The Redeeming God

IMG_6314One statement parents of medically complex or special needs children hear often is this: “God designed your baby this way for a reason.” And while the concept that God is sovereign and has a purpose for that child is a comfort, something in that thought seems discordant. Did God create a child with pain and sickness, with mental or physical handicaps, knowing the depth of anguish that would cause? Did he design my baby to lie in his hospital bed, flailing his tiny arms as he struggled to pull air through his delicate airway? Something in that seems so wrong. So hurtful. In the conflict caused by that thought, I could begin to wonder if the God I claim to trust is really worthy of my trust. Did he create this pain for me and my baby?

The first chapter of the Bible describes the creative act of God, by which he brought into existence everything that now is. At every phase of creation, God pronounced it good. He, the ultimate standard of beauty, could look on his world and say “This is good!” There was no ugliness, no pain, no agony. Not one of God’s creatures was malformed. The entire world worked as it ought, in perfect harmony.

And then, through the agency of the fallen archangel Lucifer, sin was introduced to that perfect world. Adam and Eve rejected the beauty of God’s design, taking what he had forbidden. What was beautiful was now marred. What was peaceful was now harsh. What was lovely was now misshapen. And until the end of the world, it will continue to be so.

That could have been the end of the story. Pain and suffering that afflict the entire world, to no ultimate purpose. The consequence of sin staining every aspect of life, with no hope of relief.

But God is the Redeemer.

He looked upon what is hideous and said “I will make it beautiful.” In his kindness and love he takes what has been destroyed by Satan and remakes it into a beautiful testimony of his grace. He has done it all through history, with no greater example than that of the death of his own Son. Jesus hung naked on a cross, mocked and ridiculed. His body was torn and beaten so severely that he hardly looked human. And yet, his hoarse voice cried out “Forgive.” And the beautiful grace of God redeemed the cruelty of mankind to bring about the salvation of mankind. Because of that great act of sovereign redemption, we have confidence that one day, all things will be made beautiful again.

My child is not malformed because God made him that way, but because of the effects of sin on the world. His physical struggles are not beautiful. But God will take what is ugly, what is painful, and redeem it. He will take what seems senseless and use it for a greater purpose than our feeble minds can fathom. He did not create the ugliness in this world, but his over-abundant grace is powerful enough to redeem all of it.

Sin may destroy, but God is able to restore.

I Do Not Walk Alone

Today, William is two months old. Never would I have dreamed I would celebrate two months of his life with him still not home with us. We seem to be nearing the end of this phase of the journey, but there is still so much uncertainty. We don’t know what lies ahead for our sweet little man, but we have come a long way.

IMG_6033

The road has been, and still is, a long and painful one, but it is not bleak and barren. All along its length it is hedged with the blooms of God’s faithful love and provision. His kindness beams down upon this road like sun through the branches of ancient trees. At every bend, more challenges and disappointments crowd about me from the shadows, but the goodness of God surrounds me, shielding me from their grasping, ghostly fingers. Gazing back on the way I have come, my heart is filled with a wistful gratitude. Wistful, because I could still wish things had been ordered differently for me, but grateful, because I begin to see the beauty of the way I have been called to walk. I have not journeyed this far alone. My God has walked beside me for every faltering step, and he will never leave.

Happy two months, little man! I love you more than I could ever express, and I am thankful to walk this road with you.

Counting Our Blessings

The past six weeks have been the hardest season of life I have ever experienced. There have been so many moments in which I have felt like someone kicked me in the stomach, the emotional and physical strain was just so great.
But in spite of all that, these weeks have been some of the most precious in my life as well. I have seen and felt the presence of God in so many ways, and I just wanted to share a few of the blessings he has given me since our baby was placed in NICU.

  • The Sunday before William was born, we joined a new church. Our pastor came personally to sit with us and encourage us for almost an hour on the afternoon of William’s birthday.
  • We also had a visit from my former youth pastor and his wife – a couple who have had tremendous impact on both our lives. Though we are no longer a part of their local ministry, they drove all the way to Spartanburg to be an encouragement to us.
  • My sister and her husband came and brought us pizza in the hospital, and stayed to play a card game with my husband and me, getting me to laugh and feel normal again, even in the midst of all the sadness I was feeling.
  • The week of William’s birth, my husband missed all but one day of work, and, because of the nature of his job, he receives no paid time off. We knew we would be feeling some financial pressure because of that, but on the day I was discharged, a friend met us in town and gave us a check that completely made up for his missed hours.
  • I wanted to get professional pictures made of William while he was still in the NICU, but I didn’t want to spend the money on hiring a professional photographer. Before I could even pray about it, a lady I knew almost solely through Facebook contacted me and said she felt led by God to offer to take pictures of William for me.
  • In order to get those pictures made, I needed someone to watch Adrian on a Tuesday morning. Again, before I could tell anyone or even pray, I was told of a lady who wanted to come and watch Adrian for me, and who had Tuesday free. She even brought us a meal!
  • My parents have sacrificed so much to help us during this time. They take our oldest son, Adrian, every weekend, so that my husband and I can go for a date and spend some time together at the hospital with William. Even the time to take a nap without having to set an alarm is priceless!
  • About a week or so ago, Adrian’s tricycle was stolen. He was devastated. Less than a week later, a giant Amazon box showed up on our front porch, with a Paw Patrol bike inside. My family had schemed together and pooled their money to buy it for him. He loves it, and when he can’t ride it outside, he will sit on it in our living room, pretending it’s a motorcycle.

On top of all these blessings, we have heard from people all over the country who are praying for us. Many of them we have never met, but they heard of our situation through a mutual friend and are supporting us in prayer. There has been no greater blessing than that.

