Updated: Aug 1, 2020
My son has been the one in the hospital. The one with a body covered in scars from IV lines, PICC lines, ECMO surgery, and countless needle sticks. But I’ve been the one breaking.
I’m a broken control freak. No doubt about it. I’ve been in recovery from that one for as long as I can remember. And every time I force myself to stop trying to control one situation, I realize I have been trying to control something else. In order to stop trying to be in control, I must deal with the fear that if I stop trying to control an area of my life it will totally fall apart. And what is the difference between Holy Spirit-giftedness in self-control and unhealthy controlling behavior? Do I control myself to be a responsible Christ-follower, or do I control myself because I want to fit into who society tells me I should be?
So I try to control my thoughts about control. And I try to control my self-talk about how I haven’t been in control. It’s a vicious cycle, to say the least.
When Eliana and Charlie were born, I locked down on some serious control. My research on nutrition, parenting, and theology converged into a perfectly controlled parenting plan. They would eat no sugar, no artificial dyes or sweeteners, no soy, and they’d drink only organic milk. I preferred they had no sweets of any kind until they were two years old – including fruit. Somehow I was going to give them a better chance at a healthy life than I could offer them by example. I was never going to yell, I was never going to wish the time away. I was going to soak in every single moment with them, always remembering how long I waited for them and how badly I wanted to have the mess and frustration of motherhood. I was going to teach them about Jesus, the Holy Spirit, and the Father in perfect balance, emphasizing none over the other. I was going to take all the streams of Christianity I had learned and merge them into a perfect and balanced theology. There were plenty of other ideas I had about perfect parenting too. I’ll spare you the comprehensive plan of action.
Enter my husband, father of my children, with his own ideas. Sugar is good and only mean people restrict it. Organic milk is a joke. He grows soybeans, so what’s wrong with soybean oil in everything? Yelling is a part of life and what normal families do. Homes should be super-sonicly clean and neat at all times. Other streams of Christianity are a little weird.
Now, let’s add in a newborn with complex medical needs… My ideas about natural medicine and no intervention in childbirth went right out the window.
I’ve been the one breaking.
Break as they break my water with an electric current because the bag of waters is so thick that it won’t break any other way. (I’d planned a non-medicated, non-intervention birth.)
Break as they slice open my body and pull my distressed baby out of my belly.
Break as the realities of low blood sugar, high blood pressure from tension, anesthesia, and shock hit me at once, causing a seizure while they take my newborn baby away with the words, “He’s very, very sick.”
Break as they take the baby to a NICU an hour away and I have to stay put in my hospital bed and recover from major surgery.
Break as I hear words that don’t compute: Down syndrome, pulmonary hypertension, ASD, VSD, hydronephrosis, unstable blood sugar, and more.
Break as I tear myself away from my older children to fly to the side of my dying newborn, too afraid to ask God for a miracle because I don’t even know what that will look like for our family’s future. But I’m also breaking because I’m devastated at the thought of losing my baby. Life isn’t supposed to be like this. Where ARE You, God?
There is little to no control in an ICU. Specialists and nurses do the things they are trained to do to save lives while you sit by and try to comprehend all the lines and tubes going in and coming out of your baby. They say words to you, ask your opinion, but you are blind with fear and crippled with shock. Other people tell you to take your medicine now, to take a nap now, to eat now, to pump now, to walk away from all the alarms going off now.
When you finally bring the baby home after too many days away from home and your older children, people show up and assess your baby. They tell you he needs therapies, they weigh and measure him and tell you how to feed him and how often and how much, the doctor tries to tell you when to put him to bed and wake him up.
While Redmond was in the NICU, my older children were cared for by their loving and capable grandparents, babysitter, teachers, and extended family. I was so thankful that I didn’t need to worry about them in the beginning, knowing they were in a place of comfort and security. But I wasn’t there to do the things I do every day to control their lives and help them become the people I think they can be. I couldn’t decide what to feed them, making sure to balance protein with vegetables, a little fruit, even less sugar, and make sure their clothes fit properly, matched, and were stylish. I couldn’t see their class papers and talk to them about what they’re learning, reinforcing the good things and redirecting the negative things. I couldn’t sing to them, laugh with them, or chase them around the house.
Cracking, breaking, crumbling… All my carefully constructed plans and building blocks lay in ruin at my feet.
As Redmond has gotten older, I still find my ability to control these things shaken. I have to focus on him, giving the other two what I have left. I can no longer helicopter around them, anticipating their needs, looking them in the eye every time they talk, etc. It happens sometimes, but not like I wanted. And in truth, I’m not sure that it’s the worst thing in the world for them.
My thoughts about healthy marriage and all the rules we received in pre-marriage counseling and marriage retreats – out the window. “Have sex with your husband every three days or his eyes will wander and he’ll turn to someone else.” Well, when you’re recovering from surgery, sleeping no more than 45 minutes at a time, fighting to keep a baby alive, and somehow trying to care for two other preschoolers, that’s just not happening. And shame on the folks who try to lay that burden on couples.
