I
always knew I wanted to work with children… It wasn’t until much later that I
realized how much I wanted to work with mothers.
I
began my career working with children from birth to age three with special
needs and developmental delays. The program that hired me was designed
around this fundamental idea: parents are the most important individuals in a
child’s life. Involve and empower a child's parents in everything you do for
the child, because they have the power to connect with and support their child
in a way that no therapist or educator ever can. They are the most important
person in that child’s world, and if you truly want to help that child, you must help their parents.
Throughout
my four years as a therapist working with the very young patients in this
program, I had the honor and the privilege of working closely with their
families. While I worked with some fathers and grandparents, the majority of my
work was carried out with mothers. It was a difficult job; a stressful
job; a beautiful job. It required confidence and independence and a level of
comfort I did not yet have in my own skills. My first year was overwhelming…
But slowly, with each heart-wrenching or incredibly trying case, I grew as a
therapist, a professional, and as a person.
At
the beginning of my career, this level of maternal involvement terrified me.
How could I to give a mother advice about how to raise a child? Certainly, I
had the education and skills to make therapeutic recommendations… But how would
a mother ten years older than me ever take me seriously? How would she ever
believe that I truly did know enough to help her child? I wasn’t a mother. I
was only 21 years old. I still lived with my own parents. How could I be an
authority on anything related to parenting a child, let alone one with special
needs?
Much
to my surprise, these women welcomed me into their homes not reluctantly, but
with eager and open arms. They put their trust and confidence in me in a way
that made me feel both honored and absolutely terrified. They sought out my
opinions on dealing with problem behavior; sought out my advice regarding their
child’s sleep troubles; shared their sadness and frustrations with me. I
grew to appreciate and love the mothers, just as I loved their children.
These
women allowed me to be not just their child’s therapist, but a part of their
lives. I have welled up with tears upon hearing the cry of a beautiful, feisty
little girl for the first time, after knowing and loving her throughout the
first two years of her life with a tracheotomy tube that rendered her silent,
and I have sat in a doctor’s office and seen a mother's tears fall and heart
shatter upon hearing the word “autism” for the first time.
These
mothers granted me the gift of sharing in their joys, trusted in me enough to
witness their pains, and in giving me the honor of both, taught me more than
they will ever know.
When
I began volunteering at Casa Jackson last year, I had few opportunities to meet
the children’s mothers. I fell in love with the frail babies and toddlers;
spend my days hugging and holding and rocking and comforting and more or less
“playing mommy” to our patients. It was easy to forget that each child had an
anxious, eager mother at home that was desperately missing her child.
And
then I accepted this position.
How
to explain or describe what I feel for these women; to express my level of
respect and admiration for them; to articulate exactly how much I love them...?
How fiercely protective I feel over them? How my teeth clench
and blood boils when I hear visitors or volunteers making assumptions or
judgments that these women are doing anything less than everything they can?
These
women are mothers in a country in which I find it difficult, frustrating, and
sometimes terrifying to even be a woman. They are bringing tiny babies into a
very uncertain, dangerous place and trying desperately to protect, nurture, and
raise them as best they can given the unimaginable circumstances they
face.
Many
watch their devoted husbands suffer through 16 hours of backbreaking labor six
or seven days a week just to keep a dirt floor under their feet and a laminate
roof above their head.
Some
watch their children starve as their husband spends all the money he earns each
day on liquor.
Many
struggle to shield their children from the angry fists that often follow,
without any hope of shielding themselves.
Many
know the pain of losing not just one child, but two, or even three, because
they had no money to purchase the dose of antibiotics needed to stop their
child’s diarrhea.
Some
are raising and loving babies that were conceived when their own father, uncle,
or cousin forced himself on them.
Even
the mothers who are lucky enough to have a caring husband and decent resources
face challenges that most of us can’t imagine, including poor access to basic
health care, emergency services, and life-saving medicines for common childhood
illnesses. A child with any sort of medical or special need here is at the
mercy of the free public hospitals, where the care provided is usually poor and
often dangerous.
