed

to receive one.

And even now, Luke’s life continues to

touch those around him, even those who

never had the privilege to meet him in per-

son.

Be Not Afraid

15237 Fred Brown Road

Huntersville, NC 28078

We Need You! If you are interested in supporting BNA, there are many ways you can help. Let us know

what skills you have that could benefit the parents we serve—just use the contact button

on our site and a staff member will respond within twenty-four hours to discuss volun-

teering. Financial donations are always appreciated and can be made at the BNA website

via PayPal.

Who are we?

Be Not Afraid is a private non-profit that provides a free service of case management to

parents carrying to term following a prenatal diagnosis. As a Catholic organization, we

believe that every child deserves to be welcomed, no matter how brief their life may be or

the nature of their disability. Our support is peer-based and parent-centered.

www.benotafraid.net Email: benotafraidnc@live.com Phone: 704-948-4587

B e N o t A f r a i d — C h a r l o t t e , N C

What Parents Say About BNA... “From the very beginning BNA support was like your best

friend holding your hand. They were there for all the ques-

tions, tears, planning, and support we needed. Their gentle

loving guidance was always just a phone call away. We felt

safe with Jaxon's diagnosis working with and leaning on

BNA. They helped us through each task and difficult mo-

ment leading up to the arrival of our son. In the moments,

hours, and days following his death and birth Tracy and Ju-

dy were there to hold us and shine a light into the darkness

of our grief. They continue to bless us with their ministry

and abundance of love. We have felt supported and safe

every step of the way along our journey.”

—Baby Jaxon's Mom

August 8th, 2019

...we can say with confidence, “The Lord is my helper; I will not be afraid.” —Hebrews 13:6