Day 38 – I’m a Passenger

We had a doctor appointment Monday that left me feeling optimistic. Dr. S. insisted that he didn’t want to build up false hope, but yes, Nora is measuring right on target.  But for her heart condition (tetralogy of Fallot w/ VSD), and the official diagnosis of T18, she appears otherwise healthy. He did also mention that in his 20 years of practice, he has only delivered five or six T18 babies to term. Honestly, he doesn’t have a ton of experience with them. This is so rare and when it does happen, most people elect to end the pregnancy. I am ever so thankful for his optimism and also his honesty. I would much rather be given some sort of HOPE than have Nora written off as a lost cause.

I am so grateful for the optimism, yet my own emotions are experiencing a great divergence from day to day. I continue with all of my best efforts to stay focused on the present, and to allow God to take control of this, but there are days when the fear and doubt come slithering in.  There are the days that I have completely accepted that Nora is exactly who God made her to be, and then the days that I mourn the loss of who I thought she was going to be. Some days I imagine what it would be like to bring her home, others I’m tormented by the likelihood of planning for an infant’s funeral. I can’t think of a time in my life where I’ve felt such a loss of control. Yes, it is frightening, but ultimately it is where I need to be in order to let God take over.

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I am the blind folded passenger in a car and have no idea where we are going. If I were driving, surely we would crash as I can’t see a thing. If I didn’t know and trust God as I do, I would be terrified and plotting my escape. Instead, I imagine God is sitting right next to me, a gentle smile on His lips, one hand on the wheel, humming to a song on the radio. He’s certainly not worried or anxious because He knows where He’s taking me. He is so excited to take the blind fold off when we get there. In the mean time, I still have my sense of hearing. I can enjoy the song on the radio. I still have my sense of smell and touch. I can breathe in the crisp breeze that blows on my face through the open windows.  I can sit back and relax as God leans over to tell me with His unerring wisdom, “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11 NIV) With my hands clasped firmly around my round belly, I can’t help but smile at this news from beneath my blind fold.

9 thoughts on “Day 38 – I’m a Passenger

  1. As I read this I can’t help but thinking about the song Justin and I danced to at our wedding (come away by Norah Jones). I am so inspired by this blog and your amazing additude! God is driving the car, I have no doubt!

  2. Wow! Elizabeth has led me to your blog and I pop in here when I can to read your story…Nora’s story. Today, wow, you wrote something that I had to reread…and maybe will need to reread more to allow it to really sink in.

    “I am so grateful for the optimism, yet my own emotions are experiencing a great divergence from day to day. I continue with all of my best efforts to stay focused on the present, and to allow God to take control of this, but there are days when the fear and doubt come slithering in. There are the days that I have completely accepted that Nora is exactly who God made her to be, and then the days that I mourn the loss of who I thought she was going to be. Some days I imagine what it would be like to bring her home, others I’m tormented by the likelihood of planning for an infant’s funeral. I can’t think of a time in my life where I’ve felt such a loss of control. Yes, it is frightening, but ultimately it is where I need to be in order to let God take over.”

    I am on a different path, but it is somewhat parallel to your hard one. My husband left me and my 4 kids 2 years ago. I had always been a stay-at-home, homeschooling mom. So yes, the fear can take over and then I have to wrestle with putting it back in its place. That paragraph you wrote was a great reminder that my rollercoaster emotions are ok and that I am right where God wants me. I love that God used YOU to relate that message to me!

    I also am stuck on a Casting Crowns song, which I had literally just posted to my facebook page before reading your post. I want to share the link with you, in case you’ve not heard it, b/c it is relevant with this post. What a blessing you are…and Nora is!

    Here’s the link: http://www.youtube.com/watch?v=Ouj1Ai4lIeY

    Hugs,
    Jennifer

  3. Love this. Thank you for reminding me of God’s constant presence in our lives. Yes, God is certainly driving the car. You and Nora are going for quite a ride!

  4. Paula Miller told me about your blog during our MOPS meeting on Monday and then sent me the link. I have just sat here and read the entire thing from the beginning. I am so impressed with your honesty, your love for God and your family and with your willingness to share this heart breaking and precious time with all of us. I had a still born son 11 years ago tomorrow and my faith did not shine like yours is. I know your intention is not to impress me or anyone else reading this, but I have to say that I believe God so gently and perfectly placed His little Nora into your stomach. I don’t believe you and I have ever met, but I truly have a mental image of you just radiant and glowing with God’s immense love for you and for His beautiful child that you are carrying. I can see him saying “I want you all to notice this beautiful woman, so I gave her this amazing glow….SHE is SUPER special to me. Love her the way I do, because she is definitely worth it!”

    Thank you for walking in God’s light and letting us watch. You are inspiring.

  5. Prayers for you on this journey. May God present Himself in ways He never has before. May His peace overwhelm you. I went through a similar journey with my firstborn, Faith. Trisomy 13. Found out when I was 20 weeks pregnant. She lived four days. We held her and loved her until she ditched us for heaven. More of her story at faithhagen.blogspot.com
    Feel free to email me if you want – anytime.

  6. Your complete trust in God and His plans for you and baby Nora inspire me and give me hope the He has big plans for me as well. I suffered a devasting blow the other day and while it is nowhere near the magnitude of yours, it has brought me to believe that it happened for a GOOD reason, saved me, if you will, from suffering an unhappiness that may have been otherwise. You just flat out amaze me Aleisa Yusko! Thank you for being my friend!

  7. A friend of yours I know through a Cincy Moms group pointed me to your blog, and I have to tell you how completely overcome I am by your story and your optimism and faith. My own daughter, now ten months, was diagnosed with tetralogy of Fallot with VSD when I was over 37 weeks pregnant, and your description today of mourning who you thought your daughter would be completely hit the nail on the head. I know I can’t completely relate to what you are going through, but my own scary story started almost a year ago, and I have been feeling so emotional about it all lately. Reading what you wrote really pinned down what my own thoughts were. Please know that you and your sweet baby have been in my prayers since I first read your story!

  8. I truly hope this could be turned into book/devotional form at some point. I have not ever gone through something like this with a baby (other than a miscarriage but it was very early on) but I am most definitely in the middle of the most challenging and heart wrenching time in my life thus far and this blog has been such an encouragement to me. I know beyond a shadow of a doubt that there are thousands more this would touch, inspire, and helpt to strengthen their walk with God. Your writing is incredible and to see this very real nitty gritty faith walked out by you is more than inspiring.

  9. This is so true and wonderful! God does love us more than we can imagine. He would never harm us.. He wants the best for us… He is guiding us… we just have to stop ourselves from trying to take the wheel while we are still blindfolded. This blog had me in tears as is spoke truth into my heart that I needed at this very moment. Aleisa, you are such a beautiful person on the inside and outside. God is adding to that each day… I look up to you and the strength and faith that you have so much of. Each blog entry is wrapped in God’s love and grace. God bless you and your beautiful family.

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