“If I stand tall, I’m standing on the shoulders of those who have gone before us.”
I write this post with tears streaming down my cheeks…a grieving of injustices and tragically misguided understanding of the value of life for those with Down syndrome. And as I reflect on the future I expect to give my daughter, I also weep from the overflow of gratefulness for those whose shoulders I stand on. I pray that my participation in history will create a better world for future generations of children living with Down syndrome.
History is fraught with evil. Yet, in its time, evil is often disguised as ‘an educated view’ or the ‘moral choice’. Only later, after much suffering, is evil exposed and those who choose NOT TO DO NOTHING rewrite the story for future generations. The history of Down syndrome is not void of such tragic deceptions. However, its history is neither void of ordinary people, who took the pen out of evil’s grip and began to write a better story.
Elimination preceded discrimination. In early Spartan days, infants deemed to have a disability were barbarically thrown off cliffs in an effort to improve their race by the elimination of less-desireable genetics. A similar Eugenics movement was birthed in America during the early 1900’s and children with Down syndrome were being killed or sexually and physically abused through compulsory, federally funded sterilization. These atrocities in America, gave inspiration to Hitler’s ‘life unworthy of life’ indoctrination and early genocide of 200,000 people with disabilities using lethal injections, starvation or gas chambers. Most of the victims had Down syndrome. Little girls, no different than my daughter, would be deemed unworthy of life, murdered shortly after birth or grossly abused, merely for being differently-abled.
Although the Eugenics movement lost momentum, the prevalence of asylums and the institutionalization of the mentally disabled was the acceptable norm. Children with Down syndrome were immediately removed from new mothers and in some cases, Father and Doctors would deceive the mothers by telling her the child had died, when in fact, the child had been abandoned to an asylum. Even the most prestigious of institutions were draconian at best. Once, Senator Robert Kennedy visited a particularly sought after institution, Willowbrook, and referred to it as a ‘snake pit’. Medical experimentation, unsanitary conditions, isolation, prison-like restraints, gross abuse and unmarked graves characterized these facilities. In the mid 60’s the norms of institutionalizing the mentally ‘retarded’ began to shift; sadly, it would take until the mid-1980’s for this horrific chapter to close.
During the early 60’s, a number of families refused to have their children abandoned to ‘snake pits’. These families chose to raise their little ones with Down syndrome themselves in the hope they could offer their child a better future than an asylum offered. Families who chose this path were explicitly denied the support of government, medical or educational resources to assist with the care of their child. In a time when accurate information about Down syndrome was scarce, resources were non-existent and discrimination was still high, these families refused to believe their children were unfit to be raised at home. Instead, many families began support groups in the basements of churches, community facilities and homes. Out of this emboldened group of people, The ARC was born-a grassroots movement to change perceptions of children with Down syndrome.
And then, in 1960, a woman named Kay McGee gave birth to a daughter with Down syndrome, Tricia. Instead of allowing her daughter to be taken, her and her husband Marty took their daughter home against the advice of doctors and embarked into a world with little to no support. Kay began to network with others who had also deferred institutional care for their children and on the shoulders of these brave families, she pioneered the National Association for Down Syndrome. Kay rallied people together for the cause and connected professionals with parents to close the information gap surrounding Ds and she coordinated therapeutic interventions for children with Ds. Kay would visit hospitals to plead with the staff to notify her when children were born with the syndrome so that she could reach out to the family and provide the support she had never had herself. Today, NADS is still transforming the story.
Up until 1984, medical practitioners could refuse life-saving surgeries for children with Down syndrome; instead, many doctors would mandate starvation as a method to do away with these little ones plagued by health complications! This story is shared on the NADS website:
In 1982, a Bloomington, Indiana baby with Down syndrome, known as Baby Doe, was born with esophageal atresia. Because the baby had Down syndrome, the parents were encouraged by their doctor not to give permission to operate. When word of the situation became public, a dozen families came forward and offered to adopt the baby. The offers were refused. The parents, their doctors, and the Supreme Court of Indiana said they had the right to starve the child to death. The baby died seven days after birth, before the U.S. Supreme Court could hear an appeal to the Indiana decision. This case and that of Baby Jane Doe in New York outraged advocates, who worked tirelessly to get the U.S. Congress to pass legislation in 1984 prohibiting the withholding of “medically indicated” treatment from any child born with a disability.
I was born in 1982 so I can’t help but sit here, my fingers trembling at the keys of my computer, my eyes misty and my daughter within me is tracing my right rib cage with her toes in an ungraceful fashion. Russ and I have the immense privilege to be served by a leading pediatric cardiology facility and team, whose patients are often children with Down syndrome. There is no trace of discrimination among the team of professionals and it is evident that their aim is to provide our daughter with the most high-tech, effective and life-giving operation that is within their power to give. Yet, in MY LIFETIME, this was not the case for so many like our little one.
The tireless voices…the brave actions…the relentless forward movement of this story, by those who chose not to sit in silence while evil prevailed, but who chose to confront the evil of their time- these are the men and women on whose shoulders I stand. Pluto and Aristotle spoke out to give publicity to ‘feeble’ infants rather than the shameful elimination of them in ancient Greece. The Kennedy brothers used their power to reveal the atrocious conditions of institutions and enable research for Down syndrome. Countless journalists and doctors refused to be silent when society had accepted evil as a norm. Families chose not to allow institutional care to swallow their children. The unnamed fathers and mothers who reached out and offered counsel and support to other families with Ds. Kay McGee and her successors at NADS, who continue to fight for equality, care and the celebration of children with Down syndrome. The advocates who didn’t sit still when Baby Doe was being eliminated and changed the law in favour of a better story. And many others who have influenced better care, education and life for children with Dd. These are just a few mentions in a very tall pyramid of shoulders that I stand on.
