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.

9.25.2009

journey of faith, part two

yesterday, i had a not-so-great day and i was in need of a major attitude adjustment.

i hesitated to post this particular blog because i was afraid of what you all might think of me; my strength, faith, or a perceived lack thereof. but to not address the struggles in our journey, as if they are not happening, is not keeping with the authenticity of this blog. thankfully, a couple different times yesterday i was reminded that i am only human and that it's perfectly normal to feel this way. God can handle it.

i'll start at the beginning.

i have not been physically feeling that great this past week. i have been experiencing lightheadedness, weakness, and sometimes shortness of breath from doing a simple chore. i just knew it had something to do with my blood pressure.

i've also been doing too much googling and learning about all these bad things that could happen to jonathan and me in the next few weeks due to the low amniotic fluid. my doctors had warned me against googling.

i had a doctor's appointment yesterday morning and i found out that my blood pressure was a little high. i haven't had any other related problems (headache, swelling, etc.) so it's not too concerning yet, but it was alarming to me at the time nonetheless. about five minutes later, i'm listening to jonathan's heartbeat with my doctor, and it was awful. it was slow and lacked any kind of rhythm. my own heart immediately sank. i am so afraid of losing jonathan too soon.

oh, yeah. did i mention that my son will probably die at anytime in the next few weeks?

as you already know, from the beginning of our journey we have wanted jonathan to be born alive. we want to meet this little miracle of ours. since his condition is fatal, whether in utero or after birth, then we prefer to be holding and comforting him when it happens. it is our chance to "be parents" to him and to show him how much we love him. even just a few short minutes with him would be a gift that we would treasure for a lifetime.

however, recently i have begun to see just how much it really means to me that jonathan be born alive: i am desperate for it.

because it is so important to me, any obstacle that comes about, such as complications with my health or an awful-sounding heartbeat, really discourages me. i'm not in control over what happens and i don't like it. in fact, so many little things have to line up in place for me to perceive jonathan's birth going smoothly, that i feel like to believe that all these things could actually happen is possibly setting God up to "fail." and not just to fail me, but to fail everyone who is praying for this right along with me. and that people who doubted our decision or doubted what God can do from the beginning would be able to say, "i knew it wouldn't work out." the ironic part of this is that i am worried about what the cynics think when i myself am doubting what God is capable of in this situation.

however, if we lose jonathan in utero or during birth, i know eventually i would come to believe in my heart that it all worked out the way that it should have, in spite of the profound disappointment i'm sure to feel. really, i would. but i wonder if i would still feel disappointment that the cynics did not see the same miracle in all of this that we see.

so there it is. i'm just being honest. there is a battle taking place inside of my heart over my complete trust and submission to God's will in this situation. i'm not proud of it and i wish i could be strong all the time, but i know God can change my broken and weakened heart.

i also know God has a heart for the weak and lame. there are countless stories of Jesus healing people just like me in the new testament. of course, i would rather not be included in that demographic; i like to consider myself "whole" ~ but going through such a trial is extremely humbling. God knows that i need to be reminded that in my weakness, He is made strong. perhaps even in this struggle, He may be glorified.

[Jesus] replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm. ~Matthew 8:26

He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." ~ Matthew 17:20

*****
later that evening, i spent some time going through some emails that i have received over the past couple of days from three other T13 moms who have already walked this road. each story was totally different but i was completely encouraged by each one. i noticed a similar theme in the three though....they all trusted God's plan and were all so thankful how their stories turned out. i thought about how God is writing my story and already knows the "ending." (or is it just the beginning?) i know that even now the Lord has appointed a time to take him home, and that it will happen as it should, even if it's not what i'm expecting.

i needed to read those messages yesterday, especially from other moms who have been where i am, and who can truly relate to the faith struggle i am having.

"Now faith is being sure of what we hope for and certain of what we do not see." ~ Hebrews 11:1

i read Hebrews 11 to be reminded of all the greatest stories of faith found in the bible. i was also reminded (again) just how much bigger our God is than what i give him credit for. i realized i needed to get back to the basics. what do i really believe in this situation?

by faith, i believe that God's purpose and plan for jonathan is much greater than i can comprehend.

by faith, i believe that God's plan is not to harm us but to give us hope and a future.

by faith, i believe that jonathan's time with us has long been ordained by God Himself.

by faith, i believe that all things will work for our good because we love Him.

by faith, i believe that God cares about the tiniest details relating to jonathan's birth and even death.

by faith, i believe that God is using jonathan's story to glorify Himself, someway, somehow, even if i will never see the fruit of this.

by faith, i believe that God will provide all the strength and grace we will need for every weak moment. (He already has for me even now as i write this.)

by faith, i believe that God will allow us to experience great joy even in the midst of sorrow.

by faith, i believe that God will provide us with much peace because we truly desire to honor Him with jonathan's life.

