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.
We interrupt our regularly scheduled program to bring you a New Year’s update…
New Year’s Eve, 2017
We rolled into our own driveway at 1:47am on New Year’s Eve. We weren’t out partying. We were traveling home from a nice visit with my family in South Carolina. It was FREEZING COLD – so cold that after scraping a bit of snow off the van, I couldn’t warm up for hours. My face hurt and by the time we got home, my feet were stinging from the cold and the car thermometer registered -1 degree Fahrenheit. I don’t want to know what the wind chill was.
Our five-year old, Eliana, had only fallen asleep in the last few minutes. She was so excited about flying in the plane, getting her own cup of apple juice and a cookie, and waiting for the fasten-seat-belt-sign to turn off, that she bounced all over her daddy for most of the flight. Exhausted when we got off the plane, she insisted on “playing” on the little play set outside the gate for a minute. At that hour, her version of playing meant that she sat on the teeter totter and rubbed her eyes. Ha! I figured she would sleep in the next morning because her little eyes were brightly shining at me at 2am when I covered her up in bed, but oh no. That child was up at 7am, ready to go.
Our three-year old, Charlie, quietly walked through the airport at my side, obediently holding onto the stroller. He ate his snack, studied the information about the airplane we were on, and then curled up in a little ball and fell fast asleep on my lap. His only tears came when we woke him up to walk out of the plane and he realized he hadn’t had his apple juice. We remedied the situation by purchasing the highway-robbery priced apple juice in the vending machine outside the gate and letting him drink it pure, straight from the bottle. He then quietly got in his car seat, fell asleep, and barely opened his eyes when we transferred him to his bed.
Redmond, sweet baby Redmond, traveled like a champ, fussing only during takeoff and landing when his ears hurt, and for a moment when we stopped the car on the way home for a potty break. Because the plane wasn’t full, we were able to bring his car seat on the plane and give him his own seat. But the plane was only four seats across, so that meant one of the kids had to sit alone. They weren’t having it either. So during takeoff, they sat together in front of me and Redmond, across the aisle from Rick.
As soon as we got in the air, I hooked Redmond up to his feeding tube, laid him fast asleep in his car seat, and unbuckled my seat belt (shhhh….) to sit in the next row beside Charlie. Eliana bounced over to sit by her daddy. I had to laugh a little at myself, leaving Redmond “alone” in the seat behind me. I’m totally the mother of a third child. I would NEVER have done that with Eliana. Of course, I probably couldn’t have done that with Eliana. Redmond didn’t mind a bit. When we started descending and my ears popped, Redmond fussed a bit. I laid Charlie’s sleeping head in my seat without a peep from him, moved back to sit by Redmond, and held him during landing. He quickly fell back to sleep once his ears felt better, and we carried on.
Redmond, the super-baby, slept in until 9:45am. Ahhh… The older two sat on the couch on top of their sleeping daddy, and I slept in. Once we were all awake, it was a flurry of unpacking, playing with new toys, feeding the baby and ourselves, and putting them all back down again for early naps.
I have a few moments of quiet now to think about the year that is ending.
2017: a year etched into the walls of my heart and mind. I have never experienced so many wild emotions and events in one year.
The first time I was able to hold Redmond. All those tubes and contraptions terrified me, but at least he was in my arms.
It was a year of sickness – the end of my pregnancy, the c-section, and horrible staph infection; Redmond’s 46 days in the hospital and multiple bouts with Rhino-Entero Virus; Rick’s head injury and some scary days where we were uncertain if his brain was okay, and lastly multiple colds/coughs/infections in the older kids.
It was a year of some miraculous healing and some slow and steady plodding away at health. I healed nicely from the c-section, slowly from the staph infection, and gleefully danced through the holidays eating without a thought for gestational diabetes or hyperemesis gravidarium. (I also had to buy some new clothes to accommodate all the glee. :-/ Hopefully I’ll be able to give them away pretty quickly.) Rick’s brain is actually just fine (whew) and his wound is nearly healed after 14 staples.