Shame on them for letting men think that if their wives don’t have sex with them every three days, they are somehow allowed to look elsewhere because they’re just dumb guys and they can’t control themselves. Baloney. Tell that to the couple who’s recently had a medical crisis and see where you land with them. I praise God for a strong and patient husband who takes his vow seriously.
Also, my sense of decorum and what I can and cannot say. Broken.
I’ve been the one breaking spiritually, mentally, and physically.
Spiritually: My theology of suffering has broken. It lies in crumbles at my feet. This prosperity gospel I didn’t even realize I’d bought into. This “If you believe it you can receive it RIGHT NOW’ idea doesn’t help anyone. It’s gone. I still believe in the God who parted the Red Sea and who supernaturally healed Redmond of a tension pneumothorax that should have killed him (among other miracles). But my belief that if you do the right things and have enough faith and trust in God, you can claim your healing and never suffer – that’s broken. I didn’t even realize I felt that way until my belief was crushed. Jesus was a man of sorrows, acquainted with grief. He said, “In this world you will have suffering…”
I knew that Rick and I were at high risk for birth defects and infertility when we got married at ages 36 and 47. That’s a big reason why Eliana and Charlie were born within the first 28 months of our marriage. But I also genuinely believed that God would protect us from birth defects and infertility. We had been faithful to Him (not perfect by any means, but a lot better than many – awesome thinking, I know). I fully expected God to fulfill His end of the bargain and give us healthy, beautiful, well-adjusted children. And He did! Eliana and Charlie are far above any expectations I had for my children.
Not only did I expect God to be faithful to me in return for my faithfulness to Him, but I insured that belief with lots of praise and thanksgiving for our healthy, glittery first two children. I would not take them for granted. I would make sure God’s good graces were full when it came to me because of all my gratitude. I made a point to get my health in better condition before my third pregnancy, and I lifted up my request to the Lord for one more child.
But nothing went like I expected it to or thought it should. My health suffered enough from the third pregnancy that we felt it was important to prevent any further pregnancies to keep me alive. The first two pregnancies were hard and a little bit concerning for doctors, but this last one was on a different level of hard. It really did break me. The decision to permanently prevent future pregnancies broke me. Grateful for the three I have, I still had really hoped for a fourth.
I’ve been the one breaking physically. Before my pregnancy with Redmond, I made positive changes and felt really good. I felt hopeful for a healthy future where I could run and play with the kids, not achy or inflamed or miserable. Beyond the breaking of his birth, I suffered a terrible infection that took months to heal and caused a lot of pain. The stress of life in the NICU and early months at home caused my body to drop weight drastically from the pure adrenaline I ran on all the time. But my adrenaline ran out at around 5 months and my body reacted harshly. As suddenly as I lost weight, I gained it back at an alarming rate. Unfortunately, I’m the type of person who has a hard time maintaining a healthy weight if it isn’t a constant source of focus and effort. Since all my effort and focus were on the baby, things got out of hand quickly. I’m now trying desperately to get back to a place of health and wholeness.
I’ve been the one breaking mentally. I waited to see the doctor about my own mental and emotional health until Redmond was about 6 months old. I only went at the urging of several people I respect, convinced that my response to my circumstances was in keeping with reality and mental health. I still believe it was, but I also realized that the strain of my circumstances was more than I could handle alone. The doctor diagnosed me with postpartum depression. After reluctantly taking the medicine prescribed for about a month, I felt good enough to get evaluated for post traumatic stress disorder. The therapist who diagnosed me with that disagreed that I had a mild case, as I thought. She said it was a clear case of PTSD. She did therapy with me called EDMR. After a few months of intense therapy, I was healed of PTSD. I thought I was also healed of PPD and asked my doctor if I could stop the medication. She encouraged me to continue on it for six more months. I’m very thankful that she did, because I am still struggling.
The weight of the load of managing Redmond’s medical issues is at times more than I think I can carry. Hours spent on the phone with doctor’s offices, insurance companies, pharmacies, and then therapy and feeding him and just trying to get him to meet the next physical milestone… They add up. I am a grateful receiver of the help the medicine offers.
When I say I’ve been breaking though, I don’t mean that I’m lying in pieces on the floor. Rather, I’ve been cracking here and there, learning to bend, learning to bow down more. My will has been breaking. My stubbornness and pride. My vanity has all but broken right off. I’ve been breaking free from shame, from lies I believed, from selfishness, and from sinful silence. What lies on the floor in a pile of dust are the things that needed to go.
All this breaking has led me right to the feet of Jesus. I have cried out to Him more in the last 14 months than ever in my life. In anguish, in worship, in pain, and in rejoicing – crying out.
All this breaking has changed how I pray. I used to have a daily practice of following the model of The Lord’s Prayer where I disciplined myself to address God as my heavenly father, to praise Him, to submit myself to His will above all else, and then I could make my requests. The requests part was by far the largest part of the prayer. It was the part I headed for after I jumped through the hoops of praise and submission.
