Posts Tagged ‘hypotonia’

By Stephanie Kim. Photo by Susan Brown.

calloutI remember the early years after my now 8-year-old daughter Julia was discovered to have delays. There were numerous visits to specialists and a lot of testing, which resulted in no firm diagnosis, no named syndrome, just that she’s missing part of her eighth chromosome and part is duplicated. I obsessed for a while searching the Internet for every article and website that had anything to do with genetics and all of her maladies – intellectual disability, atrial septal defect, hypotonia, spinal issues, intestinal malrotation at birth. But I started realizing all this research was causing me much fear and anxiety. What other problems might there be? What will she be able to do? What will she NOT be able to do? Am I doing all that I should be?

family photoOver the past few years, I have discovered that my best resource for life as a special-needs parent really is the Bible. I have re-written Psalm 139:13-17 in my Bible with Julia’s name: “You made all the delicate, inner parts of Julia’s body and knit her together in my womb. Thank you for making her so wonderfully complex! Your workmanship is marvelous – how well I know it. You watched Julia as she was being formed in utter seclusion, as she was woven together in the dark of my womb. You saw Julia before she was born. Every day of her life was recorded in Your book. Every moment was laid out before a single day had passed. How precious are Your thoughts about Julia, O God. They cannot be numbered!”

From reading the Bible, I realize that my two daughters belong to God. He has entrusted me to care for them for whatever amount of time He gives me to do so. But ultimately, they are His. He is in control. God knows every malady Julia has and will have; He knows the ones that I don’t even know about yet. I often have to remind myself that God doesn’t make mistakes.

A friend told me about his sister who has a child with delays and how she has worried every day of her daughter’s life whether she would ever walk, talk, read, do math, drive, etc. I did the same for several years, but hearing about her lifelong worries made me decide that I didn’t want to live my life that way – always worrying, wondering, fearing. It all comes down to faith and trust in God. Do I really trust that He has a plan for Julia and that it is good, that He will take care of His children, that she will be able to do the things He has prepared for her, even if I don’t know what those are yet?

Julia still can’t count or recognize any letters, and she still has difficulty expressing her desires and frustrations. But she has taught me to enjoy each moment with her; to celebrate every little success, no matter how small; to slow down and take notice of each of God’s blessings; to have patience like I have never known; to be thankful in all circumstances; to be as joyful and loving as she is; to have the kind of childlike faith she has.

We still have our bad days with uncontrollable screaming fits, inexplicable behaviors like throwing off her shoes, and endless visits to specialists. It is on those difficult days that I am reminded I don’t have the strength to do this on my own and that I must rely on God to help me. I still catch myself wondering if Julia will ever read or be able to live independently, questioning if I’m doing enough for her. I do occasionally research the latest genetic findings, but now it is with faith and without fear. It is because of Julia that my faith has strengthened, and I am now living the abundant life.

I am truly blessed to be chosen by God to be the mother of a child with special needs.

Editor’s note: This article first appeared in the Richmond Times Dispatch April 28, 2012.

Stephanie KimStephanie Kim is Director of Finance for the Tobacco Indemnification and Community Revitalization Commission. She is an active member of Richmond’s First Baptist Church and often participates in worship services as flutist. She resides in Mechanicsville. She can be reached at flute2tr@comcast.net.

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