***This post is a continuation of my previous post, Fear, about the birth of my recent child who had severe medical complications and Down Syndrome. To read more about Redmond and our story about him, you can see my public Facebook posts beginning March 1, 2017, and click here.***
In the middle of my struggle with fear surrounding Redmond’s birth and the first couple months of his life, there were pockets of peace too. Although fear threatened to swallow me up, I didn’t have panic attacks. I didn’t come undone. I kept putting one foot in front of the other, and I used the tools at my disposal to get to peace.
From the moment I knew I was pregnant with Redmond, a sense of dread and unrest came over me. I spent the first two weeks after that positive pregnancy test praying desperately for God to intervene in whatever was wrong. I gave Him my permission (as if He needed it) to take the baby if there was something terribly wrong. I waited for a miscarriage. I could not shake the sense of dread.
After two weeks of crying out to God, I felt His presence one morning like a soothing balm pour over me. My hands flew to my belly and the words that came to me were, “Life and health, joy and peace.” Peace came with those words. Every time the fear and dread tried to return, I comforted myself with those words.
The morning of our 20-week ultrasound, which was an extra-fancy one for high risk pregnancies, I felt like I was trying to walk in mud. My feet simply wouldn’t go. I was stuck. It was everything I could do to lift them up and move them forward, so afraid of what I might find out that day. After the hour-long ultrasound, we were ushered into the grim-looking doctor’s office. As she launched into a lecture about managing gestational diabetes, I struggled to comprehend what she said.
Finally, I stopped her and asked bluntly, “Is my baby okay?”
“Hmmm?” She looked up from her paper, confused.
“Is. My. Baby. Okay?”
“Oh, your baby is fine. It looks perfectly healthy. Were you worried?” Clueless doctor.
“No Down Syndrome?” I remember that I specifically asked about that. They measure EVERYTHING in this ultrasound. A friend told me how she was warned that her daughter had a shortened nasal bone, which is a soft marker for Down Syndrome, but her baby was born just fine.
The doctor explained to me that they can’t tell for sure without several more tests, and even then they can only tell you something like if there’s a one in four chance that the baby has DS, but she’d be happy to run them if we wanted them. At the point where we were, she felt confident that there was only a slight chance that the baby had DS.
Relieved that the extensive ultrasound had shown no markers for DS or other birth defects, we again declined further testing. We agreed that we would love and accept any child God gave us, and there was little point worrying ourselves to pieces about it before we could know 100%.
I spent the remainder of the pregnancy feeling harassed and annoyed by the management of gestational diabetes and hyperemesis gravidarium (which included extreme motion sickness, making me sick even when I walked). Pregnancy is a real challenge for some of us, but I determined that 9 months of difficulty was worth the lifetime of joy that a child brings.
Towards the end of the pregnancy, I received weekly ultrasounds and non-stress tests. The baby’s heart never did what it was supposed to during the NSTs. It was supposed to go up 15 beats per minute for 15 seconds, but it never did. So I’d get another ultrasound, which would confirm that everything was okay, and we’d go on another week. We also knew that I had high amniotic fluid and the baby had a small amount of water around the kidneys. Both of those can be indicators of DS, but DS babies typically measure small, especially their heads. Redmond topped out in the 98th percentile with an average head size.
There were multiple tests and concerns from the doctors with my previous pregnancies and everything worked out just fine. I kept reminding myself of that, repeating the words, “Life and health, joy and peace“, and doing my best not to worry.
On the morning Redmond was born, I watched a YouTube video by a naturopath about managing anxiety. I’d seen it before and was looking for it to send to a friend. During a time when I should’ve been the most anxious, I was fairly calm. When Rick came back that morning, I firmly told him we had to get to the hospital. I was very concerned about the baby, but I wasn’t freaking out. When the nurse told me that the midwife was coming to break my water, I stayed calm. When they told me that the baby was in distress and I was headed toward a c-section, I handled it well. The words of the doctor replayed in my mind. I had a choice how I would handle the situation. God had promised me “Life and health, joy and peace.”
As I stumbled through those first few days of Redmond’s life, I found it hard to comprehend the things the doctors said. The words they used were terrible, and they definitely brought fear with them, but I also had a sense of peace. My baby would be okay. He didn’t have Down Syndrome. It may look like that, but the test would come back clear. Wouldn’t it?
I had to sort through what was numb denial, what was actually happening, and what might happen in the future. God might have promised me life and health, joy and peace, but at that moment I was facing sickness, fear, and sadness.
At my command, Rick left my side to be with Redmond and calmly talked to him and held his hand so our baby would sense something familiar in all the chaos. When I squeaked out the words “Down Syndrome” and “sickest baby in the NICU” to my sister, barely able to make my mouth form the words, she dropped everything and flew to my side. When the doctors determined that Redmond needed the last-resort heart and lung bypass (ECMO), my mom came to be with us. My dad, who was working and couldn’t take time off, hit his knees. For that first week of my son’s life, my dad fasted and prayed. He barely slept, waking every few hours to get back on his knees and pray some more. He prayed for Redmond, but he also prayed for me and the rest of our family.
When fear tried to take me over, I had a husband like a rock, standing firm and telling me it was all going to be okay, I had a sister and mother helping me laugh and letting me cry. I had a daddy interceding for me. He reminded me that I found strength and felt God’s presence in music. Thanks to his prompting, I turned on the praise music and sang my heart out.