*****
There
is Ana, mother to Edy. Ana and her husband Erick desperately wanted children.
They tried and tried and tried to conceive, but to no avail. Ana went to a
doctor who diagnosed her condition and concluded her sterile. Ana and Erick
were heartbroken until miraculously, Ana conceived some months later... Not
just one little life, but two.
As
most women do, Ana labored in her home with the help of a midwife. Their
gorgeous, healthy daughter was born first. Their beautiful, joyful son came
next, but suffered without oxygen for several minutes as Ana experienced
complications during labor.
Edy
was admitted to Casa Jackson in October, severely malnourished but with a
persistent smile stretching across his chubby cheeks.
I
remember the day I met Ana. She and Erick were visiting Edy. Erick sat
cross-legged on the floor, and Ana sat next to him, leaned up against his
shoulder. Their heads were close together, foreheads practically touching, as
they watched little Edy sleep in his father’s arms. Ana gently rubbed his head.
Erick held his infant son’s hand and raised it to his lips to kiss him every
few minutes. It was one of the most beautiful displays of tenderness and
familial unity I have seen in the past year.
Two
weeks later, shortly before Edy was to be discharged, his twin sister, healthy
save for a persistent cough that had recently worsened, passed away
unexpectedly. The precious little daughter that Ana had longed and wished and
prayed so long for- gone. She begged us to keep Edy at the hospital longer,
terrified of what could happen if he fell ill as well. As she grieved for her
daughter, she worried for her son.
During
Edy’s stay, I began to notice that something was not right. He was sweet, and
happy, and handsome, but his strength and coordination were not where they
ought to be. He was late in reaching his milestones. He had all the markers for
cerebral palsy or a similar disorder.
In
the absence of a “better person for the job,” I had to share my concerns with
Ana directly. She listened intently as I stammered through an explanation of
the possible results of Edy’s brief period without oxygen; normal child
development and where Edy's skills fell; what this could mean for his future. I
kept my words gentle. I still felt awful.
Ana
had one question: “how can I help him?”
During
Edy’s stay and throughout the 7 months since his discharge, I have had the
incredible pleasure of working with Ana and Edy together. Ana is soft-spoken
and says little, but watches her small son work hard to learn and develop with
a joy and pride that is matched only by the worry that shows in her face when
she talks about the fever he had for almost a month straight, and how the
family recently sold every item of furniture they own, save for one bed, to
purchase the antibiotics he needed to fight it.
Ana
listens intently, watches even more intently, and shyly joins me in learning
new techniques to help her son grow and develop. Edy’s slow but steady progress
is a testament to Ana’s faithful follow-through on all of his
“exercises.”
At
the end of our last visit, Ana went into the room that she shares with her son
and husband and returned with two picture frames. A gift for myself and the
social worker; a quiet, wordless “thank you” for coming- for caring- for simply
trying to help.
For reasons that I will never fully
understand, Ana grants me, a foreigner several years younger than her who is
culturally worlds apart, who speaks her language about as well as an 8-year-old
girl, the trust to not only share in the joy of watching her precious son, her
only surviving miracle, grow and learn, but to be an active part in it.
*****
There
is Monica, mother to Jorge, who lived with us throughout her son's recuperation
at Casa Jackson. In a culture where many women are raised to be meek and mild,
Monica is outgoing and outspoken. She missed her two older daughters, being
cared for in her absence by her own mother, but couldn't fathom leaving her infant
son anywhere alone.
Monica
was a wonderful presence for all of us. She was friendly with volunteers,
helpful with the nurses, playful and attentive with the other
patients. Monica has a sharp wit you'd more likely expect from a mother
raising children in New York than in the poor village she currently lives in
with her husband and three children. She kept us all laughing.
Every morning, Monica got Jorge dressed and completed his outfit with a
hat. Sometimes a baseball hat, sometimes a beanie. As Monica swept and mopped
each morning, she carried Jorge, little backwards baseball cap on his head,
bouncing along behind her in a blanket on her back. We used to joke that he was
our "little homeboy."
