John Paul's Story
Journey of Hope
I knew exactly how my life
should be and what I was supposed to do. God had
other plans. He kept tapping my shoulder to get
my attention but I didn’t pay attention.
Sometimes we don’t listen the easy way and God
needs to take us on a rocky and difficult journey to
lead us to Him. God’s is good because about
a year ago I found myself on a journey I never expected
to take. A difficult journey that turned
out to be the most miraculous, hopeful experience of
John Paul came into this world
weighing only 2 pounds 1 ounce without any sound or
fuss. He didn’t cry. He could only
open one eye but he looked around the room and looked
into my eyes and I instantly knew every step of
the journey was worth it. I was seeing God’s
love through the eyes of my son. Thirty five minutes
later God called him home and I had to give my precious
son back to Him. John Paul wasn’t meant
to stay with me but instead his short life would change
My husband and I had 3 beautiful
boys. My husband thought our family was complete
but I always had a longing in my heart for another baby.
I secretly thought how nice it would be to have a girl.
I was a little upset with God that he kept giving me
boys. I loved my boys with all my heart but didn’t
He know I always wanted a daughter? When I found
out I was pregnant I was happy. I had a miscarriage
the year before but felt this time was going to be fine.
My only worry was how I would feel if we had another
boy. I was afraid I would be disappointed if it
was another boy and I wouldn’t get to do all the
mother/daughter things. I was sure
that I was meant to have a perfect and healthy girl
and we would go on with our “perfect and easy
“life. At 14 weeks of pregnancy
we had an ultrasound. This was the day my journey
We were told our baby had signs
of significant distress and to expect a miscarriage
within a week. They began to tell us that our
baby probably had some type of “defect”
and we could consider termination but with almost 100%
certainty the baby wouldn’t make it to birth.
We left there in shock and not knowing what to think.
My husband asked me what I wanted to do when we left
the ultrasound room and I immediately knew I wanted
to go to church and pray. I remember sitting
there in shock and telling God, “Okay, I’ll
do whatever you want but please don’t leave me
alone”. When we got home I called family
and friends and asked everyone I knew to begin to pray.
When we returned for another ultrasound two weeks later
I expected to be told that my baby had died but the
ultrasound tech seemed surprised. The fetal hydrops
they had seen a week before was significantly better.
They had never seen a fetus recover from what they had
seen on our previous ultrasound and nobody knew what
to tell us. The baby still had signs that
something was wrong but it looked as if the baby may
survive longer in the pregnancy.
At the end of the ultrasound
they told us, “By the way, we think you are having
another boy.” This was the news I was previously
so worried about hearing and in my arrogance I thought
hearing that we were having another boy was going to
be disappointing or somehow significant. All I
could do was to be humble, pray and thank God for this
boy. I pleaded with God I that I would do anything
to be his Mom. Boy or girl didn’t matter
They offered us termination
but I told them I was Catholic and no matter what, we
would have this baby unless God decided otherwise.
We eventually received the diagnosis of Trisomy
18. The statistics they told us were that 90%
of babies die before age one if they make it to birth
at all. This was devastating news.
I could have listened to the doctors who said he would
be severely handicapped and therefore not worthy of
life. I could have listened to people telling
me that it would be such a burden on me to have a child
like this. Others said how awful I was to allow
a baby to suffer and that it would be much more humane
to abort him. It would have been easy to
listen to this and allow despair to be all the pregnancy
was about . I prayed endlessly as did everyone
around me, and this opened the door to God’s grace.
God didn’t allow me to fall into despair.
God heard my earlier prayers and He put his arms around
me and was at my side the entire pregnancy. Every
time I began to despair he lifted me up and allowed
me to hope. I am not a strong person
yet so many people told me they couldn’t believe
how strong I was. I kept wondering who they were
talking about because I am someone who sticks my head
in the sand at the first sign of trouble. But
somehow, I kept my head high and faced every challenge
My husband suggested we name
our baby John Paul after Pope John Paul II. I was constantly
told that John Paul’s problems were too numerous
and he wouldn’t make it to birth. I prayed
for a miraculous healing but deep inside knew I had
to accept God’s plan. I prayed to meet my
son alive and to at least hold him as he left this world.
Friends had a baby shower for me and it was so nice
to celebrate my pregnancy after all of the difficulties
we had faced. They surrounded me in prayer that
night and little did I know that I would need those
prayers that week for delivery.
At almost 35 weeks my water
broke. It was about8pm and we headed to the hospital.
Our local hospital agreed to deliver us and had prepared
the staff for our delivery. I later learned that
some of the nurses had volunteered to come in to help
care for us. My labor never progressed so they
let me sleep that night. Early the next morning
an ultrasound showed John Paul was sideways and would
be delivered by cesarean section. My doctor was
disappointed as he didn’t think the risk of a
cesarean section was worth it if the baby wasn’t
even going to survive. In my heart however I was
glad because I don’t think our baby could have
survived a regular birth.
A short time later John Paul
entered the world. A deacon from the hospital
was there to baptize him. He wasn’t
breathing as he had a diaphragmatic hernia which did
not allow his lungs to develop. But his heart
was beating and he had one eye open. My husband
was holding him and he appeared in complete peace.
After baptism my husband held him to my face and I whispered
that if the angels were waiting to take him to God that
it was okay to go and that I loved him. There
was enough time for both sets of Grandparents to see
him and for his brothers to meet and kiss him.
Then very quietly and peacefully he died in his Dad’s
It wasOctober 7, 2007, at 9:05am,
Respect Life Sunday at our Parish. He could have
been born on any day but God choose such an important
date to bring him into this world. Throughout
my recovery we met nurses and staff who respected our
situation and cared so compassionately for us and we
are so thankful to them and the hospital for their support
of us. They were truly the hands and feet of God
My sister –in-law is a professional photographer
and took beautiful pictures of him. We kept him
in our room for the remainder of the day. Our
family came throughout the day to be with us.
We had a Catholic funeral mass
and burial for our son. At the cemetery my boys
released blue and white balloon with letters and pictures
attached to their little brother. They slowly
floated up to the sky and out of sight.
I have no regrets over continuing
my pregnancy and having a chance to say goodbye to my
son. As soon as I had a chance to look into his
eyes and kiss him goodbye all the difficulties of the
pregnancy were worth it. I can’t wait until
I have a chance to meet him again. Until then
I know we have a beautiful angel watching over our family
It has been a year since our
son died. On his birthday we chose to celebrate
rather than mourn. We went to the cemetery and
again released balloons with new messages for him.
Afterwards, we went to a fun restaurant to celebrate
all the important things John Paul taught our family.
Most of all we celebrated the importance of life.
I made a memorial garden in
our yard. There are roses and an angel statue.
When I am sad I go there and look around.
On the ground are four stepping stones, one for each
of our sons. John Paul’s stone has
a beautiful cross on it. When I look at it I am
reminded of the journey of John Paul’s life.
Usually I say a prayer, gaze up at heaven and know he
is there, healthy and happy in Jesus’ arms.
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.