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.

7.08.2009

thank you

greg and i want to express our sincere "thanks" to everyone for their overwhelming support and prayers. we have received many emails, messages, phone calls, and cards that have been so encouraging to us. we have had gracious offers of help with kate and for meals. we are truly thankful for your love and prayers. please know that the prayers for us are indeed working and that greg and i have many, many more good days than bad. we are doing better than we ever thought we could in the midst of such devastating news.

while it is hard for me to have to walk through such a difficult trial in a very public way, i feel that it is very important for everyone to know what we are going through. journaling and blogging has been a huge release for me already. during those nights when sleep is far from me, if i can transfer those thoughts running through my head into some other medium, then i feel like i can just let them go and find rest. it literally clears my head. therefore, this has become a place for me where tears fall as i write, and where healing happens with every drop.

at first i felt the reason everyone should know about our son was because i wanted to avoid the awkwardness of having to answer seemingly innocuous questions from people who were unaware of our circumstances. as i continue to grow bigger each month, i am sure to hear: "is the baby's room ready?" "are you going to have a baby shower?", etc. i guess i was afraid that those types of questions would pierce through the thick skin i selfishly desired to grow for protection over the coming months. while i know i will face questions like that no matter what, i feel the purpose in why i want everyone to know has changed. i know i will not be the last person i know of that will be confronted with having a child who has been given no hope of survival. i want people who are facing what we're facing to know they are not alone. we have surely not been alone in our walk. i sincerely pray that we can be used in such a way to help others, now or in the future. even if that means being transparent with our struggles and heartbreak for now.

a great example of families reaching out is this website i was so blessed to have found that first week: http://www.livingwithtrisomy13.org/. this site is dedicated to families who decided to continue their pregnancies despite the odds they were given with a diagnosis of trisomy 13. i poured over the hundreds of stories of families who were just like mine, going through the very same things we have or will have gone through in the next few months. it was so encouraging to see how God was at work in their lives through their circumstances, just like He is already doing in ours. if you are interested, check out the "treasured memory albums" or the "prenatal diagnosis family albums" on their site. and have tissue ready. ****however, to clarify something: while some of these babies live for much longer than expected (up to a few years even), our jonathan was diagnosed with Full Trisomy 13, which is much more severe than the Mosaic or Partial diagnoses, which sometimes do not have as detrimental an effect on the development of the baby.

my encouragement today: "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." - Romans 15:13

1 comment:

  1. Dear Lauren and Greg As I have been recovering for the last few weeks, you and your precious baby boy have been in my thoughts and prayers every day. You are so fortunate that you have such a strong Christian faith; many wonderful, supportive family members, and a wide community of friends and supporters. You have already demonstrated that you've got what it takes to face the challenge of your lives and you will continue to do so with faith, grace, and love. Look for joy in each day, be strong in your faith, support one another, and let others support you both when you need it. Please give my love to sweet Kate and both your Moms.
    Thank you for sharing this testimony of faith and love with all of us. . . God IS good!

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