I want to introduce you to a friend of mine who is going through a trial no mom should have to face. I’ll let her tell you her story in her own words. My desire is that this post will help you cling to God for the struggles in your life, that you’ll pray for this family and sweet little Ephraim, and lastly, that some of you might consider donating to help this family through this dark valley. I’ve known Rebecca since college and I absolutely love her. I’ll turn this post over to her now…
I have grown quite accustomed to living out of a suitcase. I wish I could say it’s because I’m a jet-setter and a world traveling adventurer but it’s nothing quite that glorious. In fact, many would consider it the exact opposite. My son was born with failing kidneys-Posterior Urethral valves, Vesicoureteral Reflux, and Renal Hypodysplasia, or so “they” call it. It’s just a whole bunch of hullabaloo words to say “Your son is dying”. At least, that’s what I would have said had you asked me what it all meant back when he was first diagnosed. As you can imagine, raising a child with a whole host of life threatening diagnoses’ inevitably means a lot of hospital stays, hence my intimate familiarity with living out of a suitcase. If you ever need tips on packing for a hospital stay— I’m your gal. I even have a few tricks up my sleeve on how to sleep comfortably on those sorry excuses for a pull out couch most hospital rooms have. Regardless of how comfortable I‘ve become spending my nights in a cold and sterile hospital room, I still have not grown accustomed to the sounds that often surround me-especially at night. I’m a sensitive soul, and just like recalling a joyous memory at the smell of a familiar aroma, noise, be it harmonious or horrifying, stirs my emotions easily. I can’t help but hear the whirring of my son’s feeding tube machine, his multiple IV drips and med pump machines, the random alarming of a pulse ox or his blood pressure being taken, the alarms of a heart rate too high or too low, the quickening of a nurses steps coming down the hall to rescue a child in distress, the cries of the tiny baby next-door who is barely visible underneath all the wires and the restless sleep of my precious firstborn struggling against the pain and discomfort his ailing body feels. I close my eyes as if to block out the noise, willing my raw emotions to stay at bay. My eyes flutter open to another all too familiar sound and I watch as the Children’s Helicopter prepares to land just outside our window, life-flighting one more child to this hospital with one more life threatening diagnoses. I’m heart sick and this time the tears fall unbidden. “I’ll never get used to this.” I whisper.
Oh, how I yearn to cuddle that baby next-door, to rescue these particular children from the effects of renal and multi organ failure, I long to pray over the child being life-flighted in, eradicate the need for life support machines of all kinds, I want to cure cancer, see every child in this hospital relieved of their pain and save the world. But even more than all of that, I want nothing more than to save the life of my own son. Flesh of my flesh, bone of my bone. Alas, I cannot save him. I cannot take his place. I cannot heal him, fashion him a new kidney or promise him a brighter tomorrow…only my Savior can do those things,…and I know He sometimes chooses not to.
I do not understand His ways, nor His thoughts, they’re so much higher than mine! The view from where I’m standing could not possibly reveal the picture of the whole horizon. I am so often at a crossroads left with only a choice. Faithful trust or foolish worry. Today, I choose to trust, praying for more miracles that only God can take the glory for. Tomorrow, I choose to trust, knowing His will is far better than my own. He is sovereign even if those miracles I pray for never come to fruition. Forever, I will choose to trust because there is no other Hero who is more qualified to rescue the sons of Adam and the daughters of Eve than Jesus Christ, my Lord!!! I cling to Him as my soul groans with all of creation in longing for His final return. I long to see Jesus make all things new, to set all things right in this world once more. We weren’t meant to die, you know. Children weren’t meant to die,…and yet, I often find myself sitting in a hospital room watching my son do exactly what he was never meant to do. Die. I’m reminded of it almost daily.
It seems almost surreal. Over dramatic, really. I mean, he isn’t really dying,…right? He can’t be. He’s only 4 and this stuff only happens in the movies…Wrong. He is dying. His organs have failed and short of a miracle, my son would no longer be able to survive without the life-saving need for hemo dialysis. Dialysis. A nightmarish word, really. My husband and I have spent over 4 years working, praying, and believing Ephraim was meant to journey on apart from the need for dialysis. We held on to the hope of a pre-emptive kidney transplant because staying away from dialysis meant we could bypass the reality that our son was really dying. His kidneys failed too fast for that and dialysis was our only hope to survive through the next week. Now, for the past 6 months my son has lived for that machine. We spend the better part of his week attached to it, a giant blood cleaning machine doing the work his kidneys failed to do. My family and I are habitually tired, chronically exhausted from juggling a 1 year old, a 2 year old and a 4 year old on dialysis, we struggle with disappointment, battle the feelings of being completely overwhelmed and yet we are so very grateful. Hopeful, even. God IS good. He will lead us through the valley of the shadow, He will provide wisdom along the way, He will pour out His peace upon us and bring us comfort when we haven’t any. We have seen His hand at work in the life of our son from the day we found out his diagnoses. I was 15 weeks pregnant and time after time, day after day doctors gave us no hope he would ever survive the challenges that came his way. Miracles happened, doctors watched in awe and our son grew to the old age of 4 going on 40. Every day is a celebration of another moment to enjoy him-and each other. Every day is a reminder that there is One who makes ALL things new, every morning, with every breath. Even living out of a suitcase, bogged down with burdens, or stumbling around in the darkness I have hope that sets me free. I’ve experienced what rejoicing in our sufferings produces; endurance, the strength of character and hope…and believe me, God’s Word says it perfectly, “Hope does not disappoint.” Romans 5:1-5
I want to encourage you as you read this; Whatever you’re going through, whatever you’re facing, I entreat each of you to cling to hope. While our expectations may disappoint us, hope, hope IN Christ-never will!
On October 24th, I will once again hand over my baby boy to be taken in to surgery for the umpteenth time (I’ve lost track,…) but this time my son’s life will be made like-new again. He’ll have the chance to live life apart from machines, to feel free to be more like a normal 4 year old, to act like a normal 4 year old. He gets a second chance at life as God has provided a living donor willing to sacrifice one of her kidneys in order to save my son. There are no words to describe such a beautiful gift. No one can explain it, it’s just grace. It’s beautiful. Please join with us and pray for Ephraim’s Kidney Transplant!
Want to read more about Ephraim’s Story and receive updates? Visit COTAforEphraimH.com and watch the video, read the updates, “Like” us on Facebook at “Ephraim’s Encouragers” and donate to help save his life. Praying for world transformation through Christ!
Come, Lord Jesus!
-Rebecca R. Harding