For as long as my lungs have bled, I have wanted a doctor with enough wisdom to explain why my body continues to grow bad blood vessels and how to stop it from growing more.
On the other side of human limits we find hope in the infinite strength and wisdom of God. Where man’s abilities end we can find a new beginning — to trust “in the name of the Lord our God.”
Read MoreVascular Ehlers-Danlos Syndrome. Say that three times fast. It’s the name of the condition I carry deep in my genetic code. Maybe you carry the weight of a hard-to-say, even-harder-to-explain rare disease. Maybe your diagnosis isn’t even named yet and you’re in a frustrating cycle of doctors’ visits, tests, and endless waiting. With all of the appointments and daily management of our disease, we can easily let these identifications become our identity.
Our rare disease can take up a lot of our time, but it must not take preeminence in our hearts.
Read MoreIn The Scars That Have Shaped Me, Vaneetha Rendall Risner shares her story of life-long illness (Polio & Post-Polio Syndrome) and trials (death of a child and loss of her marriage) with simple writing and honesty.
Each chapter is written like a journal entry or blogpost making this book a quick read. It may be quick but it's also packed with great theology. With vulnerability, Vaneetha reminds herself and her reader of the unchanging character of God, even in the midst of illness and loss.
In her book, you’ll find many of the same themes I write about: lament, waiting, loneliness, acceptance and dependence on God, and the sustaining grace of His presence.
Read MoreLiving with an undiagnosed disease means living with uncertainty. It feels like being untethered. I have so many questions, yet I rarely get answers.
The same word, “anchor,” used for firmly securing a ship to land is also the same word for pointing a ship into the wind during a storm. The omniscient character of God has grounded me time and time again when medical knowledge has failed me. The sovereignty and faithfulness of God keep me focused forward, towards eternity when my body will be healthy and whole, no longer surprising us with unexplainable brokenness. God as my anchor is my only hope.
Read MoreTouch, and my need for it, has highlighted what I’ve known for years: As a person living with a rare and undiagnosed disease, I have a deep need to be understood.
Jesus is fully human and fully God. He is all-knowing, the only One who can understand the physical, mental, and emotional struggles you experience. And he is all-powerful, the only One who cannot be overwhelmed by your need.
The comfort is this: The One who wept at the death of his friend, weeps for your pain also. The same One who touched the leper, can touch you too. In your pain and need, you are understood, completely, by Jesus.
Read MoreI watched a gardening show once about planting trees. The gardener told us to remove the support stakes after one year. The tree needed to be tossed about by the wind without support because the tossing caused it to grow layers in the trunk. We need to let the wind toss the young tree about so that the tree could grow stronger. Perhaps, a crisis is a bit of resistance on a marriage, growing our marriage muscles and making us stronger. That’s certainly what happened in our marriage.
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