The day after we received our daughter’s likely Diagnosis, I unwrapped a beautifully assembled wicker basket we had been given by our genetic counsellor. It was Beau’s Basket- a young boy with Ds whose mother instigated the creation and delivery of these stunning gifts in an effort to influence the tone of a Ds diagnosis with as much celebration and joy as can be communicated without words. Inside the basket was a hand-crocheted pink baby blanket, a stuffed monkey (with a name tag- ‘Ollie’- heart-warming because our dog’s name is Ole), a few toys, blankets and a beautiful handmade beanie/toque. There were resources galore! Handouts, books, notes of encouragement and a photo of Beau and his beautiful family. There was a card in the basket with a number to call for the support of a community of people who had walked this road before us. Whose shoulders we could stand on.
When I called the number on the card, one of the most friendly voices I’d ever heard answered my call. Her name is Susan. I am sure I just rambled out the initial facts of our story in an attempt to explain my call. She was the first person I spoke to about our baby’s diagnosis, aside from my parents and the staff at the hospital. Her first response was one of celebration, “Congratulations!” She put me at ease by explaining her own story of having a 15-year-old daughter, who was born with Ds and whose diagnosis they found out at her birth. That Saturday, only 3 days following our diagnosis, her and her husband, Tony, invited us to their home where a couple other families with Ds were stopping in to meet us as well.
I will never forget walking up to the door of their home. I hadn’t met a child with Ds for as long as I could remember and I was nervous because I feared my face would betray me and give away the disappointment I would feel in realizing what my own daughter would be like. I won’t share her name to protect her, but when the door opened, a charming, welcoming and energetic young girl met us with oodles of enthusiasm. I was in fabulous shock. This was not the picture I’d had in my mind of what Ds would look like. We met two other children that day, a two-year-old boy and an adolescent boy- both equally disturbed the preconceived ideas I held for what our future would look like. These three families made us feel like their family. They shared their stories and offered encouragement as we were initiated into this tribe. When the door closed behind us and we made our way back to our vehicle, our hearts were light. I remember feeling speechless by the experience, these kids are amazing I thought. We had experienced such love at their home.
In just a short visit, we had learned that the bright 15-year-old young lady who had met us at the door, was attending general-ed high school and had learned to sing in key (a difficult feat for many kids with Ds). She confidently talks, twirls and communicates with a bursting desire to share her stories. Her mother, Susan, founded the Down Syndrome Connections North West non-profit, which connects families with Ds in our area. She pioneered this group with another Mom and their aim is to create a touch-point of connection for families like ours within the first year! One of the most memorable things she told me that first day, was that the story has come a long way in a short time and that children being born with Ds today, have far greater access to developmental therapy, integrated education and future opportunities than the past generation. What a different story we get to live in today, because of the ordinary warriors whose shoulders we stand on. Warriors like Alaina Stevenson, whose baskets in her sons name, have become the positive narrators of a story which families, like us, find themselves in. Although she treats me as a peer, Susan is a giant to me. She has allowed me to climb up onto her shoulders and see a greater future for my daughter than I ever thought possible.
I am hopeful, that my shoulders will one day be a starting point for another and that I can tell a story which creates a stronger tomorrow- because the story of Ds still needs people, who will not stay silent when evil prevails. I am so grateful for those who have done this for my little girl. Thank you, thank you, thank you.
Here is one such woman, fierce and brave, speaking out and confronting the new wave of modern day eugenics, enabled by Non-Invasive Prenatal Testing, before the United Nations.
A name is full of meaning and can be powerful, so choosing a name for our daughter has been something we’ve spent much time discussing. Hilariously, Rachel means ‘little lamb’ and Russ means ‘fox-coloured (red)’. So this lamb and her fox have been keen to identify our daughter without reference to the animal kingdom!
These two names hold a vault of meaning to us. Firstly, my sister is Jani Ann. She is the second born girl in our family, my slightly younger sidekick and best friend growing up. Today, she is a woman I am very proud to be so closely related to! She carries a sassy passion for life and music in one hand, and a fierce compassion for people and the marginalized in her other hand. We share a memory bank of stories from each chapter of our lives and throughout, I’ve always called her Jane. Anneka Jane is a play on her name, in her honour. Jani Ann.
Secondly, the meaning of these names hold great depth for both Russ and I. I was raised in the church and the concept of God’s grace was not unfamiliar to me throughout my early years; yet grace has become the cornerstone of my life over the past decade in a way that has brought power, peace and joy to my life in a redeeming way. It was grace that touched my young heart and brought me to my knees at a tender age where I recited a version of the sinner’s prayer. Over the years that followed, I allowed the perfection of Grace itself to be muddied by natural laws of earned favour, performance-based approval and self-righteous merits. Striving persisted into the post-prodigal chapters of my adulthood. My desire to gain favour with God was fervent, but the road I believed would lead me there was merely a gauntlet of service, prayer and study. I was constantly examining myself and my eyes were fixed on me.
