47. Trisomy 21 And An Honest Look At My Heart - Erica Dodd
May 10, 2022
I guess the most important thing about me is that I'm a child of God. And that's by his grace, that I'm part of his family. In late high school, a friend invited me to rate the gospel of John in the Bible and as we dish God really took me from this place of darkness. Too light and life in his son. And that segues into my story about my family, because the special person who share that good news is my husband, Matt, we met together high school and we're going to celebrate our 40th anniversary.
So that's some very special thing that we share. I guess another important thing about us is that we have three delightful kids they're seven, five and three, a girl and then two boys. And so with those ages, this week's been a special week with our second starting school and our youngest starting preschool.
The youngest starting preschool, Spain, a very amazing milestone for us because our youngest, his name is Noah and he has down syndrome, which I'm going to talk a bit more about later, but that's meant that he's had some considerable hurdles in his start to life.
And the fact that he's gone to preschool and he is going from strength to strength. That's, it's just an amazing Testament to God's grace and provision for us.
And I love spending time with women in our church and in our community and reaching out to those who don't know Jesus with his love. And because of Noah God's given me this unique opportunity to connect with other families who have a disability.
Matt and I have got to partner with some families and a new group called the 1 3 9 collective. Which if any of our listeners are interested in you can find that online, it's a private group on Facebook, or at our website, which is the 1 3 9 collective.com.edu.
We'd love to have you join me if you're a believing parent who has a child with a disability. We aim to be a network. So providing the opportunity to share stories, to make other parents, perhaps with a child who has a similar diagnosis, if that's an interest to you. We're having our first meetup in the next few weeks but mostly it's online on Facebook and just sharing what's been happening for our families, prep points, things that we might not be sure about that other people who are further on in their journey might have insight or answers to.
One of the biggest things we felt was that feeling of, are we alone in this and having a group of people who actually know we're part of the family of God, where there's people with many differences in children with differences and they're not alone.
Yeah there are serving takes, but I think the first thing I would say is how I have come to say the importance of knowing God and his promises to us through his word that just the fruits of that have been enormous. He's his word has just continued to be a life source for me. And I think that. Jesus is getting at when he calls us to abide in him, to live in him, it's to keep listening to his word and that's how we grow. That's how we keep walking in obedience to him and trust of him.
And I've just seen that. That's just as much true for mothering as for any other part of my life. Even just this last week, I've been reading the story of Mary and Martha and I don't always get it right. I can be trying to serve Jesus in my own strength as a mom and going about all the busy things of motherhood. But Jesus is calling us first and foremost to be listeners to him.
Jason's just wants me to keep reorienting myself to that, to sitting at his feet and listening. And when I've done that, that's given me this foundation of knowing God and that's helped me to know myself truly as a mom and as his child and to know my children well.
When I go to his word and I say, I'm a sinner. My children are sinners. We're saved by Christ and he's transforming us. That helps me to see well, really the first tasks of motherhood repentance and faith. And. Praying for God's work and my kids' hearts and all those things that God encourages us to do in his word.
It helps me to, put aside some of my own natural inclinations and ideas about what the most important things are. And especially his word has been so helpful when suffering has come. Rather than being completely thrown or disillusioned by suffering, his word has helped me to place our experience within the Bibles narrative.
I've just had this immense comfort from all the truths that God he's is with us and he's for us. In my suffering. He's not been abandoning me or punishing me. I can look back at before being a mom and see how important it was that I actually prepared for suffering in that time, by getting to know God well, and look at what the Bible has to say about suffering.
He's been bringing up those truths and those verses that I've looked at later in just really timely, powerful ways. And that's helped me to keep trusting him through all the ups and downs, all the unpredictable things. Another big thing that I've been learning would be my dependence on God for every breath, for every need that we have for every thing that my child needs. And that's been a way that God has refined my prayerfulness. I learned this as I was looking at our tiny baby in ICU. With tubes everywhere with monitors constantly beeping. And he was just struggling with all these basic functions and the alarms kept beeping and it just showed me my complete, inability to keep my baby alive myself I was completely, on my knees at the mercy of God and dependent on him and his work through our medical team to keep our baby alive.
I just saw how much I had previously taken for granted that every breath comes from him that every heartbeat is under his watch. That propelled me into prayer more than I'd ever prayed for before. I came to really appreciate those who were praying for us and the support they were giving us in our church family. And I just had this very strong sense of being upheld and covered in their press.
I was learning that God's hand was in. That he was with us. He gave me the ice to see his incredible Providence in the details of things and the way that they were timed and ordered.
We had a constant trail of Christian staff and neighbors around us in hospital , it showed me that God is just so compassionate in, in the little details of the story. And that's that in turn has helped me to notice in the Bible, how generous and compassionate is of God when he he comes next to people in their times of struggle.