*****

"Then Jesus answered, 'Woman, you have great faith! Your request is granted.' And her daughter was healed from that very hour." ~ Matthew 15:28

19 comments:

  1. Thank you for your vulnerability and transparency, Lauren. We have been studying some of those passages in Matthew that you are currently living out in application. John MacArthur wrote- "Little faith is the kind of faith that believes in God only when His provision is already made." I will pray that you will have "great faith" to believe that God will provide even when circumstances seem otherwise. Love, Tonya Walker

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  2. I Love all your Belief Statements!!!! I will continue to pray that you will be desparate for God's will and plan for your life as well as our sweet little Jonathan. Love You Soooo Much - Michelle

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  3. Thanks for continuing to be real and vulnerable. You are doing what God has asked of you and He is faithful to the end - no matter what that end is. Thanks for sharing your heart and as always, encouraging me along the way.

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  4. Lauren, I really enjoy reading your blog. I appreciate your honesty. I posted on here before that I too am carrying a baby boy with Trisomy 13 and knowing you are out there struggling right along with me gives me so much comfort. I so wish our babies would be born healthy and strong, but God's ways are not always our ways (and that is a good thing). God is so much bigger than what we are facing right now and He will get us through it. I heard a mother of a Trisomy 18 baby who died after 8 days say that one huge lesson she learned in her sorrow was that you can be furious with God but still be in a relationship with Him. This has helped me so much because anger has recently set in. I love God, but I am angry that this is happening to me. Just remember that God knows your heart and He understands your frustrations. You just hand in there and know that so many people love you and your family without even knowing you personally. I am praying for you dear sister in Christ.
    -Katie White (GA)

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  5. You worry that the cynics won't see the right thing in your journey, but they will see what they are supposed to see. Your strength and faith are an inspiration to many, those who are not inspired and who doubt your decisions are the ones with a problem. You are not failing them, they are failing themselves. God is giving them an opportunity to gain from your faith and the choice is theirs. No matter the ending of the story there is so much to be learned from you as you travel this very difficult path and from my viewpoint I have seen the struggles you have and the resolutions you reach and they build my faith a block at a time.

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  6. you are right on...God can handle your pain, doubts, fears and even anger. he loves you and doesn't expect you not to feel the impact of this trial. praying "i believe Lord help me in my unbelief" is biblical and right. you cant be strong enough or faithful enough not to have doubts. that is your Father's job to work in you...and He's obviously doing it. thanks for always being real...on your good days and bad. that is true Christianity. you have encouraged me and many others by sharing this journey.

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  7. I appreciate you being open and honest. It makes me feel better to know that others struggle with their frustrations and anger toward God. I am always reminded of Bibical figures like Job that were angry with God and expressed that to Him. He does know our heart and feelings and even created those emotions in us so it is ok to have those feelings and express them to the Lord. I am sorry you have had a rough week and I will be praying for you to be "anxious for nothing" and for God to give you a "peace that surpasses all understanding". You, Greg and Jonathan have been a witness for Christ to more people than you will ever know!

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  8. We don't know each other, but I want you to know that I believe in you and I believe in Jonathan. Your faith is an inspiration. Your honesty is humbling. Jonathan is a precious one of a kind boy. He is very fortunate to have you as parents. While Jonathan has many challenges, he is perfect in God's eyes and the love you have for him is perfect. God bless all of you in your journey of faith to meet your precious son, Jonathan.

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  9. A friend posted your story on her FB page and I have to say thank you for your faithfulness in such a hard situation. The easy way out as I am sure you were told would be to "terminate"...

    I am enouraged by your story if nothing else many are and will be. That in itself shows Jesus. Your honesty and willingness to share this very difficult time and grief is nothing short of Jesus light shining forth into a dark world. Following Jesus isn't easy I believe it is harder to make that choice more often than not. But we are blessed and others are blessed by our obedience. I pray God's peace for you, His protection of your health and His courage for you and your husband. I am thankful for the legacy you are leaving your daughter and the generations that follow.

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  10. Lauren,

    There is no way I can know exactly what you and Greg must go through hour by hour.

    However, I do know the lost of a child, as my wife Paige miscarried one of our children at home.

    Although we did not see the Lord's plan during the pain, shortly we did see why He brought us through such a tough time.

    Reading your story touched our heart, so I blogged on it, and posted it for others to read. http://www.mlmhelpdesk.com/2009/09/27/jonathans-journey-of-faith-hope-love-the-story-of-unconditional-love/

    I'm a firm believer Prayers still works, and we will be praying for you guys and little Jonathan.

    Lauren thank you for sharing your true feelings. Even when you need an attitude adjustment:)

    Living An Epic Adventure,

    Troy Dooly

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  11. Lauren,

    I have just found your blog when a friend posted it on Facebook. While I do not know you, my heart goes out to you and your family.