When
I left each night, wrenching myself from Alberto's tearful, wailing arms,
Monica winked and took him from my arms, off to some fun make-believe game or
distraction, assuring me that she would take care of him. Her validation that
yes, this little boy and I shared this bond and yes, he was in need of some extra
love and attention during those times, meant almost as much to me as simply
knowing that throughout the evenings and nights, a loving pair of arms was
always there to hold him.
When
the boy I've been seeing began visiting Casa Jackson, Monica didn't hold back.
"He's going to be a good father someday, and by the way he looks at you, a
good husband, too." I laughed and struggled to explain the differences
between our cultures and upbringings that prevent me from feeling like I
should, or even want, to have any of those things in the near future, let alone
with someone I've only recently met. Monica waved my words aside with her hand
and smirked. "I give it one year before he changes your mind. And I’m
coming to the wedding."
After
a few more minutes of playful banter, I gave into her questions about why I
myself couldn't imagine ever being ready for a husband or my own child. For the
first time, I told a mother about my past. I wasn't the one asking the hard
questions; I was answering them. I told her about the man I almost did marry;
the drug addiction; the emotional and verbal abuse; the betrayal; the loss; the
anxiety that still plagues me whenever I begin to care about someone.
As
I spoke, I worried- what is she going to say? How can I expect her to
understand, when she's faced so much in her own life? I'm just another gringa
who has had it easier than her, complaining about my own 'hard lot.' When I
finished telling her the whole sordid story, she let out a heavy sigh and gave
me a sad smile. "They're not all like that. I promise you, they aren't.
There are good men that wouldn't ever lie to you, do drugs, yell at you, or
leave you like that. Jorge's father is a good, good man. I know I'm lucky. And
you're going to be lucky, too. You take care of everyone here... You need
someone to take care of you.
And when you're ready, you will have a baby. You're already a mama
inside. You can't hide it."
Monica
and Jorge left last week. Jorge was scheduled for a minor surgery in one of the
public hospitals. Monica kept her smile and wit flowing all morning. It wasn't
until she stood at my office door to say goodbye that the tears began to fall.
"Miss,
miss, thank you for everything... Thank you. I'm so scared, I'm so scared, I
don't want to leave, I don't want anything to happen to my baby. He was so sick
when I came here and now he's so healthy and what if I can't keep him healthy
at home and he gets sick again and something happens to him and this surgery is
small but it could go wrong and I'm just so scared and I don't want to lose my
baby and what am I going to do without you all I don't want to say goodbye and
I miss my girls and my husband but I want to stay with all of you where I know
my baby is safe and healthy and thank you for everything, thank you, thank
you..."
I
hugged her tightly and fought back my own tears. I can't promise that Jorge
won't get sick, no matter how hard she tries. I can't promise that the hospital
won't commit some awful error during what would be a routine procedure in a
different country. I can only promise that we will always be here.
*****
There
is one mother whose story has been too painful to tell.
Maria
arrived at Casa Jackson with her husband and 10-year-old son late one Friday
morning in February. Frank's father Juan carried him inside. Frank was pale,
frail, and trembling. He was tall, but impossibly thin. He rested his head on
his father’s shoulder for support, too weak to lift it on his own.
Maria
wrung her hands together and looked down at her lap as she and her husband
recounted the story of the nightmarish 2 months that had preceded their arrival
at our hospital.
Frank
had been fine; a healthy, happy boy who loved to go to school and play fútbol
with his friends until he began having headaches several months prior. The
doctors at one of the public hospitals had diagnosed him with hydrocephaly and
placed a shunt (Frank did not have hydrocephaly). Immediately following the
surgery, Frank deteriorated. He could no longer eat without vomiting; he could
barely keep a few spoonfuls of chicken broth down.
He
lost weight quickly. Their once vibrant, energetic young son became sicker by
the day. He came down with infections requiring expensive antibiotics that Juan
worked from before sunup until 10 or 11 each night to afford. They brought him
to clinic after clinic after clinic, begging someone to help him. Each doctor
told them the same thing: “He’s dying. Just accept it and let him go.”