That's something that my husband and I have ultimately been learning and taken away is that God is writing a very good story for his children. His story is better than the one that I would write. And sometimes he's his story turns my own story upside down. I might have, my own hopes and ambitions for my kids, but he has started me that I need to let them go for his better story.
And he stories bet up because he's his stories first and foremost about Jesus before. It's about us and our children are first firstly he's before they house. And that has really helped me to entrust my life and my children's lives to him. I'd say that's been my biggest learning. Yeah. So to go back a bit in time when we were expecting Noah. Two kids already a daughter age three and a son age one, and are expecting Noah number three. At our routine, 19 weeks scan, we learned that we were having another boy and we were really excited about that. But we also learnt that the pregnancy wasn't going to be as routine as our other two pregnancies .
We had a follow up scan after the 19 week one, because there were signs of a heart issue and the scan needed better imaging. That indicated that no one was going to need a heart operation around three to six months. And then we had a non-invasive test just to say, if he would have down syndrome I'll just say at this point, Dan syndromes also referred to. Trisomy 21. So if you hear me use that term or if you might hear other moms use that term, it's the same thing. It's the medical word for down syndrome. So there are a few complications later in the pregnancy and that kind of prompted me to have a C-section delivery at 37 weeks.
And that was to make his start as smooth as possible. And then we had wake hospital that went pretty well, but were, and we came home for a week, but he was not feeding well. And he had, he started to show that he was having quite significant breathing difficulties and we spent the next two months in hospital.
The months in hospital were very long and it was just, it's really a long, still intense time on the back of quite a journey through the pregnancy. And I was waiting for this time of relief and it was just this really busy, physically tiring time as I was recovering from the C-section. And then there was lots of caring to do, for him learning to breastfeed and bottle feed that, and that was all complicated by he was having trouble breathing
I was the third time mom, but it was like, I had L plates on I really had to learn how to care for Noah in a baby in the hospital context. I'd never done that before. And it was quite humbling I wasn't able to here to provide for him on my own. There was just lots of craziness coordinating parking and childminding and swapping over with Matt when he'd come into the hospital. And it was a bit of a revolving door constantly going in and out, and the kids had to put off with a lot while we did all that. being in ICU, I just encountered a whole lot of Benecol troubles and people with children who had burdens much heavier than we had to bear and carry. I think that showed me how much I had lacked insight and maybe even compassion for those people before.
it really challenged me to think about what it meant to walk with them at a cost to myself, and to be prayerful about all those medical needs. I had this real sense of purposefulness as I did look after him. There was lots of caring that I couldn't do. And that was something that I had to come to terms with that I'd had these strong image of a mother who could help her child flourish.
And I couldn't do that. I couldn't help him medically, I couldn't even nourish him completely as I had my other children and I wasn't able to breastfeed him as I'd like, I wasn't able even to help him bottle-feed successfully, and if any would get favors and I couldn't make them better, I couldn't fix his heart myself.
Yeah, I think I, I wanted to be confident about the decisions that I was making for him. And I couldn't even do that, but that he was going to have heart surgery at one month old. And, the operation that he was having was really intended for. Him when he was between three and six months of age. And so I was concerned, how can I make this decision for him that it's going to be safe? If there aren't many cases of a child, this young having his operation, but I just had to trust that to his surgeon and to God that God had given us the wisdom of the surgeon. And then that was the best thing I had to go with.
I have to say the day of Noah's heart surgery was probably the hardest day of my life. We had to wait. Most of the daylight hours, And I was just constantly praying that he would be okay. That was just, it was really exhausting. And then even when we got back to the hospital and there was this huge relief that the surgery had been successful.
Then there was just this ongoing time in ICU that took a bit longer than expected to recover and he seemed to have, some ongoing issues that might be life-threatening and then quite miraculously, Thursday disappeared. And that wasn't something that I had control over, but my mothering desire was just to fix things as quickly as I could for him.
I did feel a little bit sidelined in the first few months as a mum. And on the other hand that made me really pray and it helped me to trust the experience of his doctors and his nurses and just see this incredibly large village raising my child and thanking God for them.
That's a good question. I'd have to say, I don't want to talk about the hard stuff first, because I think my dominant experience in my heart was one of loss. I really love Noah. He was a precious gift from God and I believe that he was fearfully and wonderfully made by God.
I felt privileged to be his mum. I was thankful for another sibling for our kids and excited to see their growing relationship with him and our family formed together. So I did have this quite a normal experience of love. But then there were lots of other things going on as well.
More than I'd ever experienced before I had this very strong spiritual perspective and it's really profound piece and I didn't get to that point straight away. There'd been quite a journey through the pregnancy to get to that point. We were taking a back learning that there was going to be this large hole in his heart requiring open heart surgery.