Every morning while I got ready to go to the hospital, I sang. When I went to the pump room for 20 minutes every three hours, I listened to praise music and sang. I sang over my son. I sang praise to God. I couldn’t concentrate to read the Bible much. I barely had words to pray. But I sang and sang and sang. Phrases that stand out to me from that time…
The waves and wind still know His name
It is well with my soul
This mountain that’s in front of me will be thrown into the midst of the sea
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well.
When I listened to the words of the doctors and nurses, when I got my eyes off Jesus, fear snuck in. I’d often find myself staring at objects, trying to figure out if I was crazy for believing that my baby would be okay, if I needed to accept reality and stop living in denial. But I had this peace that he’d make it through. We’d take this precious boy home with us. He wouldn’t need heart surgery. Surely by the time we left, he’d be off oxygen and his feeding tube.
During my pregnancy, “It’s Your breath in our lungs, so we pour out our praise, pour out our praise…” were song lyrics that swept over my heart. I’d think of the baby growing inside me and pray for his lungs. Another song that ministered to my heart said, “Your love is like radiant diamonds, bursting inside us, we cannot contain… God of mercy, sweet love of mine, I have surrendered to Your design. May this offering stretch across the sky, these hallelujahs be multiplied.” I’d think of the cells inside me, dividing and growing (bursting!), only able to be contained for about 9 months. I’d think about my “offering”, submitting to another difficult pregnancy and trying so hard to be gracious and patient through it, and beg God to honor my sacrifice. As I sang those songs, there was no medical evidence that he had any issues at all.
My main problem finding peace during the storm was not questioning God, but questioning myself. Was I sane to believe Redmond would be okay? Was the peace I felt actually shock and denial or a gift from God? Or both?
Much of my fear stemmed from the knowledge that God is running the universe. He has very seldom seemed to take my wants or desires into account as He does, so I braced myself for the gut punch of disappointment, the disbelief that what I had hoped for was gone. My brain played tricks on me. Strong medication taken for pain from surgery affected me. I felt acid rising in my throat, burning me when I tried to pray for God to save Redmond’s life and heal him. Hope and peace were mingled with fear and dread. Surely God would do what was ultimately best for us, but how much was I going to hurt in the process?
I submitted myself to His will and waited to see what He would do. I asked my friends to pray because I couldn’t. I allowed the Holy Spirit to intercede for me with those groans I hear so much about.
Romans 8:26 – 27 says, “Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the word of God.” (NKJV)
Please save my son, Lord. But not my will but Thine be done.
I kept hearing the words, “He spared not His own son.” I had no guarantee that He would spare mine.
Please hear this point before you close your computer and shut out these horrific thoughts… Please understand me. I knew that if God did not spare my son, He would give me the grace to get through the horrific loss. I had no doubt that if my son didn’t make it out of that place alive, God was indeed running the universe and it was somehow in His perfect will for my life to take Redmond home so early. The thought horrified me, but even in the worst moments, I knew that God would walk me through it all. I was not alone.
Knowing so well that God owes me nothing, that any loss I face is nothing compared with the trauma of His own son’s death, I relish even more, savor, and bask in the beautiful YES that He gave me.
My precious baby boy, a cuddly bundle of smiles and love, sleeps soundly in my arms. This baby who came so close to death, who should be terribly delayed and have all kinds of problems as a result of the very medical interventions that were used to save his life, appears to be doing just fine. He coos and “talks”, sings with me. He actively rolls from back to front and back again, chewing on his thumb and reaching for toys. He laughs out loud, startling himself with the sound. He’s growing like a weed, wearing nine-month sleepers at 4.5 months old. He sighs deeply when he sleeps, burying his face in my neck, and tries yet again to pull the oxygen tube out of his nose.
He’s still on a feeding tube, still needs supplemental oxygen, which I wish away many times every day. But after all he’s been through, what are these little annoyances? I adjust my attitude to thanking God for these tools that I have to keep Redmond healthy, thriving, and growing. He should’ve had hearing loss, but he hears perfectly. He should’ve needed heart surgery, but the holes in his heart are closing. Pulmonary hypertension is GONE. He’s active, alert, and cheerful. He sleeps through the night like a little champ.
The chromosome test for Down Syndrome came back positive, and it took us a while to deal with that. He has an extra chromosome, which was present at conception and not a result of the complications of pregnancy or the medical treatment he needed early on. With it comes low muscle tone and the possibility of many other physical and intellectual handicaps. I have prayed over this child though, emboldened by God’s miracles in his life so far. I pray that he has the mind of Christ, that his eyes see truth, and so on. I pray that he is ABLE, not disabled.
A few days ago, I whispered to God during a rare moment of quiet, “And please God, would you heal him from Down Syndrome?” Very swiftly and firmly, I heard a voice whisper back, “It’s a gift.”
My heart lurched.
Many parents of children with DS report that they feel very lucky to have a child with DS, and Rick and I have shaken our heads in confusion. Why are we lucky to have a child with physical and intellectual impairments? Is low muscle tone and a congenital heart defect a gift?
But this God I serve, He works in mysterious ways. What is mystery to us is great glory to Him. And so, although I cannot claim to understand at this point, I have decided to embrace this gift in the same way I embrace the God I do not understand.
My child, the one with the extra chromosome I so greatly feared, is Life and Health, Joy and Peace to me. He is Life and Health, Joy and Peace to the entire world. The fact that he has a chromosomal abnormality is not a burden, but a gift.