The narrative of ‘try harder, pray more, sacrifice greater, serve further’ was the undertone in what I heard from pulpits and read from the Bible through my ‘works-based’ lens. The questions mounted and stole confidence from my secure place in Christ. Was I doing enough? Could I do more to secure God’s love? Was I worthy of heaven? Could I lose my salvation?
This thinking becomes detrimental to grace. My belief that I had to work hard to retain my place in God’s ‘good graces’, produced in me a self-righteous arrogance for putting in the ‘hard work’. Religious entitlement tainted my perspective as I took on a ‘justice-seeking, sell-all-and-give-to-the-poor missionaries’ identity. It pains me to admit this, but it was easy to believe that somehow I was more pleasing to God than others, because I had taken certain steps of faith and given up a cushy existence, to serve children who were orphaned and HIV positive, in Uganda. I’d believed that a missional lifestyle would secure my place with God, and I rested in my own works. Such false security.
This religious theology of “earning grace” can so easily cross over to the belief that if we are ‘good‘ people, we are accepted by God. In fact, this concept has so deeply influenced our society, that mainstream thinking promotes the concept that being ‘good’ IS the path to heaven, for those who acknowledge there may be a heaven and hell. I believed this too, just in a slightly more ‘churched’ construction. After all, it can seem difficult to embrace that God is Love AND that good, charitable and kind behaviour in itself is not the way to heaven.
The biblical parable of the man with two sons sheds light on two stances in life that have kept me from receiving God’s grace. One son is recklessly sinful, choosing a scandalous path far from the Father’s house. He is the picture of unrighteousness. The other son is impeccably good, choosing a life of service in his Fathers home, believing he was earning his place. He is the picture of self-righteousness. Yet the beauty of the parable is seen in the Father. He does not shun his unrighteous son but waits in constant anticipation for his return. Equally, He does not reward the self-righteous son in relation to his service but hopes that this son will realize all that is already rewarded, by virtue of sonship, not servanthood. He offers each an identity which is intrinsically based on their identity to Him and is unrelated to their behaviours/track-records. In the same way that Jesus did not have to sin, to become sin…..we do not rely on behaving righteously, to become the righteousness of God. And yet…this gift of God’s righteousness compels us to be like God as we embrace His identity for ourselves.
“For He made Him who knew no sin to be sin for us, that we might become the righteousness of God in Him.” (2 Corinthians 5:21)
This grace. The grace that changed me, changed my wants, transformed my desire, reiterates over and over to me WHO I AM…..because of WHO HE IS. This grace, this Father, who waited patiently while I rebelled, while I grasped for life in futile efforts- He waited for me without imputing my wrongs on me when I returned to Him. This Father, who saw my good deeds, who watched me proudly strive, sweat and bleed in the service of the poor, hurting and orphaned in His name. He saught me out….reminding me of my true worth- apart from my service. He lit my heart up to serve, from a place of confident identity in Him, rather than in my effort to gain a place with Him.
And now, each day, I live with the knowledge that I am not good, apart from God. But I am a daughter of God, a woman who is accepted because of Jesus gift that I’ve humbly received. This identity comes with the confidence that I am not condemned; rather, I am standing right before God because of Jesus. He is the WAY to God. And in light of this truth, my heart, feet and mind align with Him and I’m continuously being transformed by this identity to look like Him and reflect Him in this world.
I need God’s grace and favour every day, as I look ahead to raising Anneka Jane. And, I want her to know (and Madeleine for that matter) that her identity is not qualified by her abilities nor tainted by her different abilities….but her identity is firmly established by Jesus. He is able to set her feet on solid ground, to welcome her to walk on the waters of life, to lavish her abundantly with health, hope and dignity and He calls her His beloved.
I believe the same grace is for you. Good, bad….or somewhere in-between. Regardless if you strive to be good or strive to find life far from God- His love is for you, His identity is offered to you. Because none of us is perfect on our own, the perfect standards of God were accomplished for you by Jesus- who IS Grace. Hide in Him…..and you will find LIFE ABUNDANTLY
Anneka Jane is already a gift from God. She will carry a name that speaks of the Grace and Favor promised for her….and luckily, there is no reference to the animal kingdom in her name!
We get to meet her on Thursday!
Russ and I had been dating for a little while, when we ran into our first….um…altercation, you might say. I was fighting the well beaten path of my heart which had faithfully taken me out of relationships time and time again. He was fighting for me. Russ is a forester and his sanctuary is often an overstocked forest, thick with trees that need to be managed. And so it happened, he was running a property line on some timberland the days following our…um….wrangle of hearts.
God, I love Rachel. Show me if she is the right girl for me….or if I should let her go. He breathed this prayer among the timber that mid-spring day. As he continued his work, he came upon the shed antlers of a young buck. Although he’d found many sheds in his time, this was an unusual find as the set were laying next to each other. Often deer will loose one antler at a time and can even run for days with one antler. As he picked up this find, he heard the familiar voice of the Creators whisper.
This is a good pair. It’s a good match.
As he absorbed these words his heart lifted. It was a promise of things to come. I was not to be let go….for I was his pair, his good match. He threw the antlers into his pack and made his way through the woods with the wild sense of witness to a future that was yet to be. Later that night he held the antlers again, and pondered the 4 points each antler possessed. Children.