In a trial like this, it is easy to feel isolated. Through the kindness of Jesus, who works through his body, the church, we have felt so loved and encouraged! Every time we have needed to see God work, he has sent someone to help us, through a visit, a call, a note, or even a comment on Facebook. God never deserts his children, and he will not abandon us, either!

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation…”

Best Laid Plans

I love making plans. Knowing the schedule beforehand, with every facet planned to coalesce into a cohesive whole, sets my order-loving heart at ease and allows me to enjoy whatever activity it may be. I do this with everything – my morning schedule, my plan for nap time, my chores, our children’s futures, our retirement years, everything! Logical, orderly planning is a thing of beauty to me. And when those plans are thrown off, I tend to react poorly.

IMG_5910.JPG

I have been learning that our best laid plans are often changed, rearranged, or discarded altogether. Perhaps nothing has helped me learn this more than our NICU stay. We just passed what would’ve been my official due date yesterday, and that was the tentative goal date for bringing William home. He most likely has at least a couple more weeks, if not longer, to be in hospitals before he can come home with us. When he received his g-button surgery, my plan was to have him home within a week after the procedure. Then he started becoming dependent on his oxygen supply, and delayed our progress. Most recently, we received news that a world class surgeon was going to work with William on a surgery that should help him learn to breathe and eat without medical assistance. Then, in the same day, we found out that our insurance was pushing back on the idea of sending him out of state for the surgery, essentially halting all progress until we can come to an agreement.

What am I to do with these delays? No one seems to be following my plans!

It’s times like these that remind me how not in control I am. I am not the one who rules my life or the lives of those around me. I am not Sovereign. I am not Omnipotent. If I am not the one in control, then no amount of stress or fretting on my part will change the outcome of these circumstances.

So when life is out of my control (which it always is, though I may think otherwise at times), how must I behave?
“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God;” (Philippians 4:6)
“And let the peace of God rule in your hearts, to which also you were called in one body, and be thankful.” (Colossians 3:15)

Okay, I get the idea of stopping my fretting and resting in God’s peace…but be thankful? What in the world am I supposed to be thankful for here? Nothing is going according to plan, and all these delays are going to give me wrinkles or grey hair or an ulcer. I know it. Why should I be thankful?

Because gratitude is one of the most powerful displays of faith.

I can be grateful, not because I am glad all of this is taking place, but because my life is in the hands of an All Powerful, All Knowing, All Gracious God, who is moving events and planning circumstances to bring about a beautiful end.

If I believe that, then before I know the outcome, I can be overwhelmed with gratitude for every delay, every setback, every frustration, knowing that each one is evidence that God is working.

“It is good that one should hope and wait quietly for the salvation of the Lord.” (Lamentations 3:26)

Out of the Depths

I never thought I’d be a NICU mom. The one who sits in quiet, loving agony beside the bed of a fragile little baby, watching the numbers fluctuate on the monitors. But I’ve been living through that experience for over a month now. When William was born, five and a half weeks early, he came careening into the world so fast that the only medical personnel at his birth were my nurse and the doctor. The neonatal team arrived shortly after he made his entrance, and I held him for a minute or two before they whisked him away to the NICU to hook him up to monitors and oxygen and i.v. fluids. Thus began the most painful, agonizing journey we have ever taken.

One of the hardest parts of William’s time in the NICU has been sitting by his bed and watching him struggle to breathe. He will be calm as can be, breathing quietly, then out of nowhere, he begins to arch his back and turn his head, straining for air. His little arms flail and he fights for the oxygen he needs. Sometimes the issue is a simple one to remedy – repositioning his head or suctioning out his mouth. But I will never forget watching him go through bradycardia, an frightening episode of dangerously low heart rate. A team of nurses rushed to his bedside to administer oxygen and possibly chest compressions to get him back to normal levels. I stood a little bit apart from his bed, watching helplessly as they worked to save my baby’s life.

Over the last few months, we have, at times, felt like William – fighting suffocation under the enormous pressure of this trial. We have entered the hospital hoping for good reports from the previous evening, only to find that he is receiving a blood transfusion, or that the nurses had to administer CPR in the middle of the night. In nearby bed spaces, mothers snuggle their little ones, feeding them from bottles or even nursing, while I watch the nurse hook up his next feeding to a pump and deliver it through his feeding tube. Every day that passes is an injury – another day that we didn’t get to bring him home.IMG_5832

So many quiet moments behind the curtain of bed space two, I’ve cried out to God, “Please do something…” And does he hear? Why are my prayers being met with more waiting, or even worse, more complications?

The man who penned the 130th psalm had many of the same feelings as I. He wrote, “Out of the depths I have cried to you, O Lord; Lord, hear my voice! Let your ears be attentive to the voice of my supplication….My soul waits for the Lord more than those who watch for the morning – yes, more than those who watch for the morning.” His lungs were crushed by the weight of the crashing waves as he struggled to cry out to his God, yet his soul was left waiting. How can one bear up under the pressure and yet wait patiently for God’s answer? Though the trial was not over, though he still felt the anguish of soul, this man of faith tells us the simple answer: “I wait for the Lord, my soul waits; and in his word I do hope.” Humility. Patience. And trust. Implicit trust in the merciful, kind God who is governing the storm that howls over my head.

 

Crying out to God from the depths is an act of faith, even if I don’t feel he hears me. I don’t have to feel full of faith to respond in faith. In fact, some of the most faith driven actions take place when I act in spite of my lack of confidence. As I respond in faith, however weak and tremulous it may be, the waves begin to lose their power to drown me. My breathing calms, my soul begins to rest, and I am quiet. And before I know it, my heart begins to sing, “In the day when I cried out, You answered me, and made me bold with strength in my soul.”

 

Cry to God from the depths, and he will always hear.