I will still pray for him to be completely healthy and whole, to have perfect vision and a strong body. I will still pray for him to be able to walk and talk with ease, to be able to comprehend all that he needs to understand in this world. This child, and his amazing siblings who have embraced him with all their hearts, will drive me to my knees more than anything else ever has. I will pray for all three of them with all my heart. But Down Syndrome is off my prayer list. I write this with a thankful heart, full of peace: It is our mysterious gift.
Photo credit: the beautiful, blue, professional ones are all by ErikaMarie Photography. The rest are me.
Although there are many things I don’t recall, fear is one thing I remember well from the first few days of Redmond’s life.
Unplanned c-section because the baby was in distress. Baby taken from me without so much as a glance. Phrases like “very sick”, “breathing problems”, “Down Syndrome”, and “NICU” scatter through my mind.
Day two of his life, words like pulmonary hypertension and oxygen levels suddenly became things I needed to understand. Lungs and heart that weren’t working right. Ventilators, nitrate, blood sugar, monitors, and nurses and doctors and help. Lots and lots of help.
“Sickest baby in the NICU.”
I was so numb and confused, in shock, the words barely phased me. But they got the attention of the nurses and doctors who cared for me after my c-section. Suddenly, less than 24 hours after surgery, I was showered, dressed, given a fist full of prescriptions, and driven to the NICU an hour away to sit with my baby, hold his hand. The baby’s doctor stared at me in shock. “Why are you here. In JEANS?” I wasn’t sure where else I was supposed to be or what I should’ve been wearing. I wasn’t sure what I was supposed to do. He gave me a lecture about how I needed to take care of myself if I was going to take care of my baby. I was to eat regular meals, sleep as much as I could, and not push myself too hard. I was to remember that I’d just had major surgery and take it easy.
I heard the doctor and followed his orders. Through blind tears, I allowed myself to be wheeled around in a wheelchair, driven back and forth from the hospital to the Ronald McDonald House, and told when to take the medications I needed for pain. I tried to sleep, but had to wake up to pump every few hours. Then I’d wake up in a panic every morning, wondering what was happening with my baby and how I could just leave him in the hands of strangers.
The numb confusion started to lift when the phone rang early on the morning of his third day of life. We’d been told the night before that he’d made it for the first 36 hours, so he was not likely to need to be transferred for the one kind of care our hospital could not offer. But when the phone rang, we learned he was to be transported to a bigger hospital, about 40 miles away, to have the chance to go on a heart and lung bypass machine. He might not need it, but they didn’t want to wait any longer to chance it.
Redmond was very sick. He needed more help than what he could get at the hospital he was in. Suddenly, I was very aware that this was serious. My baby might actually die. I jerked into action, signing papers and asking questions and trying to focus on what each person said to me.
Emotions flooded over me. Guilt. So much guilt. I was 41 years old and the likelihood of Down Syndrome increases exponentially with the age of the mother. I had gestational diabetes that wasn’t well-controlled, in spite of my efforts. He had complications from that. If I had been in better shape. If I had tried harder. If I had listened to my gut and ignored the strange rules from the doctors and nutritionists to eat carbohydrates, he wouldn’t be so sick. Shame. I was so ashamed. Memories of studies I’d read stating that the age of the father is now known to affect the baby’s health as well flooded over me. My husband was 52.
Illogical, panicked thoughts woke me up with a jerk every time I fell asleep. I was like King David of the Bible. God took the son of King David and Bathsheba. David fasted and prayed for the child’s life, but when the baby died, he got up, washed, and ate. In my muddled state, I forgot that David was punished by God for serious sin – including murder and adultery. My son was not the result of any sin, but I had irrational thoughts that he would die and I’d have to get up, wash my face, and get on with life. (I discovered that one of the medications I was taking for pain sometimes caused people to have terrible dreams and jerk awake in a state of panic.)
I flew down to the baby’s room at the crack of dawn, walking rather than taking the prescribed wheelchair (because my husband wasn’t moving fast enough for my panicked mind), nearly hyperventilating with fear. I couldn’t breathe. I just knew I’d arrive in his room to find him gone, hospital workers waiting to tell me in person, rather than call and disturb the last peace we’d ever know.
But there he was, laying quietly, an enormous machine run by four people beeping and humming, keeping him alive. ALIVE.
I dissolved into tears, breathing for what felt like the first time in minutes, barely able to stand with the relief that flooded me. As they stared at me, I tried to explain. But the words wouldn’t come. Instead, I stumbled to his bedside, took his limp and swollen hand, and poured out the words that God placed in my heart in that moment. God had felt so far away from me, but in that moment His presence rushed in and I spoke truth.
“Redmond Samuel Wyse, you are a gift from God. Every moment of your precious life is a gift. And whether I have you for six days, six months, six years, or a lifetime, I will be grateful for every single moment. You are an answer to my prayers, and I cherish every moment I’ve had with you – every moment of that horrible pregnancy, and every fear-filled, terrible moment since you were born. You are a gift and I’m grateful for you.”
And with those words that I hadn’t felt just moments before, things changed. Love rushed in, replacing numbness and thoughts that maybe it would be better if he didn’t make it. Love replaced efforts I’d been unwittingly making to protect my heart from the pain of losing him. Love reminded me that in Christ, every life is precious and worthwhile, even the lives of babies with Down Syndrome, congenital heart defects, and pulmonary hypertension. Love rushed in, reminding me that God is greater than any fear, any doubt, and any lie from Satan.