I got from this place of feeling quite surprised and swamped to having this pace, even in the middle of that first heart appointment. I left with this deep pace that God was showing me that what mattered most was that Noah had a new spiritual heart and.
That his heart was healthy, sprinkled clean from sin. And that was because of Jesus's blood. I had this sense that whatever came from his physical heart condition, that God had this greater eternal reality in mind.
I could trust both his physical self and his spiritual self entirely to God God loved and cared for Noah more than I ever did. And that piece continue to stay with me through the pregnancy and through Noah's time in hospital. And so by the time Noah was born, Matt and I had already processed the surprise of his heart condition and his down syndrome.
It was like the shock element was taken out of it. And we were really freed up to keep focusing on caring for Noah we still needed to process the reality of his conditions, but it was like God had prepared us to do that with spiritual eyes. And with this abiding peace.
So there was something that was troubling me at that time. And that was more than anything that was specifically to do with no, I was actually my own scene.
I was quite emotional about it. And there was one moment where the nurses came in and I'd been sobbing. And I think they thought that maybe I was sad about Noah or that I'd had, the pregnancy blues . But the truth was that I'd been crying because my own seed I had this moment where I felt like I was the sinful woman before Jesus and I was washing his feet with my tears and my hair.
I was kneeling before now as I was doing this, I'd had these subtle ideas of shame associated with disability. I felt like they were being, the ideas of shame were being transferred onto me.
God was bringing me to a place where I could see my scene so clearly. And I just felt the shame of it so intensely. And he was showing me that I wasn't beyond any kind of suffering. I think I'd, I had felt that there were some hardships in life that, that maybe I was a bit beyond that he wouldn't make me enjoy it.
I think it was knowing his word that helped me to make sense of all of that and that what I needed to do was repent. That was the first thing. And that I had this confidence that the F his forgiveness was a short, so I wasn't sobbing without hope. I knew that he would forgive me, but as I was looking at Noah, I think the thing that really astounded me was that the reason that forgiveness was available to me was because he said, he's.
As a tiny fragile baby like Noah. I know it's just a powerful visual for me of that love that Jesus had entered into that brokenness. He become even more broken on the cross and it just made me treasure how much Jesus was a precious gift.
It strikes me time and time again. How. I could have easily wallowed in thoughts of how difficult this was or what God might be withholding from us, except that God has just kept sharpening my spiritual eyes as he has brought to mind the truth that I knew from his word already.
In the middle of my pregnancy God gave me this very strong picture in my mind. I was sitting on the edge of my bed having just received this phone call from the obstetrician. And I was trying to process what I've been told. And then I decided I'd lie back on my bed and just shut my eyes and talk to God about it and just give him. This burden. And it was like the curtains were being drawn back on heaven and he was showing me that the world and all the suffering and it will passing away that there wasn't going to be any down syndrome in heaven. It was just going to be this glorious world that come. God was drawing me to imagine what Noah would be like there. I hadn't decided to call him Noah at that point, but we did call him Noah. And he was making me think of what would know us everlasting nature be like he would have his redeemable. He would have a new mind. He would have his full identity being made in God's image and that no down syndrome could take that away or alter it.
And he brought to mind Paul's words in two Corinthians that the news I'd received was a light and momentary affliction. And it was preparing for us this eternal weight of glory beyond all comparison. And that this news was just part of the groaning of this world. It was waiting to be released into freedom and it wasn't worth comparing to the glory to come.
I later recall imagining being in our father's arms and him washing every tear away and revealing to us the glory and joy behind the teaks and that as his parents able to find fullness of joy in Noah, that he wasn't just our son, but God's son. Even while his life on earth seemed fragile and vulnerable this outlook from heaven, that was really clear that Hey, belong to God and that he was loved by God, more than I ever could, and that he was safe in his care.
Really helped me to appreciate that God had written a better story for him and for me, God just gave me this big picture of he's had it all sorted from the beginning.
He story was much more rich and full then AMEA diagnosis. I could have put my hope in the small possibility that the genetic results were wrong, but I actually had a better hope
That helped me to experience excitement to meet Noah. The spirit had ministered to me in my hard time, by helping me to recall his words and giving me certainty to hold onto when the future looked pretty uncertain and unknown later in hospital, I was reading the book of Romans and I wrote letters to Noah as a form of journaling. And that was a huge part of processing.
What had been happening for us it was like I was applying the scriptures to his journey as I journaled. I was making sense of what it meant to live in this broken world. I guess that's what it means for me to build my mothering on Jesus's words. Just like he calls us to be like the man who builds his house on the rock.
As I did this, the truth of his promise that the righteous won't be shaken because he was my rock,
I think God gave me the eyes to see, as I read his word through this time that he had provided for me in the most important way. And that was in his son. Jesus, whatever news or situation came, he was all that we needed to depend on. He was my rock, knowing that God was in control of the details when I felt helpless in so many ways was an extraordinary comfort. It's certainly challenged my parenting pride.
