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.



greg and i have tried our best to be as open as possible about our journey with jonathan, partly so that we would avoid some potentially awkward situations. well, last week i had my first really awkward moment since i've "re-emerged" back into life without my pregnant belly. i went into one of my favorite stores where i know most of the ladies who work there, and i just figured that all of them knew about my situation. sure enough, one of the ladies excitedly asked me where my new baby was. i was put on the spot. i fumbled with my words, doing the best i could to gently explain what had happened. as she stood there with her mouth gaping open and tears in her eyes, i realized i probably had ruined her day. and what wasn't the first time and surely won't be the last, i became the comforter.

note to self: don't go there anymore! be better prepared!

well, i still haven't prepared myself for the next time, hence my complete avoidance of a certain sweet lady at the walmart fabric counter today. ( i didn't really need that fabric anyway.) i am completely OK with my story and how it turned out. other people may not feel that same way. i'm just not sure i want to face ruining someone else's perfectly good day when all they wanted to know was how my new baby was doing.

"jonathan is doing great! better than great, actually!" is what i really want to say. because i know he is.


my mom asked me the other day how long i was going to keep blogging here. i have been thinking about that too. i guess as long as i have something to say about jonathan or my time with him, then i will say it in this forum. this was always intended to be his "baby journal" anyway. blogging/journaling has been very healing for me and i'm very glad to share his story with anyone who might read it. i know that reading other moms' blogs, especially T13 moms, has comforted me on my own T13 journey. i pray that perhaps my blog would do the same for someone one day too.

recently, i have been saddened to hear about the deaths of several other T13 babies who i have prayed for and whose stories i have followed on the living with trisomy 13 website. having been there myself just over a month ago, the grief and sadness these families must feel is still very fresh for me. i haven't cried for jonathan lately, but i have cried for these other precious babies. i have also felt joy in hearing how beautiful these stories turned out. the words these moms have written in their blogs and memorial albums have truly resonated with me.

one thing i have learned is that everyone grieves differently. there is no guide for what's appropriate, and i think this is a good thing. i have mentioned in a previous blog that i feel somewhat guilty for grieving more for jonathan while he was still alive than after his passing. i have also realized that there is an expectation of me, of how long i should grieve and what my grieving should look like. i was beginning to think that maybe something was wrong with me because i haven't cried for jonathan in a long time. or maybe, i just didn't want other people to think something was wrong with me because i was....happy.

this past sunday, i was released from my guilt when i read about king david's grieving for his infant son in 2 Samuel 12:21-23:

"His servants asked him, "Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat!"

He answered, "While the child was still alive, I fasted and wept. I thought, 'Who knows? The LORD may be gracious to me and let the child live.' But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me."

there are so many more interesting details to this story about king david and his infant son, but the part that stands out to me is that david knew that continuing his intense grieving would not bring his son back to life. he loved this child, that was apparent. praying for the life of this child was more important to him than eating. but he had accepted God's will for the death of his son. when he said, "I will go to him, but he will not return to me" means that david knew he would eventually join his son one day in heaven. it apparently brought him the peace necessary to carry on with life after the death of this child.

this is me. and i am very comforted to have read this passage.

if you have also lost a child and this is not you, that's OK too. everyone is different. cling to the truth that the Lord promises to comfort His children:

"For the LORD comforts his people and will have compassion on his afflicted ones." ~Isaiah 49:13

"As a mother comforts her child, so will I comfort you." ~Isaiah 66:13

"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow." ~Jeremiah 31:13

"Blessed are those who mourn, for they will be comforted." ~Matthew 5:4

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." ~2 Corinthians 1:3-5


  1. God Bless you as you bless others. It's such a miracle....God blessed you with faith, then with Jonathan. Then, Jonathan blessed all of us who knew him through you....and now you continue to bless others who could both use your words, and those who still pray for you.

    What a legacy. Thank you. Thank God!