That was very early on a Sunday morning. It would be six very long days before he’d be taken off the heart and lung bypass machine. It would be six scary days of praying that he wouldn’t have a bleeding event. It would be six days of feeling helpless, eating hospital food that was brought to me, pumping to provide milk for him when he was able to eat, sitting on bright orange chairs in front of large windows that overlooked a massive cemetery, riding in a wheelchair back and forth to the Ronald McDonald House, jumping every time the phone rang. But on the sixth day, he was taken off the machine and his heart and lungs functioned well enough to stay off it.
The next day, when he was ten days old, I was able to hold him for the first time. I cried the ugly cry, tears and sobs and gratitude all mixed into a snotty mess. He was covered in tubes, wires, cords, and contraptions. It took three people to pick him up to place him in my lap. His ventilator was pinned to my shirt. I couldn’t get close enough to kiss him until they put him back, at which time the nurse held his little head close to mine for a quick kiss. But I was holding him. I sang him songs and marveled at his tiny body, then fell asleep in a blissfully rare moment of relaxation and joy.
For a week after that, I was able to hold him once a day. One time, Rick held him, although he grumbled quite a bit about it, worried he would pull on one of the tubes going in and out of him, worried he might break the fragile boy.
When he was four days old, the day they put him on the bypass machine, I called my in-laws and asked them to bring the older kids up to meet their baby brother. I was seized with fear that he would die before they got to meet him. It suddenly became a terrible fear. How could I explain to them that the baby died if they never got to see him alive?
And so they came, arriving just moments after Redmond’s surgery to have giant tubes inserted into his neck. The tubes allowed blood to be pumped out of his heart, artificially oxygenated by the machine, then pumped back into his heart. It was a terrible time for a visit, straining the nerves of the nurses and specialists, but still very important to me.
The kids were held up by their daddy, allowed to touch the baby’s hand, and then taken out quickly. We went to a play area in the hospital where the kids could get out some energy. I sat in my wheelchair and cried, the numbness worn off, so very sad that my baby was fighting for his life in another part of the hospital. Sad that I couldn’t run and play with my older kids while I had them with me. Sad that I had ruined our perfect, lovely life, free from hardship and pain.
A few days after the bypass machines rolled out of his room, the fear in my heart began to let loose a bit. When they took him off the ventilator, the fear let go some more. Every step along the way, fear has had to go, little by little.
Today, at home with weeks having passed without any need for hospitalization, fear only pops up from time to time. It’s still hanging around, but it isn’t hovering, dark and sinister, taking up all the space in my mind.
“God hasn’t given me a spirit of fear.” It’s the truth. Fear isn’t from God. But it’s very real when a baby’s life hangs by a thread. God gave me ways to manage fear and get through it, but it was very real and present.
Those early days in the hospital, I kept looking around for someone to come and offer me a temporary fix for the fear and sadness. Where’s the wine? Where’s the Xanax? Where’s the massage therapist to work the stress out of my muscles? Where’s the counselor to help me with these crazy thoughts?
The people that kept showing up, over and over again, were my church’s pastors. They prayed. They sat and listened. My sister and mom helped me remember that in the worst of times, we laugh to get through it. We find the funny, even through our tears. The nurses and doctors didn’t offer me a temporary fix. I didn’t take one nerve pill, didn’t drink one drop of alcohol. I slept. I ate. I leaned hard on my husband. I sang praise songs. A few days before we left the hospital, I got a massage. A social worker showed up one day and helped me work through some of my guilt and shame. Then I never saw her again.
I don’t know how to wrap up this post. I could write and write and write. I’m not sure I’d ever run out of words. In fact, I have written and written. Thousands of words. I try to edit them down and just write more. In the coming months, I’ll try to post them. I’ll try to share a bit of what this has been like. And you’ll have to forgive the repeats and the stumbles and the grammatical errors. Or point them out to me so I can fix them later.
All I know to say in closing is that God has not given me a spirit of fear, but fear snuck in anyway. What God did was help me through my fear. What God continues to do today is help me through the fear. Gratitude is slowly taking over as I cuddle and nurture the sweet, sweet baby boy He placed in my arms. My heart is at peace.
I’m so pleased to introduce you to our second son, Redmond Samuel Wyse. He has had us on quite a roller coaster ride for these last 23 days, some of which you may already know from my public Facebook posts. He was born on Wednesday, March 1st, 2017, at 4:21 p.m. in our local hospital. He weighed 8 pounds, 12 ounces, and was 20 1/2″ long. He was born just before 38 weeks, via an unplanned c-section.
At around 37 weeks into my pregnancy, Redmond shifted from a very active baby to not moving much at all. The midwife and OB had been supervising my pregnancy closely because of gestational diabetes. We had some warnings that his heart might not be exactly as it should be, but repeated ultrasounds showed no reason for concern. Redmond moved less and less that week, which I attributed to his growing size and getting squished in there. But Wednesday morning he stopped moving all together. I tried everything to get him to move, then decided we needed to get to the hospital right away. I began to panic, afraid I had waited too long.
As soon as we arrived at the hospital, the nurse pulled out the doppler and we heard his heart beating. I was so relieved. Although his heart was beating, they soon realized he was in distress and a c-section needed to happen right away. I was able to remain calm until he was out, but then I knew something was very wrong. They didn’t let me see him and suddenly my world turned upside down. The very wise anesthesiologist gave me something for anxiety. I sent Rick to be with Redmond while they worked on him and I slept in the recovery room.
