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.


another lesson from the journey

i wanted to share another aspect of my personal journey with jonathan, but at the risk of appearing completely shallow. however, i feel that i should still write about my experience and hope that women out there reading this can relate in some way or another.

i used to be a runner. not just a jogger, mind you, but a runner. it was something i took pride in (can you tell?), having raced locally and in school events literally all my life. it paid my way through grad school. it was my stress relief. it was my main source of exercise and kept me fit. i even ran a marathon right before i became pregnant with kate. yes, i am one of those people who actually enjoy running for fun.

however, i am not a naturally thin person. i don't even look like a runner. i struggled with my weight most of the time i was in school and only really became at peace with my body after the college years. the benefit of running i most enjoyed was that it helped me maintain a healthy and lean figure. i think most women can relate to the struggle of feeling good about how they look and being fit.

so now, after confessing how important it is to me to maintain my "figure", i want to show you how much the Lord has been working on me with this.

we are celebrating 32 weeks with jonathan this week. i am 32 weeks pregnant with a baby not expected to survive. jonathan's condition is not obvious from the outside. in fact, my body is going through all the normal changes because it just knows what to do when pregnant. my belly is large. my bones ache from my body preparing to give birth. i am getting quite uncomfortable now. for so many other moms out there, this is just part of it. it all becomes worth it in the end when you are holding that precious bundle of joy. for me, i don't know if there is that same "reward" at the end of this. and if i told you i didn't think about this when we were diagnosed at 17 weeks, i would be lying.

at 32 weeks, i am doing OK...still no swelling and i haven't experienced any more problems with my blood pressure lately. however, i am gradually experiencing more and more pain when jonathan moves. i have a feeling it is due to the lack of amniotic fluid. there is just not much to cushion the rest of my insides from his little kicks and stretches. i am having a harder time being on my feet since the pressure of him being pulled down by gravity sometimes takes my breath away. there is also a nerve that runs down my inner right leg that is getting crushed occasionally, sending shockwaves through my body.

on top of that, my belly is extremely tight and hard as a rock most of the time. it is very obvious where jonathan's head is at all times (still just below my ribs) and if i even slightly touch my belly there, it feels like a deep bruise.

but i don't tell you all this to make you feel sorry for me. yes, i'm uncomfortable, but i'm still thankful for it all. for when jonathan moves, it brings pain and reassurance all at the same time.

tomorrow we have our final specialist's appointment in pensacola. i remember at our last visit in september, after finding out all that not-so-great-news, that when the receptionist was making our appointment for october 7th, i honestly did not think we would make it that far. and here we are!

so tonight i was thinking about our visit tomorrow and suddenly i was reminded of a feeling i got a couple of months ago when i was wondering about how long i would get to keep jonathan with me for.

i was only 22 weeks at the time and i remember learning about a young girl going into labor with her trisomy 13 baby at only 23 weeks. it caused me great concern, because although i knew that it was just normal with these pregnancies, i was not prepared to lose jonathan that early. and while i was in the bathroom getting ready one morning (the only place i can be alone!) i remember this feeling, like God Himself was telling me, that i would go the entire way in my pregnancy.

i couldn't figure out why i felt this way, because i wasn't even sure that was what i wanted back then. at times during this journey, i have felt that perhaps it would be "easier" on me, emotionally and physically, if i didn't go all the way to full term.

but at that moment, in the quietness of my bathroom, i felt like reaching full term with jonathan was what God was requiring of me. my body was "not my own anymore." for me, even giving up my own body for God's purposes was necessary.

it was a moment in which i realized that this cup would not pass from me too easily. it was a moment in which God was requiring me to let go of something i placed too much importance on, in order that He could accomplish something much greater with it. i must die to myself. Lord, i do this for you.

even when my belly feels heavy and uncomfortable. for you, Lord.

even when my back aches and my feet hurt. for you, Lord.

even when i knew there was the possibility of my skin scarring from stretching too much. for you, Lord.

even when i knew i would face complete exhaustion. for you, Lord.

even when i gain weight that will eventually have to be dieted off. for you, Lord.

even when i know i will experience pain during labor and birth. for you, Lord.

even when i know my milk will come in and i won't get to nurse my own baby. for you, Lord.

even when i know i will not be back to exercising for several more months. for you, Lord.

and especially when it means that there may be no baby to bring home in the end, after all of this.

for you, Lord.

so here i am, with another month to go. it will probably only get more uncomfortable from here on out. but i know i will enjoy every moment i have with jonathan.

and if i had to, i would do it all over again. the life of my son and the lessons i've learned from this journey are worth it.


  1. Thank you, Lauren. You are an example to follow because you allow Jesus to shine through you. Thank you for being the vessel that God is using to reach others. I pray that many come to know Jesus through this experience.

    My prayers are continually with you and your family.

    In Christ's love,

  2. How blessed for Jonathan that God chose you to go this journey with him. There are so many gifts from God that don't get the chance to feel the love that you and your family are giving this child. Our family had a child born with spina bifida years ago and we only had her for 3 years. But thank God we had that special angel in our lives. She was a true blessing from God.
    My prayers are with you and yours and thank for sharing this most inspiring journey with us.
    May you continue to find peace and strength from God.

  3. Lauren, I completly understand the struggles you are facing. In terms of the reward in the end. It may not be the same, but it is so worth it! I had also wished and prayed that my pregnancy would end earlier because I thought it would have been easier. I know things worked out the way they were meant to be. Our angel Karrae blessed our lives so much, even though it didn't work out the way I hoped. It has been 3 weeks since she returned Home and I am learning everyday. I am learning about myself and more about my faith. Karrae has taught me so much and I will continue to let others know what she has taught me. I continue to pray for you, your family, and the baby as you are coming closer to a journey that is not ending, but just beginning. It is a beginning for all of you and in time, you will understand. Every day has its ups and downs just as you are experiencing. And eventually some of the answers will come if you are there to greet them.
    Mommy of angel Karrae

  4. I've been following your story for awhile. I first saw your story on where your sister posted a comment about your journey. I am so sorry for what you have to go through, but I can't help but feel SO inspired by your strength and faith. I cannot even imagine going through all that. I had my baby at 26 weeks and had a 90 day nicu stay and still cannot even compare the pain to what you are going through! You are a true inspiration to me!!

  5. 4th grade: you asked me to be your running partner. You said it so matter of factly. It was the first thing you said to me after we becmae friends and I remember thinking, I was happy to have a friend like you and if that meant I had to run with you to keep you I would (even if we did have our little cat fights). Well I'm really glad we remained friends all these years and your strengths have encouraged me, not just now, but always. I am blessed to have a friend like you and I believe God is watching over you and Jonathan very closely. 37 sounds like a good number and I pray you will withstand the trials of the next 5 weeks.

  6. Lauren, as always your transparency is so refreshing. Thanks for sharing your thoughts and feelings about your body image, running, thinness, etc. I can completely relate. I know you wrote this blog entry not long before the Lord decided it was time for Jonathon to make his appearance here on earth before moving to higher ground with the Lord. Even though the pregnancy was not full term, I believe the Lord's purposes in your life through this experience were indeed brought to full term. And your blog--so refreshing, so real, so inspiring--can now yet again offer your readers a glimpse at how, many times, His ways are higher than our ways, and His thoughts higher than our thoughts. In our hearts we plan our course, but it's the Lord who directs our steps.