This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


the ministry of sorrow

a few short months ago, i sat inside a church on a beautiful afternoon and watched a dear family – friends of ours - grieve for their infant daughter. i had never been to a funeral for a child before. i was there listening to the father speak from the stage for several minutes before i realized the tiny white box up near where he stood was the casket. it was a breathtakingly sad sight. there should be no need for caskets that small.

a few nights later, greg and i brought them a meal and spent some time talking about their daughter and their experience. we were completely astonished by their strength. i remember both of them talking about how as heartbroken as they were, they were still submitted to and believing that the Lord’s will for them, for them to lose their daughter, was part of a much greater plan. in fact, at the funeral at least two people approached the alter and prayed to receive Christ.

once our news about jonathan broke, this particular friend of mine was one of the first people to contact me and offer support. while it has been a true blessing to be surrounded by our wonderful friends during this time, to be able to confide and talk to someone who has been right where i am just recently…someone who can truly empathize…has been a God send. there is a certain comradeship in sorrow. i learned she also volunteers at the hospital and is on-call for support of parents who have lost an infant. she has bravely taken her grief and turned it into helping others. she has been given a ministry.

she is not the only one who has experienced significant loss to reach out to me. unfortunately, it has become obvious to me that losing a baby is more common than i ever thought. ladies i have known for years have reached out to me and told me about their similar experiences of which i was unaware. and people i have never met have sent me emails and cards, sharing their own personal stories with me and letting me know they are praying for me and available to me if i ever want to talk.

one of the more touching emails i have received was from a woman who had come across our album on the “living with trisomy 13” website. she congratulated me on expecting a boy and said that when she was very young, she too had a trisomy 13 baby. she then explained that she had been forced to have an abortion. she encouraged me to cherish every moment i have with jonathan and wished the best for us.

i could completely sense the sorrow and regret that this woman still experiences through the tragic loss of her baby. it was apparent just in the context of her visit to this particular website and reading our story, years after her loss. i was so touched that she took the time to encourage us and bless us. also, the fact that she congratulated me substantiated our apparently mutual belief that there was still something to celebrate in jonathan’s life in spite of his death sentence.

i surely didn’t think of ministry when jonathan was diagnosed. like i have explained before, it took a couple of weeks just to get over the shock of what is to come for us. i can barely think of ministry now, since we are still in the very midst of our trial. i confess that most of the time i am an unwilling participant in my worst nightmare. i think of moses’ reaction when the Lord instructed him to rescue israel. “O my Lord, please send someone else…”

however, it has become clear what the Lord is desiring of me:

“Comfort, comfort my people, says your God.” ~Isaiah 40:1

Store up comfort. This was the prophet Isaiah's mission. The world is full of hurting and comfortless hearts. But before you are competent for this lofty ministry, you must be trained. And your training is extremely costly, for to make it complete, you too must endure the same afflictions that are wringing countless hearts of tears and blood. Consequently, your own life becomes the hospital ward where you are taught the divine art of comfort. You will be wounded so that in the binding up of your wounds by the Great Physician, you may learn how to render first aid to the wounded everywhere. Do you wonder why you are having to experience some great sorrow? Over the next ten years you will find many others afflicted in the same way. You will tell them how you suffered and were comforted. As the story unfolds, God will apply the anesthetic He once used on you to them. Then in the eager look and the gleam of hope that chases the shadow of despair from the soul, you will know why you were afflicted. And you will bless God for the discipline that filled your life with such a treasure of experience and helpfulness. ~Selected

God has shown me during this time is that he is an incredible comforter himself. he comforts me through his promises, through the love and support of our family and friends, and even through the words of strangers. he knows exactly what i need, but not just because he is God. it’s because he can completely relate: he knows exactly how it feels to have a son die.

"Blessed are those who mourn, for they will be comforted." ~Matthew 5:4
"He heals the brokenhearted and binds up their wounds." ~Psalm 147:3

i truly desire that greg and i will one day be at the point where we can minister to others in their grief. we still have a long road ahead of us, full of things we must learn and experience first. but it is a goal of ours.

"Heaven rejoices when you go through trials with a singing spirit. Your Father's heart is cheered when you endure the test and do not question His mercy. Be like a beacon of light and His own glorious radiance shall shine through you and Christ Himself will be revealed." ~Francis J. Roberts

pray for us that we would be sensitive to God's leading as we begin to embrace what His vision might be for any future ministry.

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