I'd had a narrative that kept creeping in of mothering self-sufficiency success and credit seeking, but God was instead leading me on a journey of increasing dependence on him as my heavenly father and on giving. Thanks to. It was like he kept drawing my eyes away from what I can accomplish as a mother in this world, to the next world.
And reminding me that any fruit that lasts for the next life can only be done through Jesus and through abiding in him, there is nothing, was nothing, will be nothing in my mothering hands that I can bring him.
So about the guilt for all my life disability had been either out there not me different, and I wanted to keep it that way. I'd absorbed worldly views that different, and we can mean lesser.
And I think I wanted to distance and protect myself from that awkwardness from pain, from perceived difference or in competency. And having Noah highlighted the conflict between my desire to follow Jesus has called to put ourselves as least in the kingdom and serve others as he did. It was a conflict between that.
And my heart's selfish concern that disability wouldn't serve me. It wouldn't advantage me except perhaps if I was seen by others to be kind or if big kind made me feel good. I kept longing to say who Noah was apart from his down syndrome. To see which parts were really him and which parts were the down syndrome
As I looked at Noah and I saw his brokenness, God was showing me my own brokenness. My old idols of image and achievement were just reemerging. I had this proud sense of self entitlement to a healthy baby. my assumption was that I was beyond particular kinds of suffering that I wasn't one of those people.
That disability wouldn't be in my lot or that I'd already had my fair share of hard things to do with, so I wouldn't have any more. I was incredibly moved by the reality that Jesus, who is the only one beyond suffering chose to enter into it.
I just kept learning that God's plans for my life and mothering a radically different to my own, but there are superior plan.
There are much better story and I need to continually tip my worldly ways of thinking my mothering ambitions and desires and preferences that don't fit with his ways. As that's happened, I've seen them, they just pile into insignificance as I find something better.
There's been this opportunity to show God's love to show his friend. There's that beautiful verse about his power is made perfect in weakness. That has been so true.
It's like he has set me away from that guilt and that shame narrative on these positive trajectory of expectations about what mothering Knoll would be like. And that's helped me to trust that he would be a blessing that he would teach and refine us. And that's, it really has been my experience. He has shaped us more in Christ-likeness.
Now I has been modeling to us, true faith real hope, and joy and love and thankfulness. By his witness, by his happy personality, his steadfast contentment and joy in God's good gifts, he energizes us with those things and encourages us in our faith with those things.
I think my encouragement is this, that as you look to God's word and you get to know how good and trustworthy God is, you can trust that he's purposes for hardship, or they're saying they are trustworthy and good and never in vain. I have been constantly learning that hardship is a perfect opportunity for his word to grow and strengthen us.
And you mum, who is going through a hard time, that it is the perfect opportunity for you to be learning dependent. For you to be perceiving God's sovereign hand holding and providing for you to have strengthened relations ships with other people, going through a similar thing, and for you to be surprised by answers to prayer and joys along the way.
And as you go through those hardships, I would encourage you to ask God to use his word, which is powerful and living and active to sharpen your spiritual binoculars to expand your heart's longing. And to show you that God can meet your family's needs in ways that we never can as mothers. As you look into his word, ask God to remind you of his provision for you in the details, the story of our lives and mothering that God writes is firstly, and finally about Jesus and that's glorious and it's worth trusting. No matter the hardships along the way,
I'm going to pray for us now using the words of one Peter heavenly father. We thank you that we pray to you as our God and father. And we thank you for the gift of motherhood, for the gift of our children. And most especially, we thank you for the gift of your son. Jesus. We praise you that in your great mercy, you gave us new birth into a living hope through the resurrection of Jesus from the dead.
We thank you that you are keeping for us in here. And inheritance that can never perish, spoil or fade, and that you are shielding us by your power until that salvation is finally revealed. Father, please help us to fix our eyes on these greatest spiritual realities on this biggest story, to rejoice in these things.
Even though now for a little while, we may have to suffer grief in all kinds of trials. Please help us as mothers trust that your purposes for these hardships are good, that you are refining our faith and proving its genuineness, and that this will result in praise in glory and honor, when Jesus is revealed, as we love and believe in.
Fill us with the inexpressible and glorious joy of receiving the end result of our faith, the salvation of our souls father. There are many things that we hope for in this life and for my, the hood, please help us to have alert minds, setting our hopes on the grace coming at Jesus's return, no longer conforming to evil desires for ourselves or for our children, but being holy in all that we do as you, our heavenly father, holy, please help us to love our children with a sincere, deep love from the heart.
Having been born again through your living and during word. And may we continue to crave it and grow up in our salvation. Now that we have tasted that you are. We pray this in Jesus' name. Amen.