Where do I start? What is it all about?
As moms, so much of our lives are not profound or cleanly laid out like the smooth keys on a piano, making sweet music...even if we could explain a metaphor with those black and white keys. My life is more like a flower bed. It’s beautiful with lots of life and activity. It’s super dirty. There are different plants in all different stages of development and some that I didn’t put there at all, like seedlings from a nearby tree, or weeds that I actually kind of like now. There are perennials that are healthy and established and some that look shriveled and sad. There are newly planted annuals that hold many buds and the promise of vibrant color and new life, but I’m still waiting to see what actually develops. And then there are the dead patches. For some reason the seeds I planted there never came up, despite my best efforts.
These areas, as I look at them through the metaphor of the garden of my heart, bring up muddy ‘Why?’ questions. They feel so incomplete and unresolved. They niggle at me with that shaming, weight of guilt. The perfectionist in me feeds that niggle, adds dirty pots and pans and great baskets of unfolded laundry to that weight, not to mention those important things you didn’t do, you should have done and meant to do to love your family and care for the delicate souls of your precious children. The “important things” not done are the worst! They are the heaviest, the achiest burden to bare.
But sometimes 'Why' isn’t the most helpful question to ask.
Jesus is not offended by it. Not at all. But as I’m looking back through my journey so far, with my son Hartman, the Why doesn’t seem as important compared to, ‘What do you see Jesus? What is at work here that I can’t see?’ Jesus is the greatest gardener of your flower bed. He is gentle and attentive and has a far bigger picture of the seasons and the process then you ever will!
My dream, in telling my story, is that you will relate to my struggle.
You struggle too and sometimes it helps to see someone else’s story and Jesus in the details of their life can help to highlight Him in your own. I desire for the mystery, the beauty of Jesus, to be seen in the details, in the mundane everyday activities. Like the men who walked with Jesus along the road to Emmaus and didn’t know it. In hindsight they said, “Didn’t our hearts burn within us as He taught us about the scriptures?”
I looked up the name Emmaus, sure that it would mean something deep and profound but it’s simply the name of a town, a small village that two Jewish men traveled to one day. It’s not about the location, the goal or destination. There are an infinite number of places God is taking us to and things that He’s doing in our lives. It’s so much more about the journey and the ones that we’re journeying with.
May the Lord burn in your heart as you engage Him, hidden as He may be, along your road to Emmaus.
Hartman is our 4th born child. We discovered that I was with child during a sad season. My mother was staying with us, following the passing of my dear dad, who died very suddenly from cancer, six months earlier, so the news of the coming of a new life was a great source of joy for Mum and all of us.
We went to have our 20 week ultrasound and decided to bring our other 3 children because…you know…it would be so fun for them to see the new baby, right?! Wrong! It was a chaotic, disastrous, nightmare! They were climbing on everything and pressing buttons, fighting over toys and crying.
We actually have no record from that ultrasound because my 3-year-old unplugged the machine.
I was irritated and wanted to get out of there as quickly as possible but the lady was taking FOREVER. “Seriously…what are you doing?” (I’m sure that wasn't what I actually said but it was definitely my tone.) She hesitated for a moment. She started to say something and then stopped. She said, “I’m just looking at the heart…” We waited. She was very careful with her words. “I’m not sure what I’m seeing…I’m going to need to refer you to a specialist…. it looks like his heart is beating backwards.”
My mood changed. I sat quietly. I could feel my own heart-rate rise and the color drain out of my face.
The following weeks were like a slow, painful jog. Living with the unknown was agonizing. I had no idea what was wrong with my baby. Was he going to be OK? Was he going to die? Would he be born with chronic illness or special needs? Would we be able to afford his care? We looked into getting a echocardiogram (specialist ultrasound) and it was going to cost $6,000 if we were self-pay. Would we have to move back to Australia just because of health care? What was my life going to look like?
I felt a heavy weight in the pit of my stomach all the time. I found it hard to take a deep breath; I couldn’t sleep and would wake up with my heart racing.