Redmond has miraculously recovered from pulmonary hypertension, multiple holes in his heart (no surgery needed), and a host of other health concerns. He no longer needs supplemental oxygen, and I’m starting to wean him off the feeding tube. Tears of gratitude stream down my face as I type those words, remembering that just this morning he took 75 cc’s (2.5 ounces) of milk, oatmeal, and fruit at one meal, then chowed down on Puffs an hour later! Feeding issues have been a major challenge, one we have plodded through, but he is making wonderful progress. In spite of ECMO and a huge list of medical interventions required to save his life, he is thriving and happy.
In September, with his feeding tube and oxygen tube (which never stayed in his nose.)
Fear and repeated, intentional, difficult actions to look past our circumstances and choose to trust in God marked the first half of 2017. I made a choice to sing praise to God when my heart was breaking apart. (One of my favorites is It Is Well – Kristne DeMarco & Bethel Music.) I cried out to my friends and family for help, begging them to pray when I could not. I clung to my husband for support and strength. And I sobbed as I saw my beautiful older children struggling through my sickness and separation from them, cared for by others in the best possible way I can imagine, reaching out for a mother who couldn’t attend to them. The first half of 2017 was crushing, humbling, and excruciating. Any illusions I had that my life was under my control were ground into dust and blown away. I could control NOTHING, so I clung to the Lord with a fierceness that probably only comes during times like these.
Surprises of joy and bursts of love marked the second half of 2017. God fulfilled His promises to me. Where sickness and fear had tried to break in and steal, God caused health and peace to rush in and soothe. The praises I sang were no longer a sacrifice, but expressed pure and true gratitude and love. The shock and loneliness I had felt left as I recognized the strength of the arms that had reached out to protect, cocoon, and lift me and our entire family up out of the quicksand that tried to suck us in. We received more than we ever could have imagined – emotional support, financial support, prayer support, helping hands, and so much more.
Eliana helping me return to healthy cooking in November. I closely supervised this knife business.
Our older children made it through the stunned separation from us with grace, thanks to my husband’s parents who stopped everything to become surrogate parents. Our part-time babysitter literally moved into our home to help them, planned meals, bought groceries, managed schedules, and kept everything going. I’m pretty sure they didn’t miss one day of school, library, gymnastics, or Sunday school. I don’t even know everything they did, what they sacrificed in terms of time with their own friends and family, to keep mine from falling apart.
Through the crushing, humbling, excruciating first half of the year, I learned that I had a web of support and love surrounding me that I could never have imagined. I learned how to ask for help and be a grateful receiver. Our church stepped in to provide spiritual and emotional support, prayers, meals, and even came over to clean up our landscaping, finish a painting project, and wash windows! My mom’s group has brought over more freezer meals than I can count, prayed for us, visited us in the hospital with gifts, coffee, and hugs. The women in my Bible study have listened to the deepest places in my heart and offered prayer, support, and love. They’ve connected me with resources I desperately needed. Our neighbors kept things running on the farm, doing acts of service we may never fully comprehend. My in-laws’ church provided meals for them while they were the primary caregivers for our children. My parents fasted and prayed, visited often, listened for hours as I shared my concerns, and made numerous sacrifices to support us.
My sister dropped everything, got on a plane with about two hours notice, and flew to my side during the worst of the crisis. She was my brain while I muddled through pain medication and shock, asking intelligent questions, filtering the information for me to understand, and doing the first research into Down syndrome for me. Rick’s sister and brother-in-law got us out of the NICU for a delicious meal, helped give his parents a break in childcare, and kept communication flowing with his family. I could write pages upon pages of all the support and blessings we received. I’ll end with one last thing – the shock of unexpected, often anonymous, quiet and thoughtful financial gifts from the community at large. We were so stunned by them, thinking they were unnecessary, and finding out later that others knew far more than we did about these things. (Even with good health insurance and state and national programs to assist, the cost of caring for a medically fragile child is astounding.)