Married and talking in hushed tones as our daughter Madeleine slept in her nearby crib, Russ grabbed the antlers from his nightstand. His rough and slivered hands caressed the tines and he humourously asked, “Which one do you think Madeleine is?” I giggled at his seemingly ‘crystal ball’ approach to the set. His hand found it’s way to the smallest tine at the bottom of the antler when he pondered. “I wonder what this little one means.” And without a moments notice, he proposed, “I wonder if we will have a child with special needs.”
Everything in me paused. Yes, I’d heard that. Deeply. I could tell the thought was running through Russ’s head as though he had heard it in real-time with me. Something weighty grabbed those words and a glimpse of our family flashed in my mind. And then it was gone- maybe because I felt afraid to let my mind settle there, for fear that my imagination held the power to create a reality. Or because Russ continued the guessing game, assigning gender to the tines. Yet, just as the antlers had previously spoken to our future and family, we had seen something with our hearts that could not be unseen.
(Children with Down Syndrome are commonly smaller in stature than typical children. So far, our little girl is measuring small in her arms and legs. Small is not less, it’s just small.)
I swooshed Madeleine through the jetstream of the hot tub at our leisure centre. She loves the water. It was a quiet day at the pool, and with the exception of a few elderly folks who walked the lazy river, we were alone. Soon a family came through the double doors, onto the pool deck. The mother was stunning and moreso, because she shone with the look of a new mom. Holding her brand new babe, she found a seat next to the children’s splash zone.
Her husband took the hand of their 3 year old daughter and led her into the pool, protecting her as she fearlessly attempted the slide. When they made their way into the hot tub, I acknowledged them with a nearly silent ‘hello’ and diverted my attention to Madeleine who was trying to excavate a smile from the little girl whose arms were firmly secured around her Daddy’s neck. She had Down Syndrome.
A vision of myself being a mother to a child like her, raised its head above the parapet of my subconscious. Before this vision ducked out of sight, a certainty spoke loudly – I am seeing this for a reason. I’m aware that it’s easy for hindsight to attribute undue weight to the conviction of that encounter. However, in my truest evaluation of that day, I can confidently say that my spirit knew something that I did not allow my mind to believe.
Among other outdoor activities, Russ enjoys plowing the snow from our drive with his quad. It’s his ‘nothing box’ as my Dad would say, drawing from the concept that men and women’s brains are compartmentalized like boxes and spagetti, respectively. When the heavens blanket our property with snow, Russ is no procrastinator in clearing it.
On this particular day, while our chocolate labrador, Ole, chased the quad through the thick snow, Russ’s nothing box was being tresspassed by thoughts of having a child with special needs. He couldn’t shake the feeling and his thoughts swirled like the snow as it sprayed the edge of the drive. This is his story and it is far more personal to him than I can narrate, but in hindsight, this was his hot tub moment.
The night before we received the call and found out we had a high chance our baby would have Down Syndrome, we spent our dinner conversation discussing in great detail what we would and wouln’t do if we had a child, specifically with Down Syndrome. Our conversation was founded strongly on this most beautiful portion of scripture:
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts,a]”>[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
Before we knew our baby’s design, we knew that if God’s thoughts toward our baby were already vast in number, if His knitting needles had thread an extra chromosome into each cell and if our child’s days were already written before even a breath was taken- that no diagnosis could steal these powerful truths. Even after such a hope-filled conversation, we each hoped we would never have reason to revisit the conversation.
These were preparations of our hearts which felt dismissable in their moments. Yet in hindsight, they were the assurance that our futures are known by the Spirit, who lights our path and equips us for what is to come. Once we received our babies Diagnosis, we had reason to share our experiences with each other. When we recounted the night we had looked together at the antlers, the individual experiences we had in the hot tub and the snow and finally, the conversation that we had only hours before we found out our baby has Down Syndrome, we felt wrapped in love.
And then this happened. I woke up yesterday morning, far too early. I coulnd’t sleep so I joined Russ in our living room and blearily rubbed my eyes and cozied myself up in my favorite chair. I don’t know if I’d had a dream about it, but I was reminded of a prophetic session I’d had in my hometown of Cranbrook. A team of ministry students from Bethel school of Ministry were visiting a church (House of Hope) and offered prophecy and pray for any who desired to hear from God.
In April 2015 I was 9 months fresh off the mission field and thrust back into the swing of North American life- a ‘regular’ job and a cold cold winter. I felt entirely void of purpose. My Mom and I decided to interrupt our thrift store hopping that Saturday and head to the church for the quick prayer appointments we had been assigned. I was ushered to a small table with a young girl and guy. There were no initial introductions besides smiles and first names. Quickly and naturally they began to speak to me from God’s heart. I recorded it on my phone.
Tucked into the chair yesterday, I played this recording for the first time since that day. There was a piece about worship, a relationship, childrens ministry (?), God’s favour and then this:
“One more thing before we pray for you…I got the word ECE (early childhood education). I don’t know if you’ve thought of ECE- like helping out the kids who have developmental delays. I just feel like you’re going to be helping out with that…helping them gain their confidence and know who they are.”
I sat with tears mounting in my eyes. I had never paid attention to this 30 seconds of the prophecy before. It was almost hidden to me until now. But 3 years ago, before Russ, before Madeleine and before this little one in my womb….God was there. Once again, He spoke into being the plans he had for me, before they made sense to me. The Prophetic is given to us from God to strengthen, encourage and comfort (1 Corinthians 14:3)- and it is accomplishing all three in me.
