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.

8.20.2009

difficult tasks

it’s a beautiful spot. on this particular day, with the backdrop of dark grey clouds, all of the trees, shrubs, and grass seemed so much more green and full of life. the place smelled of freshly cut grass. there is a wonderful oak tree just above that provides plenty of shade on a sunny day. wind chimes hanging nearby tinkle in the wind and birds chirp happily in spite of the coming storm. i love this spot and hate it at the same time. this is the spot where we will bury our son.

this past week, greg and i made a majority of the funeral arrangements for our baby boy. as difficult and emotional a task as it sounds, we actually felt quite a peace about it all. neither greg nor i even shed a tear during the process, although several times i felt like i was close. there was one moment, as we sat in a very cold room surrounded by displays of urns and coffins, that as the funeral director casually described how they would pick up our son from the hospital and bring him back there, i almost lost my composure. otherwise, i felt very strong; protected from the devastating grief and pain that we could have experienced in this situation.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~Isaiah 41:10

"My presence will go with you, and I will give you rest." ~ Exodus 33:14

"Never will I leave you; never will I forsake you." ~ Hebrews 13:5

i also had a heightened awareness of jonathan’s little jabs and kicks while we were there. i did feel a little guilty about planning a funeral for a baby who is very much alive. i know it must be done, but it was like he was reminding me the whole time, “but mommy, i’m still right here with you!” i wish i could tell him that everything we are doing for him is because we love him.

later that evening, i received an email from a friend. she had passed my car on the road as i was turning into the cemetery entrance, and though she wasn’t even sure it was us she saw, she felt led to pray for us right then and there. as i read her message, i was blown away, and finally, the tears came. i truly believe that God planned for her to pass me at that very moment so that someone would be praying for us while we were there. i know our strength during that time was not something we could have mustered up ourselves. again, God had provided, and had gone before us.

"I will answer them before they even call to me. While they are still talking to me about their needs, I will go ahead and answer their prayers!" ~Isaiah 65:24

“With all prayer and petition pray at all times in the Spirit, and with this in view be on the alert with all perseverance and petition for all the saints [Christians] ~Ephesians 6:18

jonathan update
yesterday, we had a somewhat uneventful doctor's appointment. no ultrasound this time, so no baby measurements to report. jonathan is still moving around quite a bit and his heart rate averaged 137 BPM while we were there. oh, and i have gained 10 pounds in 2 months! that's 13 pounds total now, at 25 1/2 weeks. there is no doubt our little guy is growing. i don't blame all the weight gain on him, but he DOES like chocolate, something i couldn't eat at all while i was pregnant with kate.

we also discussed the birth plan/ jonathan's care with our doctor. right now, from what we know of jonathan's complex heart abnormalities, if he is born alive, we are only going to provide "comfort care" for him. this means that we will just make him comfortable and love on him during his final minutes or hours. the other option is to submit jonathan to multiple open heart surgeries beginning moments after birth. i have done quite a bit of research on this, since we are (obviously) completely responsible and accountable for making decisions for jonathan's care if he is born alive. apparently, there is not much of a chance that jonathan would survive such a surgery after birth (as little as 5%) and even if he did survive the surgery, he still faces many more difficulties and surgeries from his other major organ abnormalites that we currently know of. we certainly don't want him to suffer, and we feel that submitting him to any sort of surgery would risk his comfort and possibly shorten his life instead of lengthen it.

needless to say, it has been a difficult week for us to have to discuss these type of decisions for our child. please pray for us, that we would be granted wisdom in making the right choices. please pray for our doctors, nurses, and other medical staff, for wisdom and sensitivity in their care and interactions with us now and in the future as we head towards delivery in the next 2-3 months. also, perhaps in caring for jonathan, that maybe their hearts would be changed in someway. please also pray that God will continue to provide all the grace and strength we need daily in order to be thankful for what we have been given, and to surrender any grief or pain to Him who promises peace in return.

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." ~Philippians 4:6-7

6 comments:

  1. I was told by a friend about your blog. I have a 3 year old son with Down Syndrome, so I am very sensitive to "special children." I am inspired by your strength and pray for guidance while you make tough decisions.
    -Danielle Tharpe
    scottdanitharpe@aol.com

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  2. Your life and your story are pointing back to God. Our faith and our love for God have grown deeper as we have seen you walk so faithfully each day. God is truly holding you and Jonathan in His hand. What an assurance to you and for all who believe in His name. To God be all the Glory!

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  3. Thinking of you....this journey is so had but full of so much grace. Praying you feel Him closer to you then ever before.

    Sending love to you and your sweet family.

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  4. Lauren and Greg,

    I was so blessed by reading this. Please know that I will continue my prayers for your family.

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  5. Lauren and Greg I was heartened to see you are trusting the Lord in this. I am a prayer partner (one of 80) on a website prayerrequests.co.uk and have posted a request asking agreement that since the Lord Jesus raised the dead He would fix Jonathan's defect. I hope you do not object to this. I probably should have sought your input but I did it on an impulse.

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  6. Lauren, Greg and Kate...........it is late as I am reading your blog and article. I am so moved by your faith. My thoughts and prayers are with you and I will continue praying. God and your faith in Him will continue to bless and strengthen you. I will continue reading your blog........ God bless and keep you in His constant care.

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