I learned that the very thing that I thought would cause my life to become lonely and socially awkward has become the exact opposite. I have made many beautiful friends through this time of shock and adjustment. I have discovered a whole new world in the Down syndrome and special needs community – a place where parents just open their hearts and give one another grace and support.
At first Rick and I thought we’d skip the support groups and just live our lives with Redmond as usual. But then I received the phone number for a local woman who started a group for families of young children with Ds. I tentatively contacted her and have since met around 15 other families in our situation. They introduced me to a larger group called the Down Syndrome Diagnosis Network, also aimed at families with young children. I signed up for an online group for mothers of children born in the first half of 2017. Within that group is another I joined for mothers of children with feeding tubes. Through these groups, I’ve been given tools to help Redmond have the best life possible. Our little group has over 270 members from all over the US and several other countries, and I look forward to someday meeting every single one of them in person.
In 2017, I spent more hours than I’d like to think about sitting in our recliner in the living room, feeding my baby. During that time, I was able to bond with him in the way I wasn’t at first able to do. We had no skin-to-skin time. I didn’t get to admire his beautiful face and nurse him in the hours after he was born. But after he came home from the NICU, I did spend hour upon hour feeding him, looking into his dark eyes, admiring his soft cheeks, kissing his little toes, and whispering prayers over him. He made his own skin-to-skin time, nuzzling his face deep into my neck, staying there for hours at a time. What a thrill it is now to hear him calling, “Mom, mom, mom…” How my heart nearly bursts when he holds his hands up to me and says, “Mama!”
As low as my heart fell this year, it has risen to the heights too. Redmond is so loving and sweet. The way Eliana and Charlie adore him is an answer to prayer. Instead of expressing anger for how long we were away from them, they have expressed only joy that we’re all home together. I think that when a person faces such intense fear of loss, heightened emotions result when things start to look up.
2017 for me was a wild rollercoaster. At the end of this year, I find myself enjoying the calm and breathing it in. I’m looking forward to 2018, hopeful that it will be a less eventful year. I’m praying for a chance to focus again on being awesome, rather than just surviving. I’m looking forward to the day Eliana starts kindergarten, the day Charlie starts preschool, the day Redmond sits up for the first time, takes his first steps, and meets other milestones. I’m looking forward to turning my attention back on our marriage, maybe even spending a few nights away. I’m full of hope and much too aware that problems will come. I’m also confident that God will provide a way through any trial that may come, just as He’s been doing all this time.
This morning, Redmond is playing on his play mat, alternating between the toys, the soft arches that stick up from the mat and dangle toys above him, and his toes. He gabbers to himself, giggling, stopping to look at his beautiful hands for a moment. He is happy, active, verbal, and content. As of November 13, there are NO tubes on his face. He no longer attracts attention from strangers simply because they wonder what the bright yellow tube taped to his face is. When his face was finally free from tubes, he was 8 ½ months old.
The surgeon who placed his g-tube (a feeding tube that goes directly into his stomach) gave us instructions for feeding him that have shocked our daily routine into a new version of normal.
In September and October, we desperately tried to get Redmond to eat enough baby food and milk by mouth that he wouldn’t need a feeding tube at all. We hoped and prayed that we’d be able to wean him off the ng-tube (a long, bright yellow tube that we threaded up his nose, down his throat, and into his stomach), and we did everything we knew to do within the parameters of his health concerns, to no avail.
Our Daily Routine
Beginning in September, we started by waking him up at 9am (he’s a super-sleeper), and then feeding him breakfast. He hadn’t had anything to eat in over 8 hours, but he never acted hungry or interested in breakfast. Still, we began with “oral stimulation” to wake up his muscles (this is what we’ve been working on in speech and feeding therapy). We took various toy-like instruments and rubbed them inside his cheeks, on his tongue, etc. Then for 30 minutes we offered him baby oatmeal mixed with high-calorie milk, puréed fruits and vegetables, and a sippy cup with more milk. He typically drank between 5-20 cc’s of milk, and whatever was left of the 100 cc’s we wanted him to drink we gave him via his feeding tube.