If you have the gift of Prophecy, please, step out…be bold and trust God for His words to be spoken through you. I don’t know this young lady’s name and honestly, I wouldn’t be able to pick her out of a crowd. But she imparted heaven into my earth. She heard foreshadows from the heart of God and spoke what was not, as though it were. And now it is!
Love had laid for us the stepping stones for our hearts, even when we were oblivious to the destination. Beautiful, isn’t He?
Love is not written on paper, for paper can be erased. Nor is it etched in stone, for stone can be broken. But it is inscribed on a heart and there it shall remain forever.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
One of the most beautiful sounds my ears have ever heard, is the heartbeat of the baby within my womb. I remember the first time I heard Madeleine’s heartbeat. I was taken off guard when my Doctor offered to listen for her heartbeat. I had never been pregnant before and thought that heartbeats could only be heard well into the pregnancy- not at 10 weeks! I awkwardly laid down on the crinkly paper and shifted my pants down to expose my invisible bump. My doctor traced the Doppler around my navel, searching for a beating rhythm other than my own. Suddenly, it was audible. 145 beats a minute… it was her life, in audio.
The senses are brilliant at absorbing and communicating to the heart. Each ultrasound is a sensory overload to the eyes….a sneak-peek at the life within. Every movement tells the heart that this baby is coursing with life and movement. To watch my unborn child kick, wave her hands over her face and roll from side to side, is binge-worthy. Recently, my tummy became a playground in which each kick, poke and prod reminds me of the life within. I feel her dancing on my bladder to the rhythm of my heart. The audible sound of her heartbeat confirms to me that she is alive and that there are two hearts currently living in my body. All of these senses etch into my heart a love for this little one that will remain forever.
When our ultrasound revealed that our daughters heart may not be forming correctly, we were referred to the Pediatric Cardiology wing of the hospital for an echo cardiogram. Initially, they told us that there appeared to be a possible hole in the upper septum (dividing wall) of her heart (Atrial Septum Defect) which may or may not close after birth. They encouraged us by explaining that it was a non-emergent defect that could be repaired as far on in life as adulthood. It was best case scenario as far as congenital heart defects go.
On Monday, this past week, Russ and I went together for the echo. It was so nice to have Russ in the room. Our babies heart is only as big as a quarter at 24 weeks and to our untrained eyes, her heart appeared to be pumping and beating with 4 chambers quite beautifully. Magical really. We had been praying regularly and believing that all evidence of this defect would be erased and her heart would be perfect in this echo. Our own hearts were especially light because we had a good friend offer to look after Madeleine for the day. We kept joking that we were on a ‘hot date’! As we waited for the Doctor to review the results of the ultrasound, we took turns weighing ourselves and laughed together at our immediate resolve to eat salad for every meal. We reminisced technology and the advances we were blessed to have at our disposal.
When we finally sat with the doctor, we were like two teenage kids, footloose and fancy free….not prepared for what she had to say. She began by inquiring about our knowledge of the baby’s possible heart defect and then graciously she allowed me to describe in layman’s terms what we understood. She turned her computer screen toward us and typed in AVSD. I recognized the acronym from a Facebook group I’m in, where families of children with Down Syndrome and heart defects share their stories. I knew immediately, our little girls heart condition was worse than originally thought.
50% of children with Down Syndrome are born with congenital heart defects. Our baby is in that 50% and the structural deformations can be successfully repaired with open heart surgery between 4-6 months. I’ll save trying to describe the medical scenarios of this condition and allow the picture below and the Youtube clip to explain for me. In short, the middle wall dividing the right and left sides of the heart are open and cannot remain that way in order for our little girl to survive.
We left the Pediatric Cardiology wing hand in hand, and as we walked past the large round windows painted with child-friendly images of turtles and butterflies, I could sense the weight of this news descending, replacing the lightheartedness of our date. As we navigated the hallways and elevators to make our way to the cafeteria, I told Russ that although I believe God can absolutely heal her heart, I have a strong conviction that God is perfectly ordering every element of this little life in order to show off His glory through her. I want to hold these two truths in each hand, believing that the supernatural is possible while being grateful for skilled surgeons and modern medicine. I want to trust that whether healing comes supernaturally or naturally via medicine, that Gods perfect plan is being worked in her. And also in us.
When we sat down for lunch, we talked about the surgery. It was in this conversation that we both watched each other fight to maintain socially acceptable emotions in the bustling room. And then, almost in tandem, we cried. Our fragile, precious daughter will have her sternum broken, her blood re-routed to bypass the heart, her septum repaired with gore-tex cloth and then her little body will be stitched closed. She will carry a lifelong scar and for 6 weeks, we will have to scoop her up, rather than lift her up from under her armpits, to allow her chest to heal. She will have tubes, wires and tape all over her tiny body. She will require morphine for the pain and will stay a week at the hospital if all goes well.
The internal drive of a father to protect his daughter from suffering must have felt like handcuffs to Russ. There will be nothing he can do to prevent these realities if her heart requires this surgery. He kept saying, “I just don’t want her to suffer”. A helpless feeling swept over my heart, resigning it to complete dependence on her Creator.
And then, came peace. A peace that guards the heart. Guards it from fear. A peace that conflicts with diagnosis. Peace that assures the heart it’s anchor is holding stronger than the might of the storm. In Christ alone. I believe this peace will guard our daughters heart.
If you are a prayerful person, we would be so grateful if you would join us to believe that God is restoring our daughters tiny-quarter-sized heart while she is in the womb. We have a follow up echo cardiogram early in May and we are trusting that God can do miracles between now and then. Thank you for standing with us.