That night, Redmond was taken to a larger hospital with a Neonatal Intensive Care Unit (NICU). He’d been put on a ventilator and I was only able to see him inside of a closed travel crib for a few moments. Too medicated to fully grasp what was happening, I went back to sleep. I was aware that there was a problem, but felt completely numb. It’s strange to write those words, but I believe that was actually the very thing I needed at that time. How could I have handled the weight of what was happening to my son, totally unable to be with him or do anything to help?
The next day we were told that Redmond was the sickest baby in the NICU and they were not sure what to do with him. I was released from the hospital less than 24 hours after my c-section, driven home by a wonderful friend who is also a nurse at the hospital, and was soon on my way to see my baby about an hour away. My sister dropped everything that day, got on a plane from the Carolinas, and actually beat me to the NICU. I am so grateful for her and all she did over the next several days to keep me calm and focused, asking intelligent questions when I could think of nothing, and buying a large quantity of snacks (and supplies)!
A few days later, Redmond was transferred to a larger hospital about 80 miles from our home. The hospital he’d been in was excellent, but had done everything they could do for him. They felt like a treatment called ECMO (for more info, watch a video about it here: http://www.mottchildren.org/conditions-treatments/ecmo) was what he might need. Redmond had several heart issues and his lungs weren’t working like they were supposed to work. ECMO, a heart/lung bypass, would allow them to rest and have some time to start working. The photo below is what his room looked like with the ECMO machine, ventilator, and other equipment he needed.
When he was just 3 days old, he was put on ECMO. We had our older children, Eliana and Charlie, come up to the hospital with their grandparents to meet him. We weren’t sure if it was a good idea to let them see him with so many things attached to him, but decided they needed to see their brother alive. It was a terrible thing to have to decide, but they handled it very well. We allowed them to briefly see and touch him, then we took them into a play area in the hospital. While they ran and played, I sat in a wheelchair and cried. I cried because this short period of time was all I had with them and I couldn’t even play with them (c-section recovery). I cried because my baby was in another room fighting for his life. I cried because I was hormonal and exhausted.
Redmond was on ECMO for six days. They were terrible days, full of ups and downs, alarms going off constantly, no fewer than 2 people in his room watching him at all times. He had two large tubes in his neck and was medically paralyzed. His chest didn’t rise and fall, he was puffy and discolored, and he looked like a lifeless doll. Often there were 4 people watching him – 2 nurses and 2 ECMO specialists. There was barely space in his room for us. We often walked out of the room to sit on nearby chairs and get a break from the sound of the alarms.
On March 7, when he was just 6 days old, we were startled by an early morning phone call from the nurse practitioner. Overnight, Redmond had developed a tension pneumothorax, or an air pocket outside of his lung. It was causing his heart and other organs to be pushed off to the side, which interfered with ECMO. The standard treatment is a simple chest tube, but that was extremely risky for him because he was on blood thinners. A chest tube brought with it the risk of internal and external bleeding. Without the chest tube, ECMO couldn’t continue successfully. That kind of uncontrollable bleeding didn’t bode well for him either.
As the medical team discussed how to handle it, I prayed with all my might. “Please God, give them wisdom, creativity, and knowledge. Help them to find a way where there seems to be no way.” God chose to speak through a pediatric surgeon. He said, “When we don’t know what to do, sometimes it’s best just to wait.” They all agreed to give Redmond 6 hours, repeat the chest x-ray, then do the chest tube if necessary. They made a plan for the chest tube and continued on their way. I called on everyone I knew to pray for that 2:00 p.m. deadline. Please, God, give us a miracle.
At 2:00 p.m., the chest x-ray was repeated. Our pastors had come up to be with us while we waited for the news. As I sat on the edge of a bright orange chair outside his room, the nurse practitioner walked up and told me the news. “The pneumothorax is gone. His heart and everything else have lined back up correctly. No chest tube is needed.”
I almost fell off that chair with gratitude. Sobs of relief came rushing out of me. God had answered our prayers with a miracle. The nurse practitioner, who has never mentioned God to me, agreed that it was a miracle. She had never seen anything like it in 21 years of working in the NICU. That day Redmond turned a corner. Before that day, ECMO specialists, nurses, and doctors were constantly confounded about him. He was difficult and touchy. Anytime they needed to move him for any reason, alarms went off. After that day, the reports changed. He was improving. He was improving more. He was improving faster than they expected. Blood cultures, labs, and other tests looking for other problems were coming back negative.
When he was 9 days old, he was able to come off ECMO and tolerated it well. I held him for the first time when he was 10 days old. He had so many things attached to him that it took 2 nurses and a respiratory therapist to put him in my lap. When he was 15 days old, he was able to get the ventilator out. When he was 16 days old, I heard the amazing sound of his cry for the first time. When he was 22 days old, he was completely weaned off IV medicines and his PICC line came out, he got his Foley catheter out, and I was able to pick him up by myself to hold him. When he was 23 days old, he was switched from a c-pap breathing ram (forced air) to nasal cannulas (supplemental oxygen), which is one step away from breathing on his own.
We are looking forward to how he reaches the next milestones – coming completely off of oxygen and learning to drink from a bottle.
We have seen so many miracles along the way. I’ve made my Facebook posts about him all public, so I won’t rehash every one of them here. But we stand in awe of God and the way He has answered our prayers.