We had a bag with a long tube which we attached to his feeding tube and we slowly dripped the milk into his stomach. That process took another 30 minutes. Because the ng-tube propped open the sphincter (a flap between the stomach and esophagus that stays shut when we’re not eating to keep the food in the stomach), he often spit up after he ate. It could be anything from a tablespoon to projectile vomiting his entire feeding. There was no pattern we could establish. We tried reflux medicine but it made it worse! We did the best we could, holding him upright for another 20-30 minutes after the feeding, distracting him if he coughed or gagged on the tube, hoping he could keep it down. So feeding him breakfast took 90 minutes.
We had to supervise him closely when we fed him via the ng-tube because he was very bothered by it and the tape to keep it in place. (First I put down a thin layer of “skin prep” ointment, then stuck a gel-pad across his cheek, then I laid the ng-tube across it and covered it with a thin piece of clear medical tape called Tegederm, and finally I put a piece of tough, white medical tape as close to his nostril as possible to prevent any gaps that he could pull on.) He made it his job to get that white tape loose, so I ended up changing it several times a day. In spite of all the tape and supervision we provided, he often managed to get it loose and pull out the tube.
If he pulled it all the way out during a feeding, all we had to deal with was a mess. But if he pulled it part-way out, it was possible for the milk to go into his lungs. Fluid like that in his lungs could make it impossible to breathe, a crisis situation, especially for someone with the early lung problems that he experienced. Less critical, but very difficult, was putting the tube back in his nose after he pulled it out. He screamed like we were skinning him alive, often forcing the tube to come out of his mouth instead of go down his throat, so we’d have to start all over again. One day he pulled it out three times!
If the tube was inserted at a hospital, he was given a chest x-ray to be sure it was in the right place. At home, we measured Redmond, then looked at the numbers printed on the side of tube to insert it far enough to be in his stomach (not his esophagus or intestine). Then we used a stethoscope to listen for a “whoosh” as we forced air into his stomach via the feeding tube. I was often concerned that the tube wasn’t placed correctly, so we watched him like a hawk. Rarely ever did we put him down and walk away during a tube feed.
After 90 minutes of feeding, he often projectile-vomited the entire meal. It was very discouraging. It also meant we went through a lot of wardrobe changes and laundry.
For lunch, we repeated the whole process from breakfast – another 90 minutes. We waited 3 hours from the start of one meal to the start of the next, so we had about 90 minutes in between feedings.
Three hours after lunch, we attempted to give him 160 cc’s of milk via a bottle or sippy cup. We tried all kinds of cups and bottles/nipples. Rarely ever did he take more than 30 cc’s (1 ounce) orally, but we gave him up to 30 minutes to try. We tube-fed the rest. It took about 45 minutes to do that tube feed, then 20-30 minutes of holding him upright to help prevent reflux.
At supper time, we repeated the breakfast and lunch process. This meal was typically his favorite and the one he responded to the best. It was a lift to my spirits when he gladly opened his mouth and ate the food, drank from his cup, and was happy about it.
At around 9pm and again at midnight, we repeated the mid-afternoon meal. Three meals a day of baby food plus 100 cc’s of milk, and three meals a day of 160 cc’s of milk only. He typically fell asleep during the 9pm feeding and slept straight through the midnight feeding until I woke him up the next morning.
That’s approximately 9 hours a day of feeding.
Some days I just couldn’t handle it and I didn’t do all three baby-food meals. I just tubed 160 cc’s instead, not offering any of it orally. When possible, I turned the job over to our babysitter. She’s amazing, sweet, and competent. (She is a GIFT in more ways than one.) My gracious mother-in-law also overcame her fear and learned how to feed him so she could babysit. I don’t want to imagine life without them.
When you feed a six-month old baby food, you have to teach them to eat. They don’t know what to do with thick or textured foods. They often spit it back out or need a lot of encouragement to swallow. So while I fed him, I alternately massaged his feet and neck to induce his swallow reflex, I sang songs and made crazy faces to get him to open his mouth, and I taught him sign language (all done, more, and good job!). The amount of energy it took to do that over and over was difficult at times.
