John Paul

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 my life. 

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 me forever.

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 began.

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 anymore. 

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 head on.  

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 arms. 

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 that day.  
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 from heaven.

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.

Back 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.