There’s a famous poem about Down syndrome called “Welcome to Holland.” On our first day in the NICU, I received a large, white binder full of information on Down syndrome and local resources. The poem was the only thing I could bring myself to read. I found it comforting in the middle of the chaos. As we’re nearing Redmond’s first birthday, I see the truth in the concept. So here is my (longer) description of the move our family has experienced in the last 11 months… To read more, click here.Read More
It’s been a hard year and a half with my pregnancy and Redmond’s health challenges.
When I was single, I marked hard times by watching Netflix in bed, isolation, binge eating, and fantasizing about the things I didn’t have. In psychiatric terms, I’ve learned that I disassociated for a time. I didn’t know how to handle the stress of what was happening, so I shut down. I went through Christian counseling in my twenties and am incredibly grateful to the wise woman God placed in my life to help me process some hard things and move past them.
Several years before Rick and I married, I taught myself how to deal with anxiety in a natural way. I learned to relax and not let things get to me like they had. But when I married him, I warned him that depression had been a bit of a dark cloud over me in the past. I had mostly dealt with it, but am always concerned about it coming back. When I got pregnant with Eliana and experienced such extreme sickness, it did come back. I was miserably ill, newly married, in a place I hadn’t lived since I was 12, in a new church, and without an established support system.
For about 7 ½ months, I spent the majority of my time on the couch, and it got to me. I didn’t call my friends often. I didn’t read my Bible. I was so sick that I didn’t go much of anywhere. When I had to grocery shop, I cried as I struggled to make it down the aisles – a mix of nausea and sciatica and exhaustion making me feel like the floor was pulling me in. I didn’t do much of anything, except feel very, very sorry for myself. I was upset with God for not waving His magic wand over me for my years of (somewhat) faithful service and letting me sail though pregnancy for the first time at 37 years old. Embarrassed, I was concerned that others thought I was being dramatic and attention-seeking. At one point it got so bad that I actually had a fleeting thought of ending the pregnancy.
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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.Read More
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 PhotographyRead More