How It Affected Me
The “side effects” of spending 9 hours a day feeding the baby became a problem. First of all, that makes for an extremely sedentary lifestyle. I’m not a super-energetic person, but there are times when I’ve felt like I’m going to lose my mind if I can’t get out of the house for a few hours and just walk around a store. Forget strenuous exercise or healthy food preparation. There’s not much time for things like showers, laundry, grocery shopping, and attending to the 3 and 4 year olds we already had – much less chopping vegetables, preparing meals, or going to the gym. And when the 3 and 4 year olds know that you are stuck in a chair, literally attached by a tube, there’s little incentive for them to obey. What are you going to do?
As I’ve watched in despair as my waist line expands, my precocious children have repeatedly asked me if I have another baby in my belly. According to them, I sure look like I do. It takes a lot of self-control to handle those comments when you already want to scream every time you look in the mirror or try to find clothes in your closet that fit…
When I said I rarely put Redmond down during a tube feed, I meant it. I actually never put him down during a tube feed until a couple months ago. I was the only adult at home and Charlie was out of control. No amount of verbal encouragement, commands, or warnings would rein him in. And he knew I was powerless to stop him. That was the day I decided I wasn’t powerless. I could risk putting Redmond down for a few minutes to deal with my other two children, who deserve my time and attention too. The look of shock on Charlie’s face when I put the baby down, got out of the recliner, and dealt with his deliberate disobedience and taunting was a wakeup call. Thank God that Redmond was okay for those few moments and I realized that I was going to have to take some risks if I didn’t want my older children to become unruly beasts.
Once we were able to accept that Redmond was not going to wean off the ng-tube like we’d hoped, we decided it was time to do the g-tube surgery. We weren’t excited about it, but we were done with the struggle. People kept telling us that our life would change for the better once we got rid of the ng-tube, and we were hopeful, but we couldn’t really understand how.
After the g-tube surgery, about 6 different people came to Redmond’s hospital room to ask me how I’d been feeding him. They could not understand. I didn’t think it was that complicated, but finally someone wrote it down and figured it out. A nutritionist visited us and we worked out a plan for his daily calories. Then the surgeon sent word through the nutritionist that we were to change our feeding plan.
The New Plan
From 9am-9pm, give Redmond ONLY the food and milk he will take by mouth. Nothing in his tube. Keep track of how many calories he takes by mouth and subtract it from the total amount he needs a day. At a very slow rate, tube the rest of the milk from 9pm-9am, while he sleeps.
No more daytime tube feeds?
Because Redmond’s feeding tube now goes directly into his stomach and he no longer faces the risk of aspiration or reflux, he can receive tube feeds without constant supervision. He can receive tube feeds lying down. We don’t have to hold him upright after each meal.
My schedule changed dramatically. He now receives 4 small meals a day of food and milk in a cup. And I can feed him 3 meals at the table during family meal times. The tube feeding happens while he (and I) sleep.
I’ll admit that in the first few nights we were home from the hospital, I didn’t sleep well. I got up every few hours to check on him. Has he thrown up? Is he tangled in the feeding tube? Has the feeding tube come loose, spilling milk onto the bed?
The morning I wrote the first draft of this blog entry was the first time I’d been able to write anything in quite a while. Eliana was at preschool and our babysitter took the boys out for an adventure. The house was quiet and I ignored the other thoughts that competed with writing time – it’s a great time to go exercise, cook a healthy meal, take a long bath or even an unrushed shower, finish the farm bookkeeping, etc. My soul is fed from writing, so I reminded myself that I should have time to do those other things later. I’m finally no longer tied to a feeding tube.
Since the feeding tube was taken off his face, Redmond’s development has shot ahead. He was giving so much energy to the effort to get it out that he didn’t do other things. Feeding him is now a 10-15 minute time where he joyfully opens his mouth, swallows the food, and asks for more. He happily drinks milk from a straw. We are amazed. Our therapists are now talking about weaning him off the tube entirely, which is shocking to us. We’re just getting used to this new normal.
