Two conversations have been on repeat in my mind for weeks, like a song that won’t be forgotten. The first occurred 5 or 6 years ago between two acquaintances that didn’t know I was in the room. I don’t remember much, except that the subject of discussion was a mother who was raising a child with a genetic disorder. The mom was pregnant with another child, and the line that attached itself to my brain like a leech was this:
I don’t know why anyone in that position would allow themselves to get pregnant again!
The words burned like salt on an open wound to my heart. This heart that knows so well what it is to love a child whose been diagnosed with genetic disease. This heart that had my Aiden’s name picked out before his big sister was even born. This heart that holds the lives of ALL of her children as infinitely precious and forever worthy of space in this world—space not just to take up but to fill. And they do fill, to overflowing, all the hearts and moments and spaces that let them in.
It shouldn’t have to be said, but I will say it anyway. Every child is worthy of life and of love, and this truth cannot be torn down by the presence of disease or disability any more than it can by society elevating a mother’s “rights” over her voiceless child.
The worth of my child—and every child—is not grounded in her stage of life or the way she journeys through it but in the love and affirmation of a Father who knew her before she was conceived and will hold her securely throughout eternity with him.
The very words of the Living God shout her worth, and Aiden’s, and mine, and yours:
“Before I formed you in the womb I knew you …”—Jeremiah 1:5
It is His steady and familiar hand that gives me courage to write today, to make myself vulnerable yet again, and to continue moving forward in faith.
——
I know what Peroxisomal Biogenesis Disorder looks like. I am one of a handful of people on earth who’ve personally watched as it stole eyesight and hearing from my child, hindered her ability to reach developmental milestones, and raised liver enzymes to alarming levels.
I recognize the signs of this ugly disease, and I see its mark on my baby boy. The eyes that don’t focus. Feet that struggle to take a step. Ears that don’t turn to his name.
I hate saying that. Still, saying it is like unloading a heavy burden I’ve carried far too long, because to bring a thing into the light is to entrust it to the hands of the Redeemer.
For years I was terrified of walking this path with another child. Because it’s painful and it’s hard and it hurts. For so long my mind was locked up like a maximum security prison—no thought of another baby allowed within a mile of my carefully protected heart.
Until Jesus came and set me free. Without pretense or flair or explanation. He simply set my heart free, and I wasn’t afraid anymore. Then Aiden (my little AJ) came into this world and into my heart and our family. Life without his footprint is unimaginable. He is joy encapsulated.
A second conversation still plays in my mind, and this one happened a month ago between myself and a mentor that I love dearly and admire greatly. She asked me about the goodness of God and how I perceive it, given all that our family has been through. I’m not sure, but I think she was asking from a place of both experience and curiosity. Undoubtedly, she knows better than most what it is to trust in the goodness of God, though perhaps not from the context that Robert and I live in.
How do I relate to the goodness of God? The question is a significant one. I didn’t answer it well at the time but have spent a lot of time pondering it since.
From the time that I was a very little girl, I have been taught to know and love God for His goodness toward us. Upbringing is not enough.
In my 32 years on earth, very few Sundays have passed by that I was not in church, hearing and singing about God’s goodness. Church attendance is not enough.
I have read and studied the Word of God, which testifies to His goodness. Knowledge alone is not enough.
I have seen the evidence of God’s good work in my own life—His acts of mercy, healing, and blessing. But belief, if only in what God can do, is not enough.
I am so grateful for the wonderful example and testimony of my parents and others, for the blessing of getting to be part of a church family, for the opportunity to study the Bible, and for the many times that God has acted on my behalf. Yet in the most difficult moments of my life, these things alone couldn’t sustain me. I would’ve been buried under the weight of “How is this happening?” and “Why me?”
The reason my faith is intact and my hope is secure—the answer to how I still have peace and joy. It’s because I have known God. I have experienced his goodness for myself. Personally and intimately. Not only hearing and seeing, but actually tasting His goodness. In the laboratory and not just the classroom.
No human tragedy or demon of hell could convince me that God is not good, because I know Him to be good, and I know it to my core.
I’m certain of God’s goodness, and this allows me to put my faith in God Himself instead of in an outcome. I have believed that I would see Olivia healed, almost from the instant she was diagnosed. Now I believe the same for AJ. I have hope, and that has kept me moving forward. That hope is not fleeting but an anchor, and here is the reason:
I hope not in hope itself but in “the God of hope.” Not in a promise but that “He who promised is faithful (Romans 15:13, Hebrews 10:23).”
In “Experiencing the Presence of God,” A.W. Tozer wrote:
“If Christianity is reduced to a doctrine that can be explained with no intuitive knowledge, no direct knowledge of the heart of God, then where is the wonder of it? I would not give a dime to support a teaching that denied the presence of God in His universe and the fact that the human heart can know God through Jesus Christ.”
The book also quotes a hymn by John Henry Sammis:
Trust and obey, for there’s
no other way
To be happy in Jesus, but
to trust and obey
Tozer added:
“I believe that “trust” and “obey” are two wings of a bird. A wise old writer once wrote, ‘Two wings of a dove don’t weigh her down.’ She rises by means of them.”
I have seen the truth of this in my own life. There are only two reasons to obey: fear and love. Fearful obedience won’t last long. But obedience that is born of love and offered in trust brings lasting peace and joy.
My God is worthy of that kind of love. That depth of trust. That quality of obedience. To know Him is to realize this.
I want to know Him more.
*I wrote this post from my own perspective, using “I” instead of “we”, but the reality is that Robert and I have lived every step of this journey together. His faith is genuine, deep and sure, and he has been my rock (by pointing me to Jesus, my Rock) more times than I can count. The way that he loves our babies is just one reason why I love him so much. He would tell our story with different “flavor” but the same truth. We’ve also gained three wonderful children in the last few months through foster care, and I hope to find the words to write that story soon.
~Holly~
