Embracing God’s Unexpected

josephNICULife rarely goes according to plan.

Three weeks ago today, my daughter-in-law Bethany went into early labor. As we waited in the hospital lobby, we were concerned. The baby was in distress. He would be born seven weeks early. Bethany had not had an easy pregnancy. I prayed for her and the baby’s well-being and determined to trust in a good God.

When Daniel finally arrived downstairs to give us the news, there were tears streaming down his face. Bethany was fine, but the baby was not. There were severe complications. He had to be resuscitated at birth. His abdomen was filled with fluid. He could not breathe on his own. He was severely anemic. And the hardest to hear: even if he survived, his problems could well be a life-long struggle. His facial features indicated possible Down Syndrome.

During the night, little Joseph was rushed to Children’s Hospital in Washington, D.C., his condition grave. He was now a 45 minute drive from his mother, who lay helplessly in Annapolis recovering from her c-section. When Daniel and I arrived at Children’s the next morning, we were told Joseph was the sickest baby in the NICU.

They were dark days. Bethany and Daniel clung to anything positive. We scrambled to arrange for meals, childcare, and round the clock support of Bethany and Daniel. And we waited to see what God would do.

 

After a week or so, Joseph slowly began to improve. He was finally able to breathe without the ventilator. He started digesting his mother’s milk, given to him through a feeding tube. The fluid began to subside, albeit slowly. His blood numbers stabilized. I began to cautiously feel hope for the first time.

 

Then came the devastating confirmation: the tests revealed Joseph is definitely Down Syndrome. The whole world turned upside down. Really, God? After all the prayer and pleas, this is your answer for us? I struggled with how a good God could give us such pain.

 

Through the fog of grief, it finally came down to this for me: is God a god to be trusted or isn’t he? Will I only trust him when I understand? Will I only think him good when he does what I want him to do? Many caring friends came alongside me and related stories of the blessing Down’s children are to their families and friends. While I truly appreciated their encouragement, I knew the answer to finding peace was not in hoping for positive circumstances or outcomes. Peace could only come in fixing my gaze on God alone.

He is good. All of little Joseph’s problems were not given to us in spite of God’s goodness. They were given to us because of God’s goodness. God has great plans for this little baby. He is going to reveal himself through his life. And as his family surrounds him with love and support, God will reveal himself through us as well. The world will see God in our love and commitment. They will observe us operating through his strength, our own resources at an end. Hopefully, they will be inspired in seeing a family with an unwavering commitment to trust God, no matter what happens next.

It’s why we are here. God has chosen to reveal himself through his church. When we are obedient to him, loving like he loves, emptying ourselves of our own agenda and surrendering to his, Paul tells us we will “appear like lights in the world, holding fast the word of life.”

Saying yes to God allows him to use us to make himself known. It also opens a conduit for God’s blessing. When our hearts are soft, willing to listen, eager to obey, we are moldable. We have cultivated the soil. We are ready for transformation.

So, as I slowly get back on my feet, it is with a deepening sense of dependency on the God who directs my path. I’m clinging to him like a life preserver. And I’m better for it.

 If you would like to follow little Joseph’s progress, click on this link. Family members update regularly.

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    The Conversation

  1. Anne Mateer says:

    Although I heard this straight from your mouth just the other day, these written words touched my heart again, especially this: “While I truly appreciated their encouragement, I knew the answer to finding peace was not in hoping for positive circumstances or outcomes. Peace could only come in fixing my gaze on God alone.”

    So very true, my friend. Thank you for the reminder–and for sharing your heart.

  2. Christine says:

    Julie, What a beautiful, beautiful post. Your words and sentiment are a great example! Praying for little Joseph’s continued improvement, and for his dear family!

    • Jennifer Burger says:

      Joseph is already so very blessed with a caring, family who knows the living God. Loved your line “And we waited to see what God will do.” Yes. Such a good posture of faith for all of us as we look to the future.
      Love you still, Julie!

  3. Kristy says:

    I loved reading your post and could relate so well. I have an 11 year old son with Down Syndrome and our world was turned upside down 11 years ago when we got the news just an hour after his birth. I won’t say it will be an “easy” road…really is parenting any child easy? But it will be a rewarding one and different one than planned. Someone gave us great advice after Chase was born…..”Treat him like any other of your children”, hold him to the same standards”. I had a 21/2 year old daughter at the time and had another daughter when Chase was 4. He fits perfectly into our family and is doing wonderful! It is not the life we had “planned” however we can’t imagine it any other way!

  4. Loris says:

    Love you, Julie.

  5. Julie, What a beautiful story of trust in the Almighty. My little Joseph was also an unexpected gift from God. He is our third child and the long-awaited son my husband so hoped for and soon after his birth we too found out he has Down syndrome. There is a poem about this situation someone wrote called Welcome to Holland. In it the subject had planned a trip to Italy but got off the plane at Holland. Holland was nice, there were many beautiful things to see in Holland and much to learn about. While they did not get to go to Italy, Holland turned out to be pretty good. Today, 21/2 years later, given the chance I would not have changed the plane’s direction. I am glad we got off in Holland. The beautiful son I have is perfect the way God made him. There will be challenges, just as there are challenges with my “typical” children but he was made by God’s hands. Knit together in my womb, just as he is. His life has meaning, purpose, joy and immense value and we are all blessed for it. Prayers for your little Joseph as he continues to grow and thrive. May the peace of Christ be with you and your family. Jennifer

    • juliecoleman says:

      Jennifer: Thank you for this. Joseph has already brought joy and love into our family. I do look forward to how he will enrich each one of us, just as we will enrich his. Your testimony is a great encouragement as to how that can happen.

      It really is a life lesson for me– in choosing to trust God when he zigs and you expected him to zag. All we can do is rely on his character– his goodness and wisdom– and know he will not act contrary to those traits. He is worth trusting!!

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