While we can’t predict the future, our feeding therapists encouraged us that it is perfectly reasonable to expect that Redmond will only need his feeding tube for 4-6 more months. Once he turns a year old, he no longer needs primary nutrition to come from milk. As long as he can eat enough calories to sustain him, we will no longer need the tube. We are hopeful and excited for that day to come.
In my next blog posting, I’m planning to write about what this entire experience has been like for me emotionally.
I’ve spent a lot of time in Facebook groups for moms of kids with Down syndrome this year. It’s been helpful to me to see other children with Ds, to hear what their moms are going through, and to learn all I can about the ways 47 chromosomes can affect my child.
Recently a mother posted that she had confessed to a friend that she sometimes still grieves that her daughter has Down syndrome. The person she spoke to answered her harshly, saying she should just be grateful that she has a baby at all.
The mother asked us if we ever felt like she does, wondering if she should be ashamed of herself and her feelings.
A lot of people in the Down syndrome community really celebrate the diagnosis and claim that they wouldn’t want their child to be any other way. I look forward to the day I feel that way too. But when I found out, I felt like my entire world was crumbling and God had withdrawn his presence from me. My mouth went dry, a wash of darkness went over my eyes so that I couldn’t see for a moment, and my body trembled uncontrollably. We’d been warned the night before, right after he was born, but I hadn’t thought it could be true until that moment. I was in my hospital bed recovering from an unplanned c-section, Rick was an hour away at the nearest NICU with Redmond, and my midwife and the OB who did the c-section were with me. The news came on the phone from the NICU nurse who had just finished explaining all Redmond’s medical concerns to me. I asked her the question, sure she would say no. She didn’t.
Two weeks later we received the results of his genetic test, confirming the suspicion. Young and bright medical professionals encouraged us, smiling as they told us how much we had to look forward to with our son. They explained that it’s a great time to have a child with Down syndrome because there’s been so much research and advancement in the last 20 years. If Redmond had been born 30 years ago, he would not have lived. I am incredibly grateful for the gifts God has given those with scientific minds who seek out answers and find incredible ways of providing healing and hope.
In spite of the bright outlook of the doctors, it took a few months for me to accept that the diagnosis wasn’t wrong. Redmond’s face was so covered in tubes that it was hard to see his distinct features. I obsessed over what “Down syndrome-type features” Redmond did and did not have. He has a strong palmar crease in his hands, but not much of a nuchal fold. He has some pretty crazy toes, but not the typical sandal toes. His fingers aren’t square, his ears aren’t low set, but he has a flatter nasal bridge. Surely the diagnosis was incorrect. He looks a lot like Eliana did as a baby. I considered asking the doctor to run another karyotype, unconvinced that the first one was correct.
I was terrified about what Down syndrome meant for Eliana and Charlie. Had I ruined their lives? Would I be able to parent them like I wanted to while I was caring for a disabled child? I was so embarrassed too. Terrible shame caused my face to flush hot when I thought about sharing the news.
What I was so embarrassed about, I cannot recall. Since that time, I have come to see that life with Redmond will greatly enrich our family, giving Eliana and Charlie a sense of compassion that many people lack. They will be able to see people who are different as individuals, worthy of friendship and love. We care for Redmond as a team. Rick and I are the parents, of course, but I work to actively involve them in everything I can. Eliana is a wonderful physical therapist. Charlie is a terrific diaper fetcher and bath time assistant. They adore their brother and have been told that he has Down syndrome. How much they understand of that at their age is questionable, but it will come with time.
My feeling that God had withdrawn his presence from me was just that – my feeling. God’s presence never left. He’s changed my heart to understand Down syndrome as a gift, to know that we are the best parents for him and we can trust our instincts, and that every moment we have with Redmond is a blessing. Writing those words still causes tears to rise and an ache in my throat. I do not claim to understand this gift. But I believe with all my heart that it is true and will become clearer every day. God has shown Himself faithful and mighty as He has taken this medically fragile baby and healed his body. One thing yet remains – feeding – and I have no doubt that He will soon eat and drink enough on his own to sustain himself.