It was time to share our news with our families and friends. Having undergone the feelings of shock and concern in our own hearts, it was time to feel the tremors of those feelings in the faces and voices of those we loved. I carefully crafted a message to send out, which explained the diagnosis:
We have had some news on our little baby that we want to share.
Firstly, we are having a little girl…so Madeleine is getting a little sister!
Secondly, we had some genetic testing done and just found out that we are having a special girl…. a little girl who has an extra chromosome, also known as a baby with Down Syndrome.
I’m sure you can imagine the news was shocking and it’s still pretty fresh. We are on a rollercoaster of thoughts, feelings and looking forward holds many uncertainties. At the same time, we have some pretty neat experiences that show us God has this little girl in his hands and in His perfect plan for us…and we are both trusting Him to provide all we need for the journey ahead. We are still very excited to have our second baby on her way.
The syndrome is not caused by anything Russ or I could have had or passed on….it’s just a freaky, fluky situation that causes her to have three rather than two of the 21st chromosome.
We know many of you might not know what to say to us about this… I’m not sure I’d know what to say either. Please consider that we are both adjusting to the news ourselves and have a lot to learn about Down Syndrome.
We know this baby will bring her unique design to our whole family…. including you, and there’s a great/short book called “Your Loved One is Having a Baby with Down Syndrome” that’s free to download here: http://downsyndromepregnancy.org/book/your-loved-one/
It’s got some great info on Down Syndrome and a few great tips on responding to our news that would really help in protecting our hearts as the news is shared. 😊
One specific one is that we’d really appreciate if you could avoid saying ‘I’m sorry’. Even though we are adjusting to this diagnosis, it’s not something to be sorry about because Russ and I are very happy about our having this little girl.
So that’s the big news…. the second little Hegedus girl is making her way to us…and already in our hearts. We trust she will be a blessing and be a source of joy to our family!
We love you guys and appreciate your love and support,
Rachel & Russ
As I pressed send, I imagined what my brothers and sister were thinking as they read. I waited for the first reply… and made bets with myself who it would be. My Mom. Sure enough, she was quick to respond. I had called her the day we got the news and she and my Dad had felt the surprise with us in real-time. My Mom said the same thing then that she had said to us when we surprised her and my Dad with news I pregnant with Madeleine (and not married or even engaged)….”Every baby is a blessing”.
The replies began to roll in…. and with them a healing balm that smothered my heart in the vision of our special little girl being a part of a family who wanted her and was waiting with arms wide open.
My sister and I are the only two girls in my family and she replied right behind my mom:
Chris and I are sending a mountain of love to you all as you adjust to this big news! Every good and perfect gift comes from Him. I know the love you have for baby girl number two will be shared by all of us, and it will cast out any and all fear. You know, two girls in a row sounds familiar… And those second borns, while strange, can be pretty awesome!!! Thank you for sending along the booklet, I’m looking forward to reading it and learning more, but especially to shower this little darling with all the love in the world!
The replies came in steadily, each with a unique stamp of love from each brother and their wives. I sent a similar message to a handful of my dearest friends far and wide, and their replies were equally affirming. As the news began to feel more public, I could feel the sense of a strong community around us, and the feeling of being alone vanished.
My sister caught up with me the next day and she had spent her night binging on YouTube vids related to Down Syndrome! She had watched all the same ones I had and she had sourced a number of local groups and organizations to support us. I could feel her saying, I may not be close in miles, but my heart is where you are and I’m here for you.
Our daughter has an amazing family to thrive in. I can’t wait to introduce her to them.
In a few days, I had educated myself in as many ways as I knew how to about Down Syndrome. I knew this education was just beginning, but my head was sore from the sheer volume of knowledge I’d gained in such a short time. I didn’t know it, but my head had run ahead of my soul.
I love this parable.
“There was once an American traveler who planned a safari to Africa. He was that typical Type-A American tourist, who many of us may be and who I admittedly am when I travel. We do our research about this travel destination and we have a timetable, maps, and a clear agenda of the things we need to see and do. Some local people had even been hired to carry some of the traveler’s supplies as they trekked throughout the land—it was that level of planning.
On the first morning, they all woke up early and traveled fast and covered a great distance. The second morning was the same—woke up early, traveled fast, and traveled far. Third morning, same thing. But on the fourth morning, the local hired help refused to move. Instead, they sat by a tree in the shade well into the morning. The American traveler became incensed and irate and said to his translator, “This is a waste of valuable time. Can someone tell me what’s going on here?” The translator looked at him and calmly answered, “They’re waiting for their souls to catch up with their bodies.”
In my quest to fill in a few more blanks, in the countless blanks I had about what my life as a mother of a baby with Down Syndrome looked like, I headed to the library. I adore libraries. They possess such a magical feeling of hidden knowledge stashed into each book. And shelf upon aisle upon section holds more riches than could ever be calculated by mere observation. And I had found my way to the particular shelf which promised to offer me the insight I saught.
There were 3 books on the shelf that correlated to Down Syndrome. I had already read 2 of them. Surprised by this, I gave the greater isle my scattered attention and noticed that the 3 books I’d found were amongst numerous books on Autism, Disability and many other behavioural diagnosis. And as I looked back at the books I recognized, I froze up.
