just two tiny genes: our journey of faith.
I cancelled our appointment with Medical Genetics at the Women’s Hospital today. I strongly felt like it wasn’t for me. I knew that they would be going over the details of the medical condition (which is only presenting as hypotonia ) and what further pregnancies would look like (in other words, they would advise we have an amniocentesis to determine if future children would also have the condition, and if so, then our options would be: abort the baby, which goes against everything I believe, which makes me feel sick, and at the same time completely overwhelmed that this option would be given to me—because I never thought I’d be here).
Yes it’s scary imagining going through this again. I have no idea what the future looks like for Florence. I have no idea if I will have 3 children that all have this genetic muscular condition, or no affected children.
I just don’t know. Those questions can rot holes through my heart if I let them.
This is why I choose to believe that this is the end of the condition in our family line. This is why I choose to surround myself with people who uphold my beliefs and seek to prove that Jesus did indeed come to earth to save us, to heal us, to redeem us. Often it seems we set out to prove why God hasn’t healed, and doctrines are built up around it to protect us. I don’t think Jesus sat around on the shores of Galilee preaching on this type of subject. So I just don’t delve into it. Why not this person? Why that person?
I am believing for full renewal and redemption of Flo’s body. All she needs are two tiny genes. All I need is to have one tiny gene disappear. All Jay needs is to have one tiny gene disappear. One or both of us, all of us, is what I pray for.
And yet…my raw human nature cries out when Florence is weak. Somedays she feels a bit like a rag doll, and I keep her strapped to my chest all day long, holding her as close to my heart as I can. And then, she’ll awake from a nap, looking as strong as ever, full of smiles, and I’ll feel free from that burden for a time. It’s a constant battle. I never ever want people to feel sorry for me, but I do need encouragement. Every. Single. Day.
The other day I was cleaning the kitchen furiously, feeling some sadness begin to creep it’s way into my heart. I wanted to give in so badly, to simply crumble under the weight of it. Sometimes that’s easiest way out. But, I’m learning that through my tears, I can praise Jesus. Instead of feeling sorry for myself or imagining Florence not being able to walk, and letting those temptations rule my emotions, I call on the name of Jesus. He’s my God. Somedays I feel overwhelming peace when I sing. Somedays all I can manage is a whispered “Papa. Mercy.”
But every time I call on His name, I am met wherever I am. He sings a thousand words over me that I can’t even comprehend. He pulls me into His embrace and settles into my bones, which feels like an enormous cloud of cotton balls filling my being. I can’t describe it, but Jesus is so close to the broken.
I’ve been listening to a lot of wonderful worship music lately. It’s a constant thing in my home. There are moments, days that demand continual overflow of song.
If you’re looking for some new, beautiful worship music check out Ben and Noelle: Sacred Songs and The Brilliance: Lent. Below I’ve added a live video of The Brilliance performing my favourite song, Your Love Remains. It is beautiful beyond words. I first listened to it when we received news of Flo’s diagnosis. I remember sitting there in the sunny living room, staring at the blue skies behind the gauzy white curtains, wanting to crawl into the deepest cave the world had to offer. And yet, this song was singing everything my head was screaming. It was just the right mix of hope and turmoil.
They are really fantastic and have been getting me through some dark patches. Ben and Noelle’s album is also beyond words.
I am thankful for those creative souls that sing to bring glory to Christ Jesus.