Why in the world would I put such thoughts into words and publish them for the world to see? I have no shame in what I felt and thought, and if it can help one other parent in our situation feel better, it is worth it. It is understandable. We had no frame of reference for Down syndrome. It was a thing that was going to make our life hard, to make our family weird, and we really dislike weird. Oh, how we’ve treasured “easy,” “normal,” and “typical.” But if you know anything about us at all, you know how laughable that sentence is. Rick and I are far from normal or typical, having married for the first time at ages 47 (Rick) and 36 (me). It was not easy to be single for that long. Rick lived with his parents until we got married. We had our first child at ages 48 and 37 and our last at ages 52 and 41. As a single woman, I became an ordained pastor. We are weird! And we LOVE the weird people in our lives. Why we thought normal was so good is absurd.
Hard is another thing. I’d be lying if I said we’d come to embrace hard things. Rather, we’ve come to realize that we can do hard things. Hard things will not break us. Hard things will not break our marriage, will not break our faith in God, and will not break our spirits. Hard things are a part of life and God uses them to grow us into who He is calling us to be. Does God cause hard things? I believe we live in a fallen and broken world and hard things happen as a result of that. My theology isn’t perfectly worked out here, but I’ve learned that formulas do not exist. God doesn’t work that way: if you do A, then God will do B. God’s promises are true, but His timing is not our timing. We still do what we can to please God, to obey His word, but we no longer expect that our lives will somehow be free from difficulty or pain. The rain falls on the just and the unjust alike (Matthew 5:45). Job was a godly man, and yet he suffered terribly. We’ve learned a new level of difficulty and aren’t looking to find any deeper levels.
While I accept Down syndrome today and acknowledge that God has given us a gift, I would be lying if I said I still feel no grief over it. I regularly tell myself to stop borrowing trouble as I try to figure out a future for my son. His future is in God’s hands and I believe God has a purpose for him. I feel sad when I think about sending him to school where he will learn that he is different. There is a tinge of wistfulness when I see typical babies his age who are ahead of him developmentally. But when I tell Comparison and Fear that they are thieves and liars, grief leaves and joy takes over. I immerse myself in what Redmond is doing today. He’s so cute and cuddly. He’s doing amazing things, learning how to eat and drink on his own, getting stronger every day. He’s very vocal and alert. He adores his siblings and is happier when they’re around. He is a treasure. He isn’t colicky or unhappy, he sleeps great, and he smiles with his whole body.
Although I’m writing about it now, during our daily lives I rarely think about Down syndrome. He’s just my precious boy and we adore one another. I’ve had to focus on it more just because I had such a steep learning curve and I hate to be ignorant. I had to know what I was getting into and how to give him the best life possible. And for that precious mom whose “friend” chastised because she was not happy just to have a baby, I send all my love. Although a woman longing for a baby may not realize it, there are worse things than not having a baby at all. I have waited in the lobby of children’s hospitals and seen the families that go through there. I’ve seen the heartbreak of children who are severely deformed, unable to communicate at all, unable to do anything for themselves. What is Down syndrome in relation to the things I have seen? It’s NOTHING. It’s definitely a gift. But even with the gift, we are allowed to mourn the idea of what will never be.
Special needs parents – we swallow down our pride and grief, we stop concerning ourselves with petty things (will our child will be the best dressed or most athletic?). We push ourselves beyond our limits, going from doctors to specialists to therapists, learning about medical conditions and procedures we never wanted to understand. We try to find time to grocery shop, pick up the toys, and take a shower in between changing bandages or reinserting feeding tubes. We cry a little in private, and then we suck it up and give our children our best smile as we try one more time to get the baby to eat or sit up. We make the most of what we’ve been given, squeeze every ounce of good we can out of it, and try not to think too much about the unknown future. But we certainly grieve and there is nothing about that to apologize for.
***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.