I imagine my soul would have spoken up at some other point, if not in this aisle at the library. Either way, I would not have been ready for it. I looked down at Madeleine who was observing the shelves for herself, from the akward angle of her stroller. A sickening feeling began to creep up my spine and I immediately wanted to escape. I looked once more at the variety of books this isle offered and my soul expressed to my searching self what it really felt, “I wish I had no reason to be standing here.”
I’ve often found it challenging to embrace my true emotions when they sit in conflict with how I want to feel. In this case, I wanted to feel educated, positive and entirely confident that this story was going to be a wonderful one, with purpose and meaning tucked into each new chapter. And moreso, I wanted to feel that I was unmarked by disappointment. A religious filter influenced this stance- afterall, how could I feel sad about something God had created?
The books I’d read by mothers who have walked this road had all encouraged me to grieve the child I thought I was having, in order to embrace new expectations of the baby I would have. But I thought that was advice for sissies or particularly emotional women. Ha! Not me. I was afraid to acknowledge my own vulnerability. I feared that tangled up in my raw truths, was the honest wish that my baby would not have Down Syndrome. And as I stood in the library, hearing the sounds of hushed motion around me, I felt my soul catch up with my mind and I rallied Madeleine in the stroller towards the doors…..praying my little one inside would not hear the sound of me rejecting her.
My heart broke that night. I felt off all day until Russ came home. I was short with him and offered no warmth, instead, avoidance. When the dishes were done and Madeleine was bathed and nearly asleep, we met each other on the couch….and his inquisitive gaze unlocked the floodgates.
“I realized today, that I don’t want to have a baby with Down Syndrome. I feel aweful.” As my tears fell and the Kleenex box emptied, wave after wave of emotion was unleashed. I was grieving. The denial phase had ended…I was in new territory again.
I don’t know any expecting mother who hopes or wishes that her baby will have Down Syndrome. The mothers who have traversed this hormonal, heart-broken, helter-skelter adustment to a Down Syndrome diagnosis, are wise and humble. I had no choice but to embrace this overwhelming grief. Not because our baby had Down Syndrome…but because the baby I thought I was having, was no longer.
Over the next 48 hours, I binge watched Youtube and every single clip that had anything to do with Down syndrome (Ds). I watched countless families stories, a day-in-the-life-of home videos, educational clips about Ds, and the options went on and on. Some of the videos were encouraging, hopeful and honest. Others were discouraging, ambiguous and painful to take in. Among them, was this short family story that touched my heart in a meaningful way.
I also binge-read every book we had been given by our genetic counselor, Tanya. There were books about how to tell family and friends about the diagnosis. There were books written by families with children who had Ds. There was a book of stories of families who were given a Ds diagnosis and they detailed their personal experiences of receiving the news. If you’re reading this because you too have a Ds diagnosis for your little one, this book is worth having. I read The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood which proved to be the most informative and resourcing book. If you’re reading this because you too have a Ds diagnosis for your little one, this book is worth having. My book collection had grown exponentially. And just when I felt I’d got a handle on the books, I began to order new books on Amazon….
TED offers many intelligent and experienced people discussing disabilities. Our Pediatrician had suggested we watch this talk, by a mother of a little girl named Fiona who was born with a chromosomal abnormality. It gave us a unique perspective of our built-in perspective of ‘good’ and ‘bad’, and it challenged how we view the journey ahead of us. It’s worth watching.
And then, of course, there was social media and the handful of Facebook groups for families of children with Ds. I was adding myself to these groups without hesitation and grasping for knowledge and understanding for this path I found myself on. Google offered countless articles, blogs and resources to read and I somehow couldn’t stop myself.
After days of this, I would lay my spinning head on my pillow, and as the quietness filled my mind, I’d frantically realize there was so much I had yet to know. I would fall asleep reading the long threads and mothers comments on facebook posts in the Ds groups. The blue glow of my phone would eventually watch me sleep…I was dreaming of my baby.
The next day we drove back to Spokane for the scan and a chat with Tanya. I felt the emotions of the day brimming at my eyelids as we drove and talked.
When a good friend had called me a couple years ago to tell me he had ‘just the guy’ for me, he described Russ by saying, “He’s a Jesus guy, just like you.” He was right. I’d prayed that if I were to be married, it would be to a man who would lead our family in faith. I dreamed that together, we could share God’s love and life as the strongest bond between us. God fulfilled that desire by bringing Russ into my life.
As we drove that day, his spirit lifted mine from the trench of pity and pain that was sucking me in. His voice did not quiver as he said with conviction, “We aren’t just going to be average parents to this little precious one, we are going to be the very best we can be.” A few miles closer to the clinic, after a conversation about God being in control us desiring more than to be ‘fair-weather Christians’, we agreed that our faith in God was our lifeline for every corner of our lives, not merely a religion we associate with. And in the midst of our conversation about our babies likely diagnosis, Russ said these words, “This is where faith lives.”
When those words travelled from my ears to my heart, I could sense the Holy Spirit in the car with us. It was as if we were embarking on a journey that would not only require faith but would create in us as a couple, a deeper, vivid and living faith from which to be parents and continue to experience God’s lavish love for us. And the Holy Spirit was present, affirming that He was near, empowering and comforting us as we stepped forward.
We arrived at the Maternal Fetal Medicine clinic. I felt like every staff member knew our news. We initially met with Tanya again and she walked us through the results of the tests. She wrote in pen over the printed results, 82%. This was our currently known risk that our baby would have Down syndrome. I won’t lie, I’ve never thought 18% held such good odds.