Rick and I have been mostly separated from Eliana and Charlie since the day Redmond was born. We’ve been home a few times, very briefly, and are extremely grateful for the ability we have to stay with our baby. Rick’s parents and our amazing babysitter have provided so much love, support, and care for them that sometimes we wonder if they even miss us. They’ve been able to keep to their regular schedule and come up to visit us several times. We hate to be away from them and miss them terribly, but are so thankful for the excellent support we have at home.
We’ve been staying at The Ronald McDonald House, which has been a tremendous blessing. We will be lifelong supporters of their charity because of way they’ve helped us. Not only do they provide housing for families whose children are in the hospital far from home, but there’s typically a meal provided every day, as well as countless other grace-filled gestures.
Redmond has some things that will continue to challenge us as he grows. We’ve been told he has a ventricular septal defect (VSD), or a hole between the lower chambers of his heart. It’s possible that it could close on it’s own, be something he’s able to live with, or need to be repaired surgically in the future. We are praying earnestly for God to close that hole without the need for surgery. The hole is a complication of Down Syndrome, or Trisomy 21. This diagnosis came as a surprise to us, as none of the tests we had done before he was born suggested it. It took a while for the chromosome test to be completed, but we were told it was a possibility within an hour of his birth.
Redmond (wise protector) Samuel (God has heard) Wyse will not be defined by this diagnosis. Named in honor of his paternal grandfather, Samuel Wenger, his name means “God has heard and blessed us with a wise protector.” We chose this name before we knew anything about him and believe God has a purpose and a mission for his life. He will be a mighty man of God, given every opportunity to succeed, and supported through every possible path he may take. We have prayed for him since before he was born, asking God to give us another child, and have believed that he would bring “life and health, joy and peace.” He is our great blessing and we praise God for answering our prayers. He has already exceeded the expectations of our doctors, and we look forward to seeing all the ways he exceeds the expectations of the rest of the world.
This month my tiny daughter started preschool. Two days a week, for three hours a day, she goes to preschool with twelve other four year olds. It’s an odd time of year to start, but this school doesn’t accept students until they have actually turned four. Since her birthday is in December, we waited until after the holidays to get her started.
We chose this particular school for several reasons:
1) We’ve heard amazing things about it from our friends. It’s located on a working farm, provides children with unique learning opportunities, and continues the Christian education we are giving our children at home.
2) The woman who runs it and is the teacher was good friends with my mother-in-law when they were in school. She was a kindergarten teacher for 30 years before “retiring” to help children prepare for kindergarten.
3) It’s five minutes from our home, which is pretty amazing considering that very little is actually close to our rural farm.
We feel really good about the decision to send her there, and she’s excited about going to school. I thought I might cry the entire time I sent her there for the first time, but the very smart teacher requires a parent to join the student for the first day of school. So I was with her the entire time. My eyes leaked a little off and on over the morning, as I saw her jumping right in with the other kids, trying to figure things out and get into the rhythm they’ve already established.
To see her unsure of herself, that always gets me. She’s such a confident child, but when I see her doubt herself, I get emotional. I know she has to figure it out, but I just hurt a little until she does. I’m not sure if other mothers feel that way or not, or why this particular thing gets me. But it sure does.
We’re told she’s tall for her age, but she was the youngest one there that day and just blended right in with the other kids. Since I was always an awkward head taller than the kids in my class, I felt such relief to see how normal she looked when in the group of kids.
My heart was touched when I saw her identify a new friend. The other little girl was kind and showed Eliana how to do a few things, so Eliana made up her mind to be friends. She saved her a seat at snack time and made a point to sit together whenever possible. There’s a little boy there who is a beast of a kid, one of those guys you know is going to be a linebacker some day. I watched as he displayed the most gentle of tendencies, including my daughter in his discoveries and treating her like she’s always been there.
She was on cloud nine as we drove away, chattering on and on about how things went and what she’s supposed to do for the next class. It was hard for her to understand that she would see the same kids at the same place in just a few days, and that her new friendships wouldn’t stop as quickly as they started.
Bad weather caused class to be cancelled the next time. We never thought a thing about it though, and bundled her up for school without checking cancellations. Rick drove her because we were concerned about the roads. She was a little concerned about going by herself that day, so I encouraged Rick to be flexible. If she seemed upset when he dropped her off, he could always go in for a few minutes to help her get comfortable. It was a little disappointing when they arrived to find no one but the teacher around!
The next day for school, the weather cooperated and I got her ready for the day. Right before we were about to leave, she looked at me with a little bit of uncertainty and asked if I was going to stay with her for a little while. I gave her a big smile and said something like, “Sweetheart, you are so smart; so fun; so brave. You aren’t going to have any problem jumping right in there this morning and doing a great job.”
I was rewarded with a huge, confident smile and a hug. Then together we walked out to the car and got her buckled in. As I was buckling her, she gave me the most adoring look and said, “Mommy, I’m so glad you’re here with me.”
My brave face melted. All I could think of was how happy I am that SHE is here with me. My daughter. My precious one. HERE. No longer a dream, a hope, a fear that I might somehow miss out on the gift of motherhood. She is a reality far better than I ever dreamed. Tears welled up and she looked at me with concern, “Are you sad, Mommy?”
“No, sweet girl. I’m not sad. I’m just so happy that I’m here with you too. You are my most precious treasure.”
On the way to school, I went over the school’s morning routine with her again. I reminded her that I’d be waiting when school was over. When she saw her teacher, she lit up like a Christmas tree and happily went inside without me.
