Friday, 07 October 2016 13:16

My Son John Paul

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When I was halfway through my pregnancy, I found out that our baby had developmental issues.  We had an amniocentesis to draw a sample of amniotic fluid and test the baby’s DNA, and the tests confirmed that a tiny fraction of his #1 chromosome was missing. He was missing some of his arm bones, including his radius and humerus bones, and his right leg was clubbed.

We discovered our baby’s condition, called TAR syndrome, on October 22, the feast day of Blessed John Paul II. We placed our baby under the special patronage of Blessed John Paul II, and prayed for Blessed John Paul to cure our baby miraculously.  After praying for a cure for a month, we had another ultrasound.  I was very nervous and scared for our baby’s health, and I lay awake many nights crying and wondering how I was going to shoulder this cross that God was giving us.

While the technician checked all of his vital organs and tried to take pictures of his arms and legs, I felt a great sense of peace come over me as I watched the monitor.  I had been praying very hard to John Paul II for courage and strength to accept this cross that we had been given.  Then I heard an interior voice clearly say to me, “He needs you to love him in a way that only YOU can love him.”  

It was then that we decided that he would be named John Paul. At this point, I started to realize that God didn’t will a complete cure of his limbs (although I still continued to hope and pray for one) but we found that all of his vital organs - heart, lungs, liver, kidneys, etc. - were all in excellent condition.  Many children born with TAR syndrome have complications with their hearts or other organs that require intrusive surgery during the first year, so we knew that God was hearing our prayers.  

John Paul was born on March 11, 2013 via a c-section by a high risk team of specialists at UVA, and immediately admitted to the NICU.  They determined that he had low platelets (13,000 as opposed to the normal level of 150,000 or more) and for the next eight days, he received platelet transfusions every day through a central line IV that was placed in his chest.

He continued to have transfusions every other day, and then every week, and gradually over time they were able to space them out to two weeks, sometimes more.

John Paul has definitely stretched us in ways that we never thought possible. Being a parent is in every instance a challenge and makes you constantly put your own comforts and needs aside in order to care for your child.  In John Paul’s case we felt that we were now doing this on a whole new level of intensity. 

John PaulI’ve always been one to be totally satisfied in blending in with the crowd, not making waves, and minding my own business.  Suddenly, with John Paul, there is no longer any hope of me blending in.  Everywhere we go he attracts people’s eyes, for obvious reasons.  Surprisingly, though, instead of attracting looks of disgust or fear or repulsion, more often than not, John Paul draws kindness, tenderness, or at the very least, curiosity.  People are drawn to him for the very fact that I expected they would be repulsed.   

The older John Paul gets, the more I feel that it was not I who chose John Paul II as his patron, but the other way around.  When you delve into John Paul’s writings on the human person, there is a beauty and a richness there that the world is just starving to hear.  The answer to the pain of the heart, and the emptiness that everyone seems to be unable to fill, can be found in his beautiful teachings on the dignity of the human person, and the value of the sufferings of mankind. 

John Paul II said, “We are not the sum of our failures or weaknesses.  We are the sum of our capacity to become children of the Father.”  This, I believe, sums up his entire philosophy of the human person.  It is what the world often misses in its quest for happiness and understating why we are here: what is our purpose.

You can read and read all there is to know about the faith and who man is, but until you can encounter your fellow human beings with love, it will never be fully understood.  I believe that’s what St. Paul meant when he wrote that knowledge puffs up, but love builds up.  Knowledge alone will swell our heads, and make us feel important, but it won’t make us closer followers to Christ unless we can put our knowledge into action.  Mother Teresa said, “Love is meaningless unless it is put into action.”  And that means loving the person right next to us, right now.  You don’t have to go across the world on a mission trip to find people to love.  

Our John Paul was not a cross that God gave us to bear with, but a precious, precious gift; more precious than a pearl of great price. I began to realize that he would give us so much more than we could give him.  And he has.  Had we not been given this special opportunity to love a child with special needs unconditionally, we would have missed out on the joy that God had in store for us. It is not always an easy road; oftentimes it is full of frustration and worries and even sadness.  But we don’t walk this road alone, and there is grace and help if only we ask for it.  There is never a day when I am not thankful that God gave John Paul to our family. 

jillstoreyJill Storey lives in Virginia with her husband Patrick and their five sons, who never fail to keep life exciting. Their youngest son, John Paul, was born in 2013 with a rare genetic disorder called TAR Syndrome. He is a constant reminder of God's love and the ability to accomplish great things through Him. Jill graduated with a BA in history from Christendom College.  When she's not doing mom duty, she likes to read books and paint.  You can find her at dulcedomum.wordpress.com and georgiepie.etsy.com.