    I would like to tell you a short story about my cousin. In September/October of 2007, my cousin and her OB found that she was carrying conjoined twin girls. They were conjoined in such a way that they shared everything from their tiny mouths to their waist. I will not tell you all the details. But as more ultrasounds were performed the more grime Maya and Lexi's future looked.

    Like you, my cousin and her husband wanted to hold and comfort their children in their final moments on earth. And with much prayer and a great deal of courage, they received their dream! The girls lived and breathed for approxamately 90 minutes. These were two little gifts from heaven that should not have breathed one single breath (one detail needed ... their 3 chamber heart was emtpying blood directly into their lungs), yet God granted my cousin a family for a short time. I know how much that meant to them.

    This is a very tough time and I don't know that anyone would not faulter. Keep your faith and believe and God will grant your desire.

    I understand that my cousin had a totaly different situation, but I hope you can find some comfort in knowing the wonders that God can provide to those who are faithful!

    Praying for you and your family! Carrie S.

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  12. Lauren & Greg,

    PLEASE HAVE HOPE! I write this as a cousin to a Patau's child. My cousin is Trisomic 13 and is ALIVE at 13yrs of age!

    These children, while not often, can survive. Ramona has severe issues...blindness, deafness, heart, lung, kidney problems. BUT SHE LIVES and is HAPPY.

    We know that she could be called to Heaven anyday, and praise the Lord for each day we have her here.

    Due to my cousin and my brother-in-law (downs), both my older daughter and the girl I am now pregnant with, have been tested. Thankfully, nothing!

    Please know that Patau's kids can survive. THEY CAN BE HAPPY! Whatever time God gives you with your son, be thankful. :)

    -Andrea (Minot AFB, North Dakota)

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  13. Simply put- You're an amazing woman! God is using you and your family. So many people choose to run away from the trials in their life. It is inspiring to read your story and know that you are allowing God to use this situation. Thank you.

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  14. Lauren and Greg...My heart aches for you and your precious son, and at the same time beats with pride at what God can do in such a tragic situation when we put our faith in Him. Bless you for sharing such a beautiful faith, and lifting up the name of our Savior while doing so.

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  15. Lauren and Greg, I do not know you, but read your story in a wonderful article online. My heart is breaking for you. God is good all the time!

    I have never experienced the loss of a child, but my parents did lose my little brother in 2004 at the age of 6. My little brother was my best friend, and while it took me awhile to understand that God works in mysterious ways, I always remembered that he would be here for me. His plan is greater than ours.

    I will say prayers for you and your family.

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  16. Lauren, we are still PRAYING!! We are praying for your strength, health, and for Jonathan to be born alive. You are such a strong, faithful, and beautiful (inside and out, your pictures maternity are great!) person! We will continue to keep you, Greg, Kate, and Jonathan in our thoughts and prayers during this very difficult journey.
    Love,
    Katie Gorski

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  17. mike.stanley@baronservices.comOctober 1, 2009 at 11:01 PM

    Lauren and Greg

    My name is Mike Stanley and our family use to live in Fort Walton Beach a couple of years ago. My wife keeps up with the news back in FWB through the NWF Daily News and read the story that had been written about the journey that you are currently taking. It is what I would call the narrow path of the one less traveled. The path that Christ chose to take.

    I am a fan of Mark Schultz and Itunes informed me that he had a new album out so I downloaded the album and listened to each track and one song stuck out and I could not listen to it enough. I came home that evening from work and told her about the new album and also about this song and then played it for her. She liked it but I really thought it would bring her to tears like so many of Mark Schultz usually do. I was suprised when she didn't cry so I stopped playing the rest of them for her.

    After my wife read the article she began to tell me about it and said that I needed to read it but I told her I couldn't do it. Too painful! But today on my way home I started up my Ipod in the truck and found Mark Schultz and played this song "What it Means to Be LOVED" and then it hit me. This song fits you and your husbands situation in the beginning. Only God knows what the outcome will be. I am not sure how I can upload the song on your page but I hope you can find a way to listen. We will pray for you Lauren, Greg, and Jonathan in our prayers. There is another song by Building 429 and it is called "Always"

    God Bless You All

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  18. You have an amazing story to share for eternity. One comment said that the easy way would be to terminate. No. In every way (morally, biologically, emotionally . .)you have chosen the better way. Interacting with that little one for the time you have him can never be taken away from you. You are and will be blest for your choice.

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  19. I read your story through a friend that posted it on FB and I can't stop thinking about you and your precious family. My heart has been aching since I read about your precious little angel. Being a parent of a child with Down Syndrome, I too feared that I might lose him but the Lord in his mercy gave us a healthy baby boy. Lauren, I will continue to pray without ceasing for your precious little angel that the Lord would perform a miracle. Bless you for your faith and the inspiration you are to many who have been touched by your story.

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