I don’t follow the model any longer. It’s not that I don’t think it’s a good practice. It’s simply that I don’t have time or energy to be so specific. These days most of my praying is acknowledging God’s sovereignty over my life and offering my submission to His will. Most of my praying is in thanks and praise for what He’s already done and what He’s going to do. I spend a little time declaring life over my son: “The Lord bless you and keep you, the Lord make his face to shine upon you, lift up your countenance, and give you peace.” I add to the biblical prayer, “The Lord heal your body and free your mind. The Lord watch over you with ministering angels and give you everything you need for life and godliness.” I don’t pray for his wife, although I believe it’s possible that he will marry. I don’t pray for his children, although I’d love for him to be able to have them. I don’t pray for his future in specifics. I simply open my arms and pray for God’s will to be done in him and through him, and that his life will bring glory and honor to the Father.
I have prayed for him very specifically to be healed and whole, to have no more health problems. I have prayed for him very specifically to have the mind of Christ, eyes that see truth, a mouth that honors God, and a heart that loves everyone. But I can’t bring myself to pray that he will have things as I think he should. Every day I have with him is a miracle and I try to live in that grace and not try to figure out the rest.
I used to pray very specifically for the other kids too. I believe those prayers are always before the Lord and He understands why I don’t keep repeating them every day. He knows my heart and has heard my cries. Instead, I pray for Eliana and Charlie to be full of the fruit of the Spirit, to have wisdom, and to be at peace. They are God’s workmanship, created for God works. They are the head and not the tail, above only and not beneath. I have prayed for their future spouses and children. I have prayed for them to be well-liked, to be loveable, to be healthy and smart and fun. I want all those things for them still. But I don’t think God needs my direction in those matters.
What hasn’t broken in me is my will to fight for my children. Redmond’s situation has caused me to wake a sleeping giant within me that was long-ago silenced. I have very little concern for what anyone else thinks of me if it affects the health or safety of my children. I will advocate on their behalf. I will stand my ground. The nurse in the ER can roll her eyes and spew the words, “Special needs mom” with a knowing glance. WHATEVER. I have been the one keeping him alive for the last 14 months. Be thankful you have me to give you all the information.
I didn’t think we were “that family.” I didn’t think we needed to learn about disabilities or try to know other people with them because we weren’t affected by those things. As strongly as I felt that God wouldn’t do that to me, I never thought of what that meant – that I thought God would do that to “them” because somehow they deserved it. My rotten thinking has been broken. Those other families didn’t do anything to deserve their disabled children either. We live in a broken world and broken things happen sometimes. It’s as simple as that.
An insurance case manager asked me last week what caused Redmond’s Down syndrome. The question confused me. I answered from a medical perspective, saying, “It’s standard T21. We don’t carry the gene that predisposes him to it. We just won the lottery.” She laughed nervously and said, “So you aren’t terribly old or anything?” I almost dropped the phone in shock. She quickly added, “I mean, I’ve been on the phone with you for an hour and you sound really young.” Very calmly, I told her that I am actually nearing the end of my fertile years at the ripe old age of 42. But my age didn’t cause this extra chromosome. Anyone can have a child with Down syndrome. She quickly tried to explain that she was talking about women in their 50s having babies. I handled myself well in the moment, but I was really irritated.
When Redmond was born, the phrase, “My old eggs caused this,” echoed through my mind. I was mortified. People would look at me and know it was my fault. I was greedy and stupid for thinking I could beat the odds and have 3 typical, healthy children at my age. At my husband’s age. But the truth of the matter is that we didn’t care about the odds. We knew that we would love whatever baby God gave us, that we would nurture that child with all our hearts, that we would be the absolute best parents we could to any child we had. We knew the statistics and we decided that a child was more important than society’s standard of perfection and the image of our family to the outside world. (As it turns out, “old eggs” have nothing to do with Down syndrome. It’s actually something that happens because of a lack of folate, which the body is less capable of absorbing as a woman ages.)
Redmond Samuel Wyse was planned by God from the foundation of the world, born to a 41 year old mother and a 53 year old father. And God has a tremendous plan for his life.
Breaking and broken. That I am. And I greatly treasure the child that has allowed me to become pliable in the hands of the Heavenly Father, the child who has taught me so very much in a short 14 months, the child who takes my need for control and laughs. This beautiful boy has broken me in the best possible way. He has driven me, bleeding and crippled and blind, to the feet of Jesus. And what does Jesus do for the bleeding and crippled and blind? Does He not put his hand on their heads, call them to their feet, heal their bodies, and send them on their way to proclaim His great goodness? Here I am, Lord. Send me.
Jesus’ body was broken for me. Who am I to demand anything of Him? I am His grateful, broken servant – and I praise Him for the breaking. He takes great joy in remaking the broken into what He intended from the beginning.
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