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Raising a Child with CMT - Diane's Story




Hello, I'm Diane. I never thought I would be a mom. I told God I wanted to be a professional jazz dancer. He let me be both. He also let me be a graphic designer, supervisor, records manager, consultant, business analyst, project manager, team leader and community volunteer. By far, my most rewarding and challenging job is being a mom.




First came Claire, my able bodied, child loving, charismatic, take on the world, pole vaulting, neuroscientist, oldest. Then came Erin, my disabled, loving, friend to the world, blogger and future talk show host, youngest. Erin is where this story will continue.




Daughter with CMT



Erin has Charcot Marie Tooth Disease, CMT, a neurological disease affecting the body’s muscle response and mobility. Raising Erin was no more challenging than raising Claire. It was just different. I believe God chose me to raise Erin because he knew I would be passionate in my love for her. He knew if I trusted Him, He would provide everything she needed to flourish in her life. He did. He always will.




God provides resources to me, as a parent, which profoundly and positively help Erin become her best self. CMT is painful. Sometimes Erin’s brain tells her feet to walk, and they don’t listen, so she falls. She gets hurt. Sometimes her body feels so fatigued she cannot get out of bed. She often has muscle cramps and has difficulty opening jars and holding a pen to write. When the pain becomes greater than her body can bear, she passes out. My job is to reduce her pain and her suffering through all the resources and love possible. I am her comforter, solutions coordinator and greatest advocate.



CMT Journey



I remember taking Erin to her first neurological exam as a three-month-old baby. She seemed to always sleep, turning her head to only one side. She needed a cranial helmet and physical therapy to stretch and activate her tiny muscles. As she began to walk, she walked on her tippy toes (a classic symptom of CMT) and had difficulty running and using her legs.



At age seven, I took her to her first EMG and genetic testing exam. She was diagnosed with CMT type 1A. She began going to physical therapy exercise sessions which helped her tremendously with strength and balance. Over the years she continued physical, occupational and aquatic therapy along with home programs to stretch and strengthen her body. Erin developed friendships to nurture her soul and a faith in God to lean on.




God is about possibilities and opportunities. His love for us is so deep he will provide anything to help us share that love and thrive. When Erin had difficulties, I would pray and look around me. God always provided resources to help in beautiful and unexpected ways.




When Erin had trouble riding a bike, I bought her a helmet and let her ride until it was too difficult. When she wanted a razor scooter like the neighbor kids, I bought her one to enjoy. When she wanted to be a gymnast I took her to gymnastic classes, then soccer, then dance. She sometimes fell, got injured, became bruised and defeated. Other days she shined. She wanted to do the things her friends did but couldn’t do them easily. It was important that she be given the chance to try. Later, I would dry her tears while listening to her frustrations then offer new ways to keep going. I talked with her about possibilities and a wonderful future.



Together, we saw countless doctors, occupational and physical therapists. At age 16, Erin had her first foot reconstruction surgery and a year later her second. She learned how to walk again, and how to dance again. She graduated high school with honors and today is earning top grades at college while leading several clubs and campus organizations. Erin will continue to flourish. Erin has learned to listen to her body when it tells her to exercise or to rest. She actively seeks solutions for herself and has made it her priority to help others.



Encouragement to Parents


My advice to anyone facing challenges is to first pray. I believe God loves you so much that He will provide anything you need. You just need to ask Him. Second, always ask questions and do not hesitate to ask others for help.Take the initiative. Follow your intuition. Use your resources. Find solutions. Lean on God and lean on others He places in your path. Let Him help you.




God provided me with creativity and amazing people all around to support Erin. He provided knowledgeable doctors, skilled physical and occupational therapists, resourceful guidance counselors, flexible teachers, an education system to encourage diversity and enable inclusion, a faith filled church and neighborhood filled with community support and friendship, peers who accept Erin, as she is, and an extended family sharing unconditional, unending love.





He connected us to others sharing the same neurological disease along with the goal to find a cure, at the CMTA. Reach out to this amazing team of dedicated professionals and awesome people. You will be glad you did.




Erin is having a great life. As for me, I will always be the best mom I can be.



Diane Black


Scripture to Encourage



"Cast all your anxiety on Him because He cares for you."

1 Peter 5:7



"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11



"Everything is possible for one who believes."

Mark 9:23



"The Sovereign Lord is my strength; He makes my feet like the feet of a deer; He enables me to tread on the heights."

Habakkuk 3:19



"I pray that out of his glorious riches he may strengthen you with power through his Spirit your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ,.."

Ephesians 3:16-18




Music


Evan Craft and Danny Gokey - Be Alright https://youtu.be/rMa1wUuUAb0


Lauren Daigle - You Say https://youtu.be/oZvKJl1kK8g


Cody Carnes - Run To The Father https://youtu.be/HcpeLDp0Foo




Resources

To read more of Erin's story check out her blog at: https://www.erinblack.net



Another great resource is the CMTA. This website can be helpful for families with a child or adult that have received a diagnosis. As well as information to explain it to friends and ways to get involved.

https://www.cmtausa.org/understanding-cmt/what-is-cmt







Diane lives in Ohio and enjoys taking care of the family’s home and summer cottage on Lake Erie. Her hobbies include cooking, entertaining, spending time with friends and spoiling her cairn terrier rescue, Ellie Bellie Black. She is active in her faith community and is a member of King’s Church Ohio. She loves her tropical aquariums, collects pottery and is a member of the Cowan Pottery Museum Associates. She is actively seeking employment in project coordination opportunities.



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