Today, it’s my pleasure to introduce Melissa Gamble, a new guest blogger at DifferentDream.com. (To see a picture of Melissa and her family and read her bio, go to the guest blogger page and scroll down.) In her post today, Melissa shares how the gradual diagnosis of her child’s special needs and the implications of them changed her relationship to God.
A Journey to Special Needs Acceptance: Accepting God’s Plan
In their hearts humans plan their course, but the LORD establishes their steps.”
Proverbs 16:9
I had my life totally planned out. I went to college, graduated early with honors with a degree in education, married my high school sweetheart, and started teaching 3rd and 4th grade. Then my husband and I decided to start a family. By the time I got pregnant, we’d been married almost 6 years and knew we were ready to raise a child. I did not have a good pregnancy, dealt with every complication imaginable, and ended up giving birth to our sweet daughter, Ginny, via c-section at 36 weeks in August of 2008.
A Taste of Special Needs
Ginny struggled with feeding problems as a newborn and didn’t hit developmental milestones as an infant. At five months old, she was diagnosed with plagiocephaly (misshapen head) and torticollis (weak neck muscles). Ginny wore a helmet from six to nine months of age to correct the plagiocephaly and torticollis. I remember making the comment during that time that I was getting just a taste of what parents with children with special needs must go through every day. After the helmet came off, I thought everything was going to get better and Ginny would gain more skills (which to me meant catching up with her peers).
A Special Needs Diagnosis
At one year, Ginny was diagnosed with a severe hearing loss. She had passed her newborn hearing screening, so this was a bit of a shock. After receiving the diagnosis of the hearing loss we started to suspect that something more serious was going on. Ginny was a medical mystery to her pediatrician and other specialists. In May of 2010 we received a diagnosis of Peroxisome Biogenesis Disorder (PBD) a very rare, genetic, progressive, and ultimately terminal condition which finally explained all of her miscellaneous medical issues. For me as a “planner” receiving this diagnosis was life-changing. It was as if God had tapped me on the shoulder and said, “Uh hello there Melissa, I’m making the plans here- not you. When are you going to figure that out?”
Life with Special Needs
With Ginny’s diagnosis, my plans for having a “normal” life with a typically developing child vanished. Right now my life consists of caring for a very sweet, but very demanding three-year-old. Ginny attends weekly physical, occupational, and speech therapy. We also take her to swim twice a week and she attends a special needs preschool class on Tuesday and Thursday. I spend my time while Ginny is at school taking care of our home, exercising, and working as the co-founder and treasurer of the Global Foundation for Peroxisomal Disorders (GFPD) – the foundation dedicated to funding research and supporting families affected by this rare disorder.
A Special Needs Path
Even though she is the happiest little girl ever, I wish every day that I could take away Ginny’s challenges and struggles. While my life has not turned out as I planned it, my goal is to live each day to the fullest, to treasure each moment that I have my sweet daughter, and allow the Lord to establish my steps.
Share Your Special Needs Acceptance Story
Can you identify with Melissa’s gradual acceptance of God’s change of plans? How did you come to treasure what God has given you instead of clinging to your plans? When is that hardest for you? Leave a comment!
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Rachel, isn’t it amazing how God works? One thing I’ve learned is that we can trust God’s journey over our own. You are wise to cling to him.
Jolene
Rachel, isn’t it amazing how God works? One thing I’ve learned is that we can trust God’s journey over our own. You are wise to cling to him.
Jolene
I can very much identify with gradually accepting God’s change of plans for my life! My husband and I were planning to be missionaries and preparing in every way to do so. Through the premature birth of our daughter and her visual impairment which resulted (as well as some other ongoing special needs) God clearly closed that door. For me it gets hard when I start to think about all the “what if’s” but I know if I trust in Him “He will direct my path” (Prov. 3:5) Both my husband and I cling to the promise that God’s plans are better than our own and are humbled by the fact He has seen fit to entrust our daughter to our care.
I can very much identify with gradually accepting God’s change of plans for my life! My husband and I were planning to be missionaries and preparing in every way to do so. Through the premature birth of our daughter and her visual impairment which resulted (as well as some other ongoing special needs) God clearly closed that door. For me it gets hard when I start to think about all the “what if’s” but I know if I trust in Him “He will direct my path” (Prov. 3:5) Both my husband and I cling to the promise that God’s plans are better than our own and are humbled by the fact He has seen fit to entrust our daughter to our care.