Heart

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.

-Rumi

 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

-Philippians 4:7

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.

atrioventricular-septal-defect

 

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.

Rachel

 

 

 

 

Diagnosis

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.

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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.”

Results

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.

Birthdays

Above is a picture of my 36th birthday (looking like I’m telling campfire ghost stories- ha!)….and next to it is a picture of my very first birthday. The years between these photos have been so rich and so jammed-packed with adventures, that I don’t necessarily feel OLD….rather wonderfully LIVED. Is that a thing? Heck Yes!

At Hillsong Leadership College, Brian Houston (the lead pastor) would consistently remind us that THE BEST IS YET TO COME. This phrase became a mantra for me and a reminder that God would never be finished with me.  I’ve lived with persistent anticipation for what lies ahead…and I’ve rarely felt that my ‘golden years’ were behind me. Today as I look ahead, I am certain this is still true.

The statistics of risks associated with maternal age, do not communicate this same enthusiasm for baby endeavours. At 35 years old, a woman steps into a world where the numbers begin to tumble and risk of having children with chromosomal abnormality climbs. Although pregnancy is trending higher among 30+ women…we are considered ‘advanced maternal age’.

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cdc risk chart

Source: CDC.com

When I was 23, I moved to Uganda. I spent 7 1/2 years pioneering a Non-Governmental Organization called Cherish Uganda. If you’ve known me- you’ve likely heard my story. A rebellious coming of age landed me on a Greyhound bus at 18, with blackened hair and heartbroken dreams. I was returning home from a spring and summer of tree-planting in Northern BC and my heart longed to unstick my feet from Canadian soil. I sensed a purpose that was ‘larger than me’ somewhere in a place I’d never been. I felt certain that I had been missing out on God’s best for me. I had run from Him because I had convinced myself I could map a better plan myself- but it had led me to the emptiest place I’d ever been. So as I sat on the bus, I turned my thoughts to God and the plans He had for me-which I’d all but abandoned.

“God, if you still have any possible use for me…if I am not too far gone, for you to redeem… I surrender my life to you…..whatever you want for me, I will do”. The sunlight streamed in through the window and I looked out at the spectacular scenery of Banff National Park, listening to the background humming of the bus. I looked down at my purple hair-dye stained hands as they held my CD player which was perched on top of my journal. In that quiet space, I heard a word whispered to my spirit, “Cherish”. It wasn’t a plan, it wasn’t a rebuke or even a conviction….it was a promise. God was not done with me and more striking, He was close and not distant from me. In the pitiful state I was in, there He was.

My life turned at that moment. It was the kind of turn that resembled a 180-degree change of heart…a true repentance. I unstuck my feet from Canadian soil and travelled as far from home as I could possibly get. Hillsong Leadership College in Sydney Australia was my first stop. There, I met my gorgeous friend Emma. She is a British, sanguine, firecracker of a girl, who I quickly grew to adore! We shared a room in our college house, threw pancake and champagne parties, skipped classes and found a passion for Christ and His church during our years at Hillsong.

Emma and I

Our friendship took me to England after college, where Emma was working as a youth pastor for a church called Christian Grown Centre. I arrived in September 2004 and worked alongside Emma- where we continued our quest to see God’s Kingdom realized in the lives of young people…whilst being adamant not to conform to a boring, religious mould that we so detested. It turned out, we were in the right place- because when I met Rick and Bev Murrill. They were the senior pastors of the church and leaders of a movement of church plants throughout the UK called Christian Growth International.  It didn’t take more than one conversation with them to figure out that they were faith-filled, mould-breakers themselves!

A few weeks after I’d arrived in England, Bev Murrill visited Uganda. She was taking a team of women to pray for and encourage the staff of Mildmay Uganda- a hospice for children living with HIV. The vice-president and founder of this centre was a tenacious British woman named Ruth Sims. She expressed to Bev that her team were struggling to face the overwhelming number of deaths among the children they attentively cared for. While Ruth took Bev through the hospice, Ruth explained that children without families were unable to begin medication because they would have no caregivers to support their stringent drug regime through childhood. So, although the life-saving medication was available to them, children were dying for lack of family and caregivers. Even orphan programs refused to provide care for these children, because of their HIV status.

God stopped Bev at a small bed, where a baby with HIV laid whose name was also Rachel. “Bev, you could DO SOMETHING about these children, if you want to.” These words could not be quietened in Bev’s heart as she returned to the UK and she returned with a catalytic anointing to speak in faith about an unseen response to God’s urge to ‘do something’.

baby

The details of how God’s plan unfolded through Cherish Uganda would take me a book to share fully. In short, I spent the next 10 years of my life pouring my heart and soul into the team and work that developed into a village of rehabilitation homes, a health centre, schools and an agricultural farm for courageous children who would overcome stigma, abandonment and abuse- to become symbols of HOPE for others living with HIV.

Kids

I arrived in Uganda with a couple suitcases full of good intentions. I left with a heart made so rich by the grace and love of God. His purpose and path for me included undeserved leadership which was a growth experience, an incredible group of friends whom I was honored to call my team, a church family (worshipharvest.org) who discipled me into the outrageous grace of God….and friends all around the globe, who joined us to be part of this amazing story of redemption.

I’m writing this short excerpt of my days in Australia, England and Uganda, to remind myself that the years I invested in this cause would NOT have been better spent having children of my own. I would not change those years or trade them for anything else. I bring to my marriage and family the witness of a miracle working God- one who responds to faith. The thousands of days I spent without a family of my own, were days that prepared me for them. Those years were PACKED with adventure, pain, Jesus, love, friends and the evidence that God uses our own brokenness for His plan….in which we become whole.

As I face a medical world that correlates my age with maternal risk….I look back and think that a greater risk would be entering motherhood without the certain knowledge that God does miracles, He heals, He loves, He provides and He holds our futures perfectly in His hands. As Russ and I embark on a new parenting chapter of having a little girl with Down Syndrome, we are full of faith for her life….knowing that He who has begun a good work (5 months and counting….), is faithful to complete it. Our little girl’s diagnosis does not lie outside of His perfect plan.

So bring on the birthdays….the best is yet to come!

Rachel

If Cherish Uganda caught your attention, please visit the website to check out the life-changing love that continues there today!

 

 

 

Clearblue

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Madeleine was only 8 months old when Russ and I looked into the Clearblue and saw another little one in our future! The tangibility of this new life was difficult for me to connect with initially- maybe because Madeleine had been waking up 5+ times a night since she was 3.5 months old and I was exhausted. Or maybe, because I simply did not feel pregnant. But blue lines don’t lie and the excitement of growing our family felt like bliss- being in exactly the right place at exactly the right time.

In January, one week before my 36th birthday, we found out that our little one is being ‘knit together’ with an extra 21st chromosome, also known as Down Syndrome. We have experienced all the ‘feels’ as we’ve received this diagnosis and adjusted our expectations to this reality. There are many unknowns ahead, but we are certain of this- that God who began a beautiful, good and perfect work in us…..is faithful to complete it in HIS way, for our best.

I’m writing this blog to share this unfolding experience with family and friends who want to know more than the headlines. There will be a few posts to get ‘caught up’ to a more real-time blog roll. Once we are ‘rolling’ I hope this blog will become a place of faith and community.

I’m also hoping to share our story so that others who find themselves embarking on a similar path, as unexpected as it comes, will not feel alone. In only one month, I’ve been embraced by a global community- a tribe if you will- of families who have been rerouted to this same path. It is their transparent blogs, real-time Facebook posts and informative podcasts that breath hope and comfort to me. If my story can do the same, I would be delighted.

Rachel