Maria
and Juan couldn’t let it go. They couldn’t give up on their child; they
wouldn’t. As his infections spread and worsened, they ate one meal a day-
sometimes less- and Frank’s father began to sell the family’s possessions, one
piece at a time. The tables and chairs. The appliances. The kitchen cabinets.
Their once full home (Juan was a carpenter who took pride in his beautiful
craftsmanship and had lovingly made a number of pieces of furniture for his
small family) grew emptier by the week. Despite the antibiotics, Frank remained
ill. And still, there was no help.
When
Maria finished telling me her story, she took a deep breath, looked up at the
ceiling, and then turned her eyes to me. Chin trembling, she begged me: “Please help my son. I have only him and his
sister. I can’t lose my baby.”
I
told Frank’s parents that he could stay in Casa Jackson, that we would do
everything in our power to help him. We wouldn’t give up on Frank. His mother
cried and hugged me and offered to do our washing, our cooking, our cleaning;
anything at all to repay us. I told her that while she was with us, her job was
simply to be with her son. Maria and Juan couldn’t seem to believe that there
was no debt to be repaid, whether financial or otherwise.
Frank
was in Casa Jackson for only three days. He suffered a series of seizures and
needed to be rushed to an emergency room, where they refused to feed him or
give him medicine because “he was going to die, anyways.”
His
parents held onto their hope. We held onto ours. It was a heart-wrenching week.
We tried so hard to find a solution; to find some way to help. We watched Maria
and Juan as they watched their son fight for his life.
No
one knew what the outcome would be; no one knew what his chances were. We
tried. We all tried. It was not to be.
Frank
was sitting in a neurologist’s office in Guatemala City with his father,
waiting for a last-minute consult pulled together through sheer determination
and a tremendous amount of teamwork, when Frank began struggling to breathe. He
whispered to his father that he wanted to go home. He wanted to hug his mother.
They rushed home.
Frank
passed away an hour later, surrounded by his mother, father, sister,
grandparents, aunts, uncles, and cousins. His father invited us to the home to
pay our respects that afternoon.
When
we arrived, Frank’s family embraced us and cried as if we had known each other
our entire lives, and not just that one short yet very long week. His father
tearfully embraced us, thanked us, and recounted Frank’s last minutes as we,
the team that could not save him, struggled to retain our composure. His
grandmother, her head up to my mid-chest, wrapped her arms around me and
repeated over and over through her tears, “Amy,
my grandson... my grandson...”
Maria
pulled me into her arms and sobbed without abandon. "My baby, my baby, my baby, my
baby. He’s gone. Oh Amy, Amy, Amy... Amy, my son is gone." She clung to me as if I were still her
last hope, as if Frank was living still, somehow, in the hope that I stubbornly
held onto, after much of the team had accepted that yes, perhaps Frank was
going to die, that made me so determined to push and fight for answers and a
chance until the very last moment.
I
held Maria and whispered my “sorries”
through both of our tears. Sorry for her loss; sorry for my failure. Sorry that
I watched a wonderful, dedicated mother lose a child that didn’t need to die;
that would probably have survived had his family had the money to afford the
costly but necessary private medical care; sorry that no one shared his parents
hope sooner.
To
hold a mother while she cries for the child she has just lost (a child you were
entrusted with but unable to save), is to hold an immeasurable pain and grief
in your helpless arms. It changes you. I just can’t explain how.
*****
These
are only a few of the mothers I have come to know and love in this past year;
mothers who have granted me the unspeakable honor of sharing their joy and
their grief. I can think of few things in this life that I hold more sacred
than their acceptance, their confidence, their trust. Some I know well; some I
meet only in passing. I am overcome with love and respect for them all.
To
the mothers near and far who have accepted me, trusted me, and allowed me to be
part of their children's lives... to the mothers who have taught me more
about life and myself than I could have ever taught them about their children's
development... to the mothers suffering in a thousand unthinkable ways, who
remain determined and strong... and of course to my own mother, thousands of
miles away-
Thank you.