I had a few tears as I drove away. My tiny one is growing up and learning to do things without me. She’s learning from other people who have had different experiences than me and can teach her things to help her become a well-rounded person. She’s learning about Jesus from someone other than me (and her Sunday school teachers). She’s making friends.
This year it’s two days a week. Next year, it will be three days a week. When kindergarten starts, it will be five days a week. It seems like a good progression to me. A gentle start to the letting go that parents have to do.
She’s still in Story Hour at the Library. She’s been moved up to a more advanced gymnastics class. Both of those adventures are an hour a week with a different teacher. Both of those teachers provide her with a different perspective and knowledge-base than mine.
I’ve thought about hugging her close, keeping her with me and our family only for as long as humanly possible. I’ve thought about the dangers of what those other teachers might try to imprint upon her young mind. It scares me a little to expose her to such a wide variety of other people (children and adults). I remember some of the crazy things I learned from kids I encountered in school. But I’ve decided that FEAR will not be the ruling factor in my parenting decisions.
To the best of our ability, Rick and I will pay attention to any place our children go. We’ll get to know teachers, babysitters, friends, and anyone else who might influence our children. We’ll hold our children up in prayer, constantly asking God to protect their hearts, minds, and bodies. We’ll do all we can as stewards of these precious lives to ensure their safety and innocence, and we’ll trust God’s protecting and guiding hand to reach where we cannot.
Trusting our most precious treasures to others is a huge leap of faith, but when we think of the ones we know who give their lives to educate and enhance the lives of children, we smile. There is so much potential out there. There are so many awesome people who can teach them things we will never be able to teach them ourselves. To us, this feels like a good thing.
Eliana came home from her second day of preschool with her eyes shining bright. She told me that the teachers are her newest best friends. She hugged her brother and excitedly told her Grandma about her day. I’m sure there will be days when she comes home with frustration or sadness, or a host of other emotions. We will tackle those times when they come. For now, I am so thankful she had a good day.
*Photo credit: Me. I totally coached her on this photo too. Point your feet this direction. Put your hand on your hip. Smile like this… Yup. I’m THAT mom.
Rick gets a little annoyed with me for all the professional (and candid) photos I have taken and take of our family. He’s not sure it’s really “necessary.” He and I definitely have different opinions about pictures. For many years, I felt the sting of loneliness as I saw all the beautiful photo cards of my friends and family with their families every Christmas. I cherished the cards, the sweet letters that updated me on the lives of ones I didn’t get to interact with regularly, and I looked forward to the day I would have my own to share. Rick looked at the photo cards, thought “cool”, and went on his merry way. Men!
When I look at this recent photo, I’m not sure I could be any more blessed. Less than five years ago, I was single. I had hope that life with Rick would lead to joy and arms that were full of love, but I also had a lot of fear. Had we waited too long to marry, to attempt to have a family? Would we have fertility problems? Could I be happy in a rural farming community? What would family life look like for me?
God had given me a few promises to cling to, though. I tried to pray for a job, for a ministry position that would allow me to use the degree I’d earned, but as I prayed only one prayer came to my lips. I earnestly sought God for a husband, children, and a home of my own. In those times of intense seeking, I believe He gave me specific promises from His word to hang onto. One was that I would no longer be barren, but fruitful (Isaiah 54). Another was that my latter years would be greater than the former years (Haggai 2:9). That one may sound kind of odd, but there were days when despair tried to overwhelm me and I wondered if life would ever be more than a series of disappointments, constantly overlapping one another.
As I look at this photo, some much comes into perspective. Rick is a godly, loving husband who pours out his life for me and our children. I wondered if it would be possible for us to have one child, and now we’re expecting a third healthy baby. We have a beautiful home. We are healthy. Our parents are healthy, supportive, still married to one another, and in love with our children. I’m able to stay at home with our children.
Nothing is ever perfect, so please don’t read this list and compare your struggles to my blessing list. There are things that I still wish for with all my heart, desires that may never come to be. There are disappointments to face as we work out our new normal and come to terms with the reality of raising children and living out our lives in a community. But if I’ve learned anything in my 41 years, it’s that no matter what blessings we receive, struggles come hand in hand with them. There are problems at every level of success. Some are much better problems to have, for sure! But problems, nonetheless.
In pictures, we are well-groomed, smiling, wearing outfits that took time to coordinate, and showing our best selves. I feel there is a place for that. We need to see how good it is, how good it was. We need to remember with sweetness the good times. Who takes pictures of the bad times? Who wants to remember the frustration and sadness?
While I was visiting my sister recently, we went shopping with our mom, who treated us to Starbucks. I was overjoyed. She mentioned getting us Starbucks inside Target, but I put a stop to that. Oh no. I wanted a real Starbucks. I wanted to sit in comfy chairs and drink my fancy coffee and talk to my mom and sister with no children running around our feet and demanding attention.
As we stood in line and I absorbed the delicious smells, the comforting feeling the place gives me, I had to laugh. The closest “real” Starbucks to me on the farm is about 40 minutes away, so it’s a special treat to go to one when I get the chance. But what wonderful memories does it bring back to me? Memories of sitting with dear friends, typically single, drinking delicious concoctions that didn’t involve alcohol, and dreaming aloud together about the day when we’d be married and have children. We’d try to solve the problem of the latest guy we were dating, or wanted to date, or wanted to leave us alone. We’d laugh at our own drama. We’d remember past relationships, or dream up new ones. And here I stood in line, tried to soak it all in, and realized that I had what I had so longed for in those days.
