Embracing a short life – The Arlington Catholic Herald

Sadye Matula

20-8 hours and 10 minutes. That’s how extended Elizabeth Leon spent with her new child son ahead of he stopped breathing. Minimal John Paul Raphael was born Jan. 4, 2018, with trisomy 18, a unusual genetic ailment ensuing from an more duplicate of chromosome 18. He was 4 lbs and […]

20-8 hours and 10 minutes. That’s how extended Elizabeth Leon
spent with her new child son ahead of he stopped breathing.

Minimal John Paul Raphael was born Jan. 4, 2018, with trisomy 18,
a unusual genetic ailment ensuing from an more duplicate of chromosome 18. He was 4
lbs and 1 ounce.

Elizabeth and her partner, Ralph, hoped to bring him property, but
realistically they understood they in all probability experienced only a couple of times or hrs. So they
soaked in their little boy: the way his shade changed from gray to pink as he
been given oxygen from a transportable tank, and how his minimal fingers grasped their
fingers. They relished wrapping him in his blue blanket, which they’d lovingly
picked out months before, staring into his eyes as they opened for the to start with
time, and investing their first — and past — night time with each other.

Even though the next working day introduced indescribable reduction, the practical experience
finally elicited a profound deepening of Elizabeth’s religion — and a concept
she now seeks to share with other families.


Elizabeth, a longtime parishioner of St. Theresa Church in
Ashburn, was amazed when she initially had the inkling — and before long the
affirmation — she was expecting. She was in her mid-40s in a second marriage
that now involved 9 young children — 5 from her 1st marriage, 4 from
her husband’s. This would be the very first baby from their union.

“While (being pregnant) was surprising, it was a pleasant shock,”
reported Elizabeth, who noticed the child as tangible fruit from her second marriage.

She proceeded with cautious exhilaration, holding her breath that
she would not miscarry. Due to the fact her age designed her being pregnant increased threat, she and
Ralph resolved to get genetic tests accomplished. Early in the second trimester, she
went in for preliminary testing and acquired the information that their youngster had a
large probability of trisomy 18 or 13 — as superior odds as the exam could predict.
They waited for outcomes from the more correct noninvasive prenatal testing
(NIPT) and quickly received term: their boy or girl had an 87.5 p.c constructive
predictive price for trisomy 18.

The news was “really a guarantee that his loss of life would be at a
younger age,” maybe prior to beginning, Elizabeth stated. The couple grappled with the
devastating report, but it wasn’t their initial experience with tragedy.


Elizabeth’s first relationship finished in divorce. The relationship was
later on annulled, but the encounter still left her deeply damage, with 5 distressed
little ones. Ralph’s initial spouse died from most cancers, leaving a bereaved partner and
4 small children.

They met at St. Theresa Church, and their kids attended the
parochial school with each other.

“I imagine God was so sort in planning us in other methods before
this,” explained Elizabeth. “We both equally experienced been in predicaments before … the place we had been
just forced to surrender to one thing that was over and above our handle.

“I just clung to the Lord,” she stated.

Subsequent the prognosis, the health care crew provided termination,
but for Elizabeth that was out of the question. As she headed into the latter
phases of the pregnancy, she had to do the unthinkable — set up for the
probable death and funeral of her unborn child, a boy they made the decision to name John
Paul Raphael.

The few had to “prepare to welcome a little one … even though at the identical
time grieve the toddler we have been not heading to have,” Elizabeth reported.

At the start out of the new calendar year, an ultrasound unveiled John Paul
Raphael was no extended expanding. For this motive and other troubles,
like that Elizabeth had polyhydramnios, an greater amount of amniotic
fluid swelling her stomach, the professional medical team recommended an induction. Elizabeth and
Ralph scheduled one particular for Jan. 9.

“The only purpose to wait around was that I was concerned,” reported Elizabeth.
“I wasn’t prepared to confront his dying nonetheless.”

As it would take place, “God took the alternative out of our hands,” she

Elizabeth’s h2o broke Jan. 4 at 9 a.m. She was rushed to the
clinic for an crisis cesarean section. By 10:30 a.m. the little one was born —
grey, silent and unmoving. They feared the worst.

Performing promptly, Ralph poured holy h2o from Lourdes, France, and
baptized him — and minimal John Paul Raphael breathed.

“It was so wonderful that the grace of baptism just introduced him
to us so powerfully in the working room,” reported Elizabeth. “God’s grace was so
present, it hung in the space.”

With the buildup of amniotic fluid released, Elizabeth claimed, “I
could ultimately get whole breaths of air. That is particularly what it felt like
emotionally and spiritually. We had not breathed for 35 months and 5 times. We
could finally all breathe together.”

Rejoicing, the relatives set about celebrating the time they experienced
with the latest member. John Paul Raphel’s brothers and sisters and grandparents
collected in the healthcare facility home, having fun with a tunes playlist they picked out forward
of time and a particular cologne they sprayed on his clothing and toys to
associate with him. They cut a lock of his hair and recorded his heartbeat.

In the afternoon the following working day, despite the oxygen tube, he
commenced agonal respiration, or gasping, a purely natural reflex when the brain is not
having ample oxygen. The relatives who was there sang to him, a ultimate lullaby,
and in the hour he breathed his final.


In the months subsequent, as Elizabeth grieved, she felt an urge
to publish, to start a blog site as an outlet. She “found so substantially strength in reading
other people’s stories,” she reported. “I clung to other peoples’ stories.”

Nevertheless, numerous of the stories she encountered experienced a starkly
various ending.

“Most of what I was studying was not richly Catholic,” she said.
“People who acquired the prognosis, beloved their infants and terminated anyway.”

She mentioned she “couldn’t uncover a lot of narrative about loving and
welcoming a little one that was heading to die in the Catholic community. We just
haven’t stuffed in the gaps.”

It wasn’t until eventually early 2020 — two yrs right after his demise — that she
began to critically contemplate and get started work on a ebook, primarily based on her blog
posts  from the earlier two a long time.

“I eventually just listened to the promptings of the Holy
Spirit,” she claimed. “I want to provide a book to display ladies primarily just why it’s
value it.”

Her e book, “Let On your own Be Liked: Significant Classes From a Minimal Daily life,”
chronicles her practical experience from finding out she was pregnant, to the information of the
likelihood of trisomy 18, an emergency birth, a celebration of lifetime, and the
soreness of death and grieving. The e-book was revealed this thirty day period and delivers a uncooked
and personal seem into a family members looking for to dwell out their Catholic religion amid

“ ‘Let yourself’ be loved was a information the Holy Spirit introduced
me,” she reported. “(John Paul Raphael) allowed himself to be cherished. He didn’t have
to do anything at all. What I have discovered in the four many years considering the fact that John Paul died was
that concept was for my have heart. It was an invitation to enable myself be

She dreams to “accompany women via the process” and ideally
journey with them to a position of therapeutic as a result of her message, her story and probably
workshops, a little something she’s still operating out.

“That grief cracked me open in a way that uncovered spots of my
heart that desired God’s like and notice,” she said. “The grief can be a
pathway to living life in a much more gorgeous way.”

Bartlett can be attained at
[email protected]

Find out much more

Go to elizabethleon.org.



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