Posts tagged rare disease
DEVOTIONAL: Find Victory in God

it was tempting to put all my trust in the perinatologist. But with every new bleed, the lack of answers the doctors could give caused me to remain cautious and keep my trust in check. 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.

Compassion goes a long way in helping a suffering person endure the unimaginable. I appreciated his compassion so much, but what I wanted more was answers.

Without answers from the wisest physicians, we decided to trust God with my physical life. That was the moment I stopped hoping in the wisdom of doctors for my deliverance from future bleeds.

Psalm 20:7 finishes boldly, “Our boast is in Yahweh our God, who makes us strong and gives us victory!” The name of the Lord our God is Yahweh, I AM (Exodus 3:14). His very name is the foundation of our faith. 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.”

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DEVOTIONAL: Finding Identity in Christ

Vascular 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.

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Who is Disabled? The Paralympics and the Question of Identity

A highlight reel showed one athlete running with a prosthetic leg, one swimming with only one arm, and one crossing the finish line tethered to her Guide. I knew immediately, I was watching the Paralympics taking place in Tokyo.

As I watched, curiosity struck: Were these Paralympians born with their disability? Did they start their journey as healthy Olympians only to endure a horrific injury, be relabeled “Disabled” and shunted over to the Paralympics? What qualified them to compete in the Paralympics? With all that they had to overcome, what inspired them to race for gold?

Then, a startling question derailed me. Would I be a Paralympian? Am I disabled?

Who defines disabled? And who defines our identity?

Love is the tool by which God shapes your identity. Lock eyes with his loving gaze. You are his beloved.

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Book Review: The Scars that have Shaped Me

In The Scars That Have Shaped Me, Vaneetha Rendall Risner shares the spiritual journey represented by her scars. She 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. While my own scars and suffering are different, I found I could relate to something in every chapter which is a testimony to the presence of the same God with both of us.

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.

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How Jesus Meets Your Need for Touch

Touch, and my need for it, has only 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 lived a life full of human experiences. Yet, he is also fully God, existing outside of time, seeing our lives develop from within the womb to our present day. He is all-knowing, the only One who can understand the physical, mental and emotional struggles you and I experience. And he is all-powerful, the only One who cannot be weakened or overwhelmed by our human struggles.

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 in your need, you are understood, completely, by Jesus.

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Forever and Ever, Amen: How Chronic Illness Affects Marriage

Medical crises or any trauma for that matter, do take their toll on a marriage. It is my belief, that those crisis either strengthen a marriage or weaken one. And perhaps that’s the point. God wants a husband and wife to be woven so tightly together that they become stronger together than they are separately. (Ecclesiates 4:9)

I 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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