At the time we had made plans to go to England for a family wedding. It was the first time we’d traveled with 3 children under 5 and I wasn’t sure if I was up to the task. When I mentioned it to our sonographer she told us about a Doctor in London who was the world’s leading ‘Fetal Cardiologist” He was pioneering the study of the heart among unborn babies. My father-in-law, who is a total super hero, picked up the phone and called his office. (To do this would never occur to someone like me). He explained the situation and that we were in town for a couple of weeks. He offered to pay the extra expense for an special appointment and sure enough they got us in.
On day three of our being in England, we got up early and caught the train to London. Dr Simpson took a long time looking at our sweet unborn baby and then proceeded to very kindly and comprehensively explain everything we needed to know. Our baby had Pulmonary Atresia, which means that the primary artery that brings oxygenated blood from his lungs to his heart was blocked, for some unknown reason, (not genetic or having any direct cause), which only happens to 1 baby in 10,000.
It was still early in our baby’s development so there were a few possible scenarios and he explained several potential routes of treatment and what we could expect his life to be like. The good news was that he was perfectly safe in my womb. He would grow to be full term and develop normally in every other way. This new information gave me vision and hope. There were still unknowns but having even some understanding was like fresh, clean water refreshing my tired and anxious heart.
Back in the US, armed with this new knowledge, we moved forward pursuing his care, learning about his condition, where I would deliver, figuring out insurance and financial assistance. We got connected with Children’s Mercy Hospital and I began having ultrasounds and non-stress test twice a week. We had several consultations, sometimes with 10 specialists in the room. They outlined their proposed plan to correct the disfunction but carefully explained that he would essentially live with half a heart, limiting his capacity and giving him a disposition towards all sorts of other problems.
This was hard news to swallow. I felt pretty numb during these meetings, not sure how to take in what was being said. It’s in these situations that I’m so grateful for my James, who is so intuitive and intelligent, and has little concern for peoples opinions. He led me so well and would ask such great questions.
They also used the phrase ‘High risk of sudden death’ in relation to all of our baby's complicated heart functions and disruptions. This was the hardest thing for me to wrap my head around.
How do you love a child with your whole heart while still guarding your heart, knowing that you might literally loose them at any moment?
The answer is you just can’t. There were many tearful conversations with the Lord, prayer times and conversations with dear friends as I wrestled with this. Ultimately, I found myself in surrender to the Lord. It was the only place I could stand and walk without becoming hard with either bitterness or fear. I chose to trust Jesus, that He was good, and that He was going to take care of me and my baby, no matter how long and hard the road ahead appeared.
Hartman Judah Baldwin was born at 3pm on December 17, 2013. I was induced on my due date so he was full term. This was my first hospital delivery and I was in a facility that is set up only for high risk deliveries so I had all the bells and whistles… my own nurse and Doctor checking on me and a team in place ready to care for Hartman. I had never heard of a perinatologist or a neonatologist before but we were all friends now. Hartman was a robust 8Ib 14oz baby and looked beautiful and perfect in every way. It was hard to believe anything could possibly be wrong with him. We held him as every new mother and father does, brimming with joy and pride. Feeling his soft skin against mine I could almost forget all that was going on around me.
I loved him instantly. He was my boy and no matter what, I would love him forever.
It’s important that I explain the meaning and purpose behind his name. No, we did NOT name him after his defect! That would just be dumb! James and I put a great deal of thought into the naming of our babies and with each one we prayed and asked the Lord for an idea of this child’s character and their calling. So, with this unique child, knowing that his life would be marked with many challenges, we felt the Lord speak that he would be strong and brave. That is what his name means. Our prayer for him is that he would be a man of courage, someone who walks with inner strength and resolve, a person with ‘heart’!
Our hope is that he would only be known by his medical complications for a short section of his childhood and then, as a young man and an adult, he would be known as a man who has character. So that’s what we speak over him every day when we say his name, Hartman. It’s a prophetic declaration, a statement into his spirit, and an announcement to eternity that this child is strong and brave; marked for the purposes of God.
End of Part One