  2. When our pastor came to the hospital the night
    Grace was born he chose those scriptures to share about David and his infant baby. "I will go to him, but he will not return to me". It was very comforting. Your store experience was one I can relate to. Mine was at the deli counter I have been avoiding for weeks now at the grocery. The girl that always helps me is due in 2 weeks and I have been able to avoid her up until this point. The counter was busy Sunday and another girl was helping me but the pregnant girl came up to me and asked "where is Grace", I lied, "she's home with her daddy". I justified the lie in my head by saying that is technically true but I know that she thinks I meant Bobby, not God. She is so young, probably 18 or 19, and I can't seem to break it to her before her baby is born, her daughter's name is Faith.

    I still pray for you and Henry's mommy everyday. If you can keep another friend of ours in your prayers I would appreciate it. Baby Finley Grace was born last Friday at 26 weeks. Her mommy was in danger and they had to do an emerg. c-section. They lost a little boy earlier this year. Finley was only 1 lb. 8oz. and 12 in. long. We have been praying hard for her and sure enough, she was taken of the vent. yesterday, breathing on her own at just 26 weeks! Praise God!!

  3. Please don't stop blogging here. I read your story thru the nwf web site and I was instantly touched. I lost my child after she was born at 34 weeks and lived for 15 hours. It wasnt the same as how you lost your Jonathan I still read your blog and I am touched by the passages you put on here. It helps me as well. Thanks for sharing and please don't stop!


  4. Thanking God for your faith and testimony.
    Forgive me, as I have had no experience like yours, but I hope that you don't worry too much about "ruining someone else's perfectly good day". Just as God has worked in your lives through events dramatically different than expected, so He can and will work in others even as your testimony reaches them. So these awkward meetings, though they may seem to bring shock and regret at first, may lead to lasting good as folks' outlooks are changed and challenged.
    Much grace to you both.

  5. I agree with what Darrin, up above said. I came across your site by accident and have been reading all your updates. Please don't stop blogging. Your faith in God and testimony to that is helping others. If you decide to continue blogging, but not here, please let us know where you move to. I enjoy reading all your entries. I have prayed and cried with you. I will continue to pray for your family.


  6. I agree with Penny and Darrin. Your blogging here has made a difference. I know that you have helped so many people. And you have definitely made Johnathan's life purposeful. If you blog somewhere else, let us know.
    As far as being truthful about what happened, I can't imagine what it must be like to have to say something like that, but I know I've been on the other end, shocked at what I have heard. I had a close friend lose her baby at 39 weeks to cord death. I didn't know it for quite some time. I'm sure she didn't want to talk about it. But in her telling me, I learned so much. There's no reason to worry or be ashamed or afraid that you'll ruin someone's day. All you are doing is continuing Johnathan's story, telling his story to others.
    A couple I know lost their son tragically at 15 years old. He was a wonderful boy. Now his story is being told nationwide. He has touched the lives of so many others. And it's all been word of mouth.
    Pass on Johnathan's story. You never know who it will affect.
    Praying for you.

  7. I also agree with the above comments. Your faith has brought me closer to GOD and I can't thank you enough. My prayers are with you and your family daily. You write so beautifully and continue to inspire people. When I am called home, I pray I get to meet your little angel who has touched so many lives.

    May GOD continue to bless you all.


  8. Lauren,
    Mom told me the two of you have been in contact recently and that when they move down maybe we could all get together. I can't tell you how much I would love that... I can't wait. I still check your blog everyday, it is still such a comfort. We are leaving tomorrow for Louisiana to bury Henry, please keep our family in your prayers as you are in mine! Have a great Thanksgiving with your family. -Katie

  9. Lauren,
    Jonathan's story has been such an encouragement and blessing to me. I have both prayed and wept for you often. God has given you the gift of articulating your thoughts and experiences in such a way that gives Him the glory. He has already used your example of trust and confidence in Him to help strengthen my own faith in Him. I'm very thankful for that. I hope that you continue to update your blog as the Lord leads. Thank you for all that you have shared so far.

    "Blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." Jer. 17:7-8

  10. Dear Lauren, please don't consider that it ruins someones day when you share your story unexpectedly. We have no idea the impact that the sudden realization of mortality has on is often life saving, because it leads us to the Maker of heaven and earth. Precious Lady, may the Lord bless you this day, as you have blessed me.