Hi Ally,
How much courage it does take to write this down; to admit to all of this. We are so easily drawn to closing our eyes, hoping it will all go away, work out somehow. I know you don't feel courageous but you ask for courage and God pours buckets of it out on you. I know you can't rejoice in every moment but God is giving you the garment of praise for the spirit of heaviness. You look different to us than you do in the mirror. To us your saying "you too can do this." "Press on to the higher calling." "God holds it all together with the sound of his voice." Really, it's all as tenuous Ethan's life. I know these are not words that bring relief but God will bring that too. You will be with Ethan for eternity; a lot longer than any of us get on earth. You will miss him one day but he is part of God preparing a place for you in heaven. I am also in tears as I read your post and write this. I hardly know you but my spirit is united with yours. You are dear and precious and so is your darling, son to our Lord. Prayers, hope, and much love from my little corner of the Mercy ships world in Texas. Janet
#1 Janet Butler on 2014-11-07 16:25
Oh Ali, I can't begin to imagine what you are all going through but am amazed at your blogs, sharing your heartbreak with us all. You may not feel it but you ARE amazing and an inspiration to any Christian going through hard times to rely on our amazing God to bring us through it all. It is so easy when things are going well but so much harder to understand and accept when things aren't. Many prayers all over the world are being said for you all and I join them in praying for strength for you and a miracle for Ethan. Much love, Lesley x
#1.1 Lesley Davey on 2014-11-08 08:50
I'm so sorry you & your family have to face these trials. I do know that the trials we experience in life serve a greater purpose beyond our small world. While no one escapes trials, thankfully “the Spirit comes to the aid of our weakness” (Romans 8:26). God uses them to guide and shape us. I can encourage you with what God has taught me through my personal trials. First, God taught me to focus on the Fruit of the Spirit (Galatians 5); especially love, joy, and peace. If I focus on God’s love for me and grow in my love for the Lord then I will find joy in God, not the situation, which in turn will lead to peace in the midst of difficulties. Next, I had to learn to “be still and know” God (Psalm 46:10). Finally, I needed to work on the willingness to let go of control.

These lessons did not come easily, but I was always able to claim God’s promises; He “draws near to the brokenhearted . . . saves . . . delivers” them from afflictions (Psalm 34:18-19), “the Lord your God is the one who goes with you to fight for you against your enemies to give you victory” (Deuteronomy 20:4), and “He gives strength to the weary, and to him who lacks might He increases power” (Isaiah 40:29).

One last bit of encouragement I received from Nancy Mehorter when my son was headed for surgery as a baby; Psalm 73:23 "Nevertheless I am continually with You;You have taken hold of my right hand." She told me every time she went into surgery she claimed that verse and would picture God holding her right hand.
#2 Janis Cameron on 2014-11-07 17:14
Beautiful. That's what came to mind as I read your words that came from your heart. Appreciate your honesty mixed with faith, and your trust mixed with fear. Plus, you are a mighty good writer! My nephew's 2-month old son, Malcolm Johnston, has similar heart problems and faces 2nd open heart surgery in Dec. Reading about little Ethan and you has helped me better grasp what my nephew and his wife face on a daily basis. My prayer is that one day these two little guys will meet and exchange miracle stories.
#3 Julie Anne Cave (Homepage) on 2014-11-07 17:37
How I wish that kisses could fix what is wrong with your darling boy. It is not only his heart that is broken, but yours as well. If only it weren't so. I remain in prayer for you.
#4 Nancy B. Kennedy (Homepage) on 2014-11-07 20:19
Oh Ali .... Love and prayers. Love and prayers for you all.
#5 Ellie (Homepage) on 2014-11-07 21:21
When you need a reminder that sometmes miracles happen, that it is OK to believe and hope, read this... ... Until then, know that I am praying for you and believing what you don't have the heart to hope for ... In the meantime, remember that there are two types of parents in this world... "There are the parents who wake up every morning with the expectation that their children will be healthy... and there are the parents who wake up every morning hoping their children will have a good day."
#6 tricia (Homepage) on 2014-11-07 21:59
Psalm 61:2-4 From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I yes, a rock that is too high for me. For You have been a shelter and a refuge for me, a strong tower against the adversary. I will dwell in Your tabernacle forever; let me find refuge and trust in the shelter of Your wings. Selah pause, and calmly think of that!
Always praying for you
#7 Subi Wilks on 2014-11-08 00:56
Believing for the miracle! Sending you a gigantic hug!
#8 michelle on 2014-11-08 08:50
Thank you Ali for writing this out for us to read and spelling it out even clearer. And for the beautiful pictures of your beautiful son. And for your trembling faith... precious in our sight and precious in the eyes of God. Faith that looks up to Him...
#9 donna bristow on 2014-11-08 09:44
Such bittersweet days you are living in. Prayers from one mommy heart to another.
#10 Carla on 2014-11-08 14:12
Dear Ali, Praying for you and your beautiful family tonight. Kiss those adorable cheeks for us on the Internet who have fallen in love with your little charmer and his lovely sister, too.
#11 Laura on 2014-11-08 21:58
Oh, my heart hurts for you. Please know that this momma's heart can only imagine the pain and fear that you are feeling. I am saying a prayer for you tonight...praying that God wraps you up in His arms with the comfort that only our Perfect Parent can provide.
#12 Ella-Kate (Homepage) on 2014-11-08 22:07
What hard times. And what an absolutely precious little boy! When I was reading this post, I kept thinking of Kara Dedert's blog - she has a little son with broken body, and has a marvellous way of seeing Jesus in the midst of the pain. Perhaps you'd enjoy perusing it?
#13 Arenda (Homepage) on 2014-11-10 19:08
Ali, your words echo what has been floating around in my head for a long time. I felt like I needed to share our story with you as our paths are somewhat (although not completely similar). My husband and I have been reading your blog since your single days on Africa Mercy. Around the time you found out about little Ethan's heart issues, we were preparing ourselves for the arrival of our rainbow baby and eighth gift here on earth. In May, we welcomed our beautiful daughter here with much hugs and kisses from siblings and family and friends. Here was an answer to our prayers in flesh. As you were welcoming your Ethan here with all the unknowns, we began our journey into the world of medical unknowns with our daughter, Emmie. She was diagnosed with neurofibromatosis in August at two months old and we discovered a plexiform neurofibroma (a benign tumor for the nonmedical world) on her neck at that time as well. We have struggled and cried and prayed and even yelled as we try to focus on what this all means for her and our family. And we have clung tightly to our Lord. We received the great news that surgery is not necessary at this time but the unknowns of if/when or how many surgeries is a struggle. She's a slowpoke...from the get go she has done things her own way and everything we knew about parenting these past eleven years has been thrown up in to the air and we grab what we can and make it work all the while praying to our Lord for strength and wisdom to know what she needs and when. She's a tough girl. A fighter. And she is surrounded by a horde of brothers and sisters who will fight along side her. The younger ones don't understand, like your Zoe, and we teeter, at times, on the brink of "normal" and "medical normal." I love to see them acting like normal brothers and sisters but it's always there, hanging over us...we are watching, ever vigilant to detect the slightest delay or need that she may have. In the meantime, she smiles and squeals with delight. I'm sorry. I just felt like I needed to share a piece of our story and to let you know we, too, like so many others, are praying for your beautiful family.
#14 Abbie (Homepage) on 2014-11-10 22:12
Thank you for writing and for sharing. It means so much.
#15 Julie (Homepage) on 2014-11-14 16:44
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