The Challenge When God Doesn’t Heal

One of my Facebook friends who shares the myotonic dystrophy connection asked me if I could help her with some questions. I was excited to converse. With a rare and silent disease in the family, it’s important to find others in similar situations so we don’t feel alone. When we have loved ones we pray for all our lives that die with the same disease they had all those years ago when we started praying, it can be hard to grapple with. I want to share a conversation with you between two grown women who both lost a parent to muscular dystrophy. Feel free to friend me on Facebook – just click my name anywhere in the conversation.

  • Here is an article I published with Quest MD about my family.

    Quest is a magazine for muscular dystrophy. Quest is a great place to start for knoweldge.

  • Jeff Leeth

    8:44am

    Ericka

    I think my 39 year old sister isn’t going to make it much longer, she is 80 pounds, too many medical problems to count, she’s so strong, but she doesn’t think right. . Doesn’t take good care of herself

    Cant work, no one will help her, she looks bad, i think people assume shes on drugs, crack

  • Darcy Leech

    8:45am

    Darcy Leech

    Once the disease starts to affect an adult’s ability to expel enough CO2 and pull in enough oxygen there are some mental detriments.

    Sleeping gets harder and not as restful, and that can make people seem pretty out of it when they are waking up or tired.

  • Jeff Leeth

    8:49am

    Ericka

    Our dad as well as my sister have to sleep propped up. . They choke on their own saliva.. he went to bed and just didn’t wake up. .

    She’s so tired yet she takes care of everyone. . She has an awful bf, he says she’s not sick. .. he’s an alcoholic but she status, 2 kids of her own, my nephew has signs of mmd, he’s 12.. i was adopted by my 2 sisters father, but their uncles, and cousins have been ravaged by this

    Darcy Leech

    8:53am

    Darcy Leech

    Yea, my mom went to the hospital for the final time after she was unresponsive from a nap.

    *she sent me a picture of her and her sister who is affected with the disease*

    There is a lot of love in that picture!

    Her muscles do look like they are atrophying though…

  • Jeff Leeth

    8:54am

    Ericka

    She’s very sick

  • Darcy Leech

    8:55am

    Darcy Leech

    Are the children connected to good doctors? If she is that affected in her 30s, the boy will likely be affected worse and younger. Myotonic dystrophy has genetic anticipation and hits each generation worse for those affected.

  • Darcy Leech

    8:56am

    Darcy Leech

    You know, as my mother lost abilities, I think she kept the worst of it quiet. Not because she was embarrassed necessarily, but there was nothing she thought could be done about it. What could have been done though was that with awareness, those around her could have been more compassionate and understanding.

  • Jeff Leeth

    8:56am

    Ericka

    Lot of love, i wish love was enough to save her… people don’t live with this disease into old age. .. very hard to find food md doctors here. My sister is constantly educating them

  • Darcy Leech

    8:57am

    Darcy Leech

    Yea, the doctors will get it wrong at times…

  • Jeff Leeth

    8:58am

    Ericka

    I am compassionate, but i can do better. .. i want her to leave her oppressive boyfriend and come live with me. . She hides alot from us she says to protect us 😦

  • Darcy Leech

    9:00am

    Darcy Leech

    I can’t imagine what she would feel and fear at this point. It has to be hard to make decisions knowing what comes later.

    Be patient with her. That’s what I wish I did more with my mother.

    Life is lived differently with a terminal disease…

  • Jeff Leeth

    9:04am

    Ericka

    I know she’s scared. .. our dad came back into our lives a few years before he died. She had waited to be reunited forever, and when he came back, she had a bond with him, because they were at the same stages in the disease.. now she feels alone again. . Our sister ***still hasn’t gone to get tested, and she had 3 young girls. . I can bit lose my sisters

  • Darcy Leech

    9:06am

    Darcy Leech

    April may have good odds of being clear. Passing from father to daughter is somewhat rarer. It’s scary to think about the disease in a family though… it passes on until the most affected generation can’t reproduce to spread it. That is why we need a cure.

  • Jeff Leeth

    9:07am

    Ericka

    I saw through your page, they have some breakthroughs

    I hate this disease

  • Darcy Leech

    9:11am

    Darcy Leech

    Yea, it’s a terrible disease to suffer with.

  • If I blocked off all the names and identifiable information, would you mind if I blogged about our connection? I want others to know they can reach out to talk.

  • Jeff Leeth

    9:18am

    Ericka

    Absolutely, i felt comfortable reaching out because of your conversations with Emily.. i felt it was a sign, and a blessing

  • Darcy Leech

    9:20am

    Darcy Leech

    🙂

    Thank you!

  • Jeff Leeth

    9:21am

    Ericka

    Thank you Darcy, im reading your blog now

  • Jeff Leeth

    9:54am

    Ericka

    Im just so mad … she doesn’t deserve this. . I want God to heal her… He can do anything

  • Darcy Leech

    9:55am

    Darcy Leech

    That was one of my biggest struggles – why God didn’t act miraculously to change her DNA and save my mother.

    “My strength is made perfect in weakness.” That verse both comforts and haunts me in thinking of God’s plan in the world…

    Some of us are meant to die young and some of us are meant to weaken. For you and me, this might seem all the more unfair with our healthy genetics.

  • Jeff Leeth

    10:05am

    Ericka

    Well, i just feel like if i had a child who i could heal, i would, no doubt in my mind.. i have diabetes, and im dependent on insulin, and my tiny mind, I guess, is not capable of understanding how a father can let a child suffer from a disease they did nothing to get. . No bad decisions were made

  • Darcy Leech

    10:20am

    Darcy Leech

    It is hard to swallow the concept of a loving God letting His children suffer. The challenge is to search for the purpose in being challenged, in being in pain, and in death. I don’t have all the answers for those, but I know I’m better because I haven’t had a pain free easy life.

  • Jeff Leeth

    10:21am

    Ericka

    Thank you for listening and your time. . I really appreciate it Darcy

  • Darcy Leech

    10:22am

    Darcy Leech

    God has a purpose in this. This has been my favorite verse set since I was about 12 – 1 Corinthians 13:8-13 New International Version (NIV)

    8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

    13 And now these three remain: faith, hope and love. But the greatest of these is love.

  • Darcy Leech

    10:23am

    Darcy Leech

    God will always love us, but what we know on earth is temporary, even our strength. We can’t understand God’s plan fully here, and there are some head scratching parts to it like terminal disease. But one day, when we leave our earthly bodies and live in heaven, then we will understand why. We only see through our eyes now, and the world doesn’t make sense. But one day, when we dance in heaven with our loved ones who could no longer dance on earth, then we will know why God did this.

  • Darcy Leech

    10:24am

    Darcy Leech

    And in the meantime… we have love. Love that we can give, and love that we can receive. It is our greatest gift either way. It’s what gets us through it.

    God bless you and your family in your search for peace. It isn’t easy, it isn’t fair, and there are times it is hard to see the point. But the point is there, and we are loved – and we can share our love.

  • Jeff Leeth

    10:25am

    Ericka

    GOD BLESS YOU AND YOUR FAMILY TOO DARCY.. THANK YOU

  • Darcy Leech

    10:26am

    Darcy Leech

    You’re welcome. I’d be happy to talk anytime.

    mom headstoneMy mother’s headstone is less than 10 yards away from my brother’s. I lost them both, by the time I was 26, to the same incurable disease present in their genetics from birth. It might seem easy to curse an uncaring God or doubt that one even exists after losing your family to something in them regardless to choices or willpower. My mother’s faith kept me from that though. You’ll enjoy reading about her full story in From My Mother when it releases in April!

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