Just shy of twenty five years ago, they handed me my newborn son. I gazed at his chubby fingers and cheeks and marveled, listened to his hearty cry and thrilled. He was perfect. Almost. I held him for an all too brief period of time before they whisked him away for tests. You see, we knew, from early ultrasounds, that Nathan had significant kidney issues. What we didn’t know was the cause.
The diagnosis was bilateral hydronephrosis, secondary to bladder reflux. Basically, when his bladder contracted, part of his urine went out and part went up into the kidney, causing such pressure the kidneys weren’t able to develop normally.
“He’ll need a transplant by twenty pounds.” The doctor told me.
The first year of life Nathan was in and out of the hospital. He was a beautiful baby (NOT just my opinion, but voiced by many admiring passersby) and was always happy. So happy, in fact, that when he got fussy I would rush him to the doctor’s office to have his labs checked. The doctor would look at the chubby, smiling baby in my arms, roll his eyes at the paranoid mother, and order the lab work requested. A few hours later I got the inevitable call. “Get him to the ER immediately. His electrolytes are way out of balance.”
At the hospital my little fellow had to endure poking and prodding hour after hour. My heart would break each time they came to draw blood. Looking at me with tear filled eyes, he seemed to be asking why I didn’t stop them. His little arm would go limp in surrender to yet another needle. I wanted to scream, “No! You should be fighting this! It shouldn’t be such a normal event that you give in like that.”
Night after night, day after day, I held and tried to console him, tried to relieve his surgical pain, his fear, his confusion about why he was ill and in the hospital once more. I cried out to God, “Please! You can stop this!” I begged God to let me take the suffering. What had my perfect little baby done to deserve going through all of this? I hated being helpless. God could help, but God was silent.
Then, on our third hospital admission in as many months, God spoke to me. Not exactly in any audible form. I’ve discovered God likes to speak to me through stories and symbols and circumstances.
I was particularly angry with God that day. I was tired. Discouraged. Frankly, I was having a major pity-party. A boo-hoo why me moment. Then they admitted our son to the only “clean” bed (one in a room without anyone infectious in it) in the whole pediatric hospital. We landed in the middle of the pediatric oncology ward.
For the next few days I watched little children pushing IV’s down the hall, their hair gone, their skin pale and sometimes an ominous yellow. I met a three-year-old who smiled at me but couldn’t speak. She had been on the ward for a year after getting into her parent’s cleaning supplies and swallowing Drano. Her vocal chords, esophagus, and large portion of her GI tract were destroyed. For the rest of her life she would survive off of IV nutrition and breathe through a tracheotomy. I passed rooms where parents cuddled their wee ones as they rocked in the chair, and rooms where children cried with no one to comfort them. And I felt God symbolically spank my hand.
How many of those children would make it to the next Christmas? Mine would. How many would grow to happy and productive adulthood? Mine most likely would. Instead of complaining about the life we had, I needed to rejoice because my son would live. My beautiful, almost perfect baby boy.
Toward the end of that first year, they discovered what was causing the electrolyte imbalances. By the time he was three the final of many reconstructive surgeries was completed. He was a bouncy healthy toddler well past twenty pounds.
“He’s doing great!” The doctors told me. “His next danger point will be his teenage growth spurt.”
And he grew, steadily, healthfully. My beautiful, almost perfect, rambunctious young boy.
He left for college, met and married a wonderful woman, began an independent life of his own. Then little by little his labs declined.
The call we hoped would never come came a few weeks ago. Nathan’s kidneys can no longer handle the load.
It was like someone kicked me in the gut, strapped a band of iron around my chest, and constricted it tight over random intervals for the next few days. Feelings long forgotten were resurrected from the memory folder labeled, “Private, do not open” and were once again disturbing my safe place.
I reminded myself that technology is amazing and getting better every day. With dialysis or a transplant, he will most likely live a normal, happy life. Still, peace was evasive. It’s the unknowns that taunt us.
Having learned some things from my past, I desperately threw myself on the One who made my son. The One who loves him more than I do. The One who has planned my son’s purpose and future. The One who made him almost perfect. Peace is coming.
Still. It hurts to watch my son have to go through this and I hate that there is so little I can do about it.
By the end of the first week, I did a road trip by myself. My new daughter-in-law graduated from college and I was loathe to miss it. Nathan was confident he was stable and encouraged me to go. There was nothing I could do at home.
My all day drive was just what I needed. I prayed and cried intermittently. I listened to the same six songs over and over and over because God was speaking to me through them, assuring me, encouraging me to keep trusting in him.
Mid-morning, I felt the need to make a stop at the halfway point to visit my aunts and my uncle. I called and asked if they could meet me for a late lunch at the Cracker Barrel right next to the freeway on my way through their part of the country. I haven’t seen them in a while, they are not youngsters anymore, and I needed to treasure opportunities to see people I love.
I believe that day was once again God stepping in, not so much for the proverbial slap on the hand, but this time for the consoling hand on the shoulder, and encouraging shove in the right direction.
“Open your eyes.”
And I saw. I watched as my uncle treasures the woman he has loved all his life. She is battling cancer, yet she joked and laughed, enjoyed visiting and showed concern for the things I am experiencing. I observed my other aunt, who lost her husband to cancer several years ago, and is preparing to remarry. She commiserated, recalling her sense of helplessness as she nursed her younger son after a motor cycle accident years ago. No one thought he would live, but he has. I visited with my cousin whose only son was just acquitted after spending five years in jail for a crime he didn’t commit. He is emotionally broken. I saw the desperation of a mother who wants to help her son, but is powerless to do so.
“Open your eyes.”
The brother of a friend was hit by a car and lay in a coma for a week. His condition remains serious. A young lady dear to me is distraught over a breaking marriage. Another friend just lost her husband quite unexpectantly. As I look, I see so much pain around me.
I am reminded once again that my burden is but a pebble compared to the boulders some carry. I am reminded that my life is not to be lived just worrying about me and mine. I am learning to rejoice in the place God has me, and to open my eyes to those around me.
My son is a good, kind, and God-fearing man. My handsome, almost perfect, young man. Sure, his kidneys could use a miracle, I won’t stop praying for that. Meanwhile, we wait for “the perfect match.” I will live moments when the tears fall, when I awaken in the middle of the night and pray. Still, Nathan lives, and he is in all other ways healthy, both physically and emotionally, and will most likely continue to be so. For good or ill, I need to learn to surrender. To trust. To be thankful for what I have. I am learning to fill those waking moments in the middle of the night with prayers for others as well as my own.
I need to fear the unknown less and rejoice more that God has it all figured out. I need to be less selfish, less self-centered. I need to open my eyes and see the boulders other people carry. I can’t carry it for them, but perhaps I can help lighten the load.
I am a slow learner.
These past few weeks have been an amazing experience for me as I receive messages from many friends and even strangers telling me that they are praying for Nathan. I am moved and humbled by their love and concern. Thank you to all of you.
Are you struggling with some pain in your life? Is there a way I can pray for you? If so, please let me know. Perhaps together, we can lighten each other’s burdens, and be able to keep smiling for one more day.