To determine the further likelihood of Down syndrome, they wanted to do another ultrasound to look for ‘soft markers’ of Down syndrome. Tanya explained that babies in the womb can present with particular features associated with the syndrome…which would add to our 82% if found. Flatter facial features, white spots on the heart, shorter than average femur bones and a slightly turned in top joint of the pinky finger were some that she mentioned.
I laid in the dark room, with my belly exposed and the ultrasound wand swishing the goopy gel around in search of our little swimmer. All of the sudden, as I fixated my view on the grainy black and white screen, a little hand came into clear view and waved at me. There it was! The little pinky was turned in slightly- but noticeably. At that moment, 82% disappeared. I knew our baby truly did have three copies of the 21st chromosome.
Following the ultrasound, the doctor met with Russ and I to review the scan. He began to re-explain the purpose of the scan in detecting soft markers and then told us that many of those markers had been found. The white spots on the heart, the shorter arm and leg bones, a glossy look on the stomach and that slight curve of the pinky finger. Each of these markers added certainty to the diagnosis- although none of these could allow him to give us a 100% diagnosis. Only an amniocentesis could provide the genetic verification of that- a procedure where a long needle is inserted into the womb and a sample of amniotic fluid is used to verify the diagnosis. I had sat through this very same procedure with a dear friend and was not keen to undergo it myself!
Russ, being an analytical kind of guy, asked if our % of risk had gone up. The doctor sympathetically nodded yes. Russ, not yet satisfied, asked if it was up to 90%. The doctor shook his head and said, “Oh no, more than that…I’d say 98 – 99% really.” I looked at Russ, as I watched his heart letting go of the last hope that this was all a dream. I offered, “Honey, he can’t legally say it’s 100% because we haven’t done the amnio’….but essentially, he is saying it’s for sure.” I looked at the Doc to be sure I wasn’t mistaken, but he nodded his head in agreement and then offered some comforting words to us.
He suggested that we think about and then decide what we would do with the results. I’ve read many statistics about prenatal testing and the subsequently frequent termination of babies with Down syndrome. Statistically, 90-95% of babies diagnosed in utero are terminated. He had laid out a long list of complications which our baby may face, because of the diagnosis. However, our hearts knew that this special and unique life was not ours to end. It was ours to steward and was entrusted to us by the Creator, who breathes purpose into each life. We told the Doctor we would not consider termination.
I was thankful that at that moment, he said, “That’s good, we always advocate for life.” Life is what we have. A tiny, intricate, sacred life growing steadily inside of me. And we have the redemptive, abundant, powerful life of Christ, coursing through our family. We left the clinic knowing we would never be the same again. Our lives had changed forever. As the weight of the day began to settle in, and the silence between us became vulnerable, I heard Russ’s words. “This is where faith lives.”
As promised, Tanya called me back on Tuesday. Her call came late in the afternoon and Russ was home. I handed Madeleine to him as I glanced at the familiar number on my phone and I perched on the couch, looking out the window. I half wished I’d grabbed our calendar to remove the guesswork from my expectation of a re-scheduling of the blood test.
In the very short time I’d had with Tanya, I already appreciated her clear and informative approach to genetic counselling. It’s so rewarding to see someone so well suited for their role. Her voice was friendly and we went through the standard niceties of how are you, etc. Her tone shifted ever so slightly and she asked, “Is this a good time, do you have a few minutes to talk?” The answer to her question came out of my mouth, as my heart suddenly raised a red flag and began to wave it in the pit of my stomach. “Yes, now’s a great time….Russ is home.”
I tried to compensate for my gut reaction by focusing the conversation on the reschedule. “Are we going to have to reschedule?” I asked, suddenly hopeful the answer was yes.
“Actually, the lab has sent the results, and the reason they are late is that they wanted to verify and be sure of their findings.” Again, my voice carried a tone of confidence as I heard myself respond, “Oh, okay…..they have actual results?” Inside, my truest self knew and the red flag no longer waived, it just stood, certain of the news that was about to be heard.
The bliss of not knowing suddenly shattered as Tanya gently, yet clearly explained, “The results are showing a high risk of Down Syndrome.”
There it was. The bliss was gone and the words Down Syndrome took it’s place, causing my mind to grasp for some level of certainty. I suddenly became conscious that Russ was holding Madeleine and listening to my side of the conversation. I don’t know why that silly voice of mine continued to carry on the conversation as though there was nothing noteworthy happening…..or perhaps it conveyed a fore-knowledge of the news. Almost cheerfully, I said, “Oh, alright. So now what?”
I could hear Tanya’s slight surprise at my tone and acceptance of the news. She didn’t miss a beat though, “We would like to have you come back if that’s possible because we will do another scan to determine a more accurate level of risk for Down Syndrome. Could you come in tomorrow?”
When I hung up the phone, I could feel a numbing sensation washing over me. Russ looked at me inquisitively and all I knew to say was, “It’s not good hun. It’s Down syndrome.” There was a nonsensical thought that circled my mind as I looked at Russ absorbing the news. Am I the cause of this? It’s my fault he now has to face this. What is he thinking of me right now?
Of course, those thoughts were straight from the destroyer of all good things. They were planted to bring shame and drive a wedge between me and Russ. But Russ’s gentle and tender love immediately removed those fears and silenced the enemies voice. We sat together, I cried and we just let the likely possibility sink in. Our baby has Down syndrome.