I can still spend hours in a coffee shop with a friend, discussing life’s current challenges, dreaming about the future, and making new memories – no problem at all! For me, there’s a comfort in a warm, homey space that welcomes you to sit and relax with no agenda other than connecting with others. But oh how the topic of conversation has changed…
I knew this was the life I wanted, and I was not wrong. I didn’t slap a promise from the Bible on my problems, demanding that God change my reality to better fit my plans. I earnestly sought God with my whole heart, responded to His invitation to have a relationship with Him, and allowed the Word to speak to my heart. My relationship with God is the best investment I’ve ever made. As a result of trusting that God knew what was best for me more than I ever could, I am blessed beyond measure. And I want pictures to commemorate this time in our lives! I don’t want to forget what this time was like, daughter roaring, son watching her to decide what he wants to do next, me watching it all in awe of my wonderful Savior. Thank You, Lord.
Photo Credit: ErikaMarie Photography
When I was a senior in high school, I got caught with beer in my car at after prom. Seriously. Me. Beer. Did I drink beer? Nope. I still don’t. Nasty stuff. How anyone can stand it, I don’t know. But nevertheless, it was my car, my friends, and beer. I knew about it, allowed it, and got caught. The principal had to call my parents in the middle of the night. I was pretty sure death would result from my sin. Either that or every single privilege I enjoyed, including the car and the beach trip I was planning with those friends after graduation, would be taken away from me.
Shaking in fear, I walked into my dark house that night, wondering what punishment was waiting for me. I expected all the lights to be on, my parents furiously pacing the floor.
Instead, they were quietly laying in bed, just like always. As I tiptoed in their room, wondering what type of new torture this was, I saw my dad’s arm go out and beckon me toward him. Slowly, I walked toward that arm. He pulled me in closer. Then he pulled me down onto the bed. Instead of yelling (or killing me), he just hugged me tight. As my fear melted away, I began to cry. Somehow I managed to blubbler out the story: I’d agreed to let my friends bring beer because I wanted them to have fun. They’d said they were unable to let loose, dance, and have fun without it. It had never occurred to me that I could get in trouble for it. I wasn’t drinking and driving. I wasn’t drinking at all.
My mind often goes back to that night. My parents taught me a valuable lesson in the middle of what must have been very frightening to them. They said that a person shouldn’t be dependent on alcohol to have fun. If a person can’t have fun without alcohol, they have a problem. I’ve always remembered that lesson. A nice glass of wine with a fine meal is a different thing than the inability to enjoy oneself without it.
Beyond the alcohol though, another issue strikes me. I learned a lot about a father’s love. He could have raged at me, punished me extensively, or demanded that I stop hanging out with those friends. He didn’t though. He trusted that I’d learned my lesson (I certainly had) and let it go. He treated me tenderly, and he treated my friends tenderly too.
There’s a worship song that’s very popular right now, “You’re a Good, Good Father.” The first verse says,
I’ve heard a thousand stories
Of what they think You’re like
But I’ve heard the tender whisper of love
In the dead of night
And You tell me that You’re pleased
And that I’m never alone.
You’re a good, good Father.
Like my dad, my husband is a good, good father. He is the one who scrambles out of bed in the middle of the night at the slightest cry of a child. He answers their cries tenderly, holding them, rocking them back to sleep, and sometimes really irritating me. Why does he have to be such a softy? Can’t he command them to go back to sleep? But he doesn’t.
Not everyone has such a good father. Many fathers are callous, hard, and ready to pounce on their children at the least provocation. They yell and issue commands, not taking the time to listen and understand. And some fathers simply abandon their children altogether, or are so evil that the child would be better off if they did. Into the mess of this world, we have this beautiful song about our Heavenly Father. HE is a good Father, no matter what our earthly fathers are like.
So why is it that so many of us, myself included, run from this good Father when we sin? Why is it that we avoid God when we are ashamed of ourselves? We have a good Father who loves us fully.
He beckons us with open arms, welcoming us into His embrace, even when we have sinned woefully. He wants to hug us, talk to us about what happened, and help us learn something from it. He wants to deepen our relationship, not push us away.
I see it at times in my own life. When I feel deeply disappointed by the way things have turned out, so different than what I thought God had in mind, I struggle to embrace Him. I feel a little like an angry teenager, arms crossed, back turned to God. I haven’t left Him by any means. I’m still leaning against His throne, and I don’t want to leave. But I am so hurt and disappointed, I don’t think I can crawl into His lap right now either. Constant questions plague my mind. Did I do the wrong thing? Is this somehow my sin? Am I missing something? And I’m facing outward, away from Him, because I’m watching so expectantly to see what He will do next.
I have a good, good Father. Surely He has sent an answer, an unforeseen blessing, and it’s making its way up the road to me now. But I’m very near-sighted, and I can’t make it out yet. But I’m watching.
How much better could I watch from the perch of His lap? If, like my tiny daughter does so freely with her daddy, I could crawl up there, grab hold of his shirt and snuggle down, knowing without question the comfort and security I would find there, wouldn’t life be so much better?
What if we started running toward God when we sin? What if we cry into His arms, pour out our sorrow, share our frustration and disappointment openly? Our good Father can handle our pain, and He knows exactly what to do with it.
A good, good Father is exactly who we have. No matter who our earthly fathers were, or are, we can rest in the embrace of God.