Our daughter started out as a late walker, but a really early talker. As parents, we knew that the recommended guidelines of child development really meant that every child was on their own timeline. We were not worried. Yet, there was a little alarm going off in the back of my brain – Fifteen months is the cut-off for typical age to begin walking. She was 15 months. Now what? I shared my concern with her pediatrician at her fifteen month check-up. Thankfully, her doctor was a mom herself and decided that a quick x-ray would be able to ease my momma worry. The x-ray was normal. Now what? My heart was relieved, but the nagging alarm in my brain did not stop. Her doctor believed in mother’s intuition, and promptly referred us to an orthopedic specialist. Little did I know that this appointment would change my life forever.
As I walked into the appointment with the orthopedic specialist, I was relieved that my daughter had started walking the week before!! I now was content that everything must be fine. The alarm in my head was silenced. I confidently let my daughter run into the small, corner room of the office when our name was called. The doctor watched her run excitedly through the large office area, giggling and holding onto her baby blanket that she always held in her right hand. Her bubbly personality and clear speech made it difficult for me to think that there was anything out of the norm with my daughter. Yet, as the doctor watched her intently, analyzing her arms, legs, feet, and head movements, he promptly raised his head to make eye contact with me. “Your daughter has spastic hemiplegia cerebral palsy,” he stated very calmly and confidently. The look on my face must have spoken volumes – What? What are you talking about? She is running. She is talking fluently and articulately. There is nothing wrong with my precious little one! I am not even sure I spoke any words; yet, my face said it all. He continued, “Your daughter has a condition that is caused by brain damage before, during, or after birth. Cerebral palsy causes motor delays and can affect different parts of the body. Your daughter’s entire right side is affected. Watch how she holds her right arm tightly against her body as she runs. Notice that her right leg drags a bit behind as she looks back – always looking to the left. I watched my angel run circles around the nurses’ station while clenching her baby blanket with her right arm. The doctor was correct – she did keep her right arm tight against her body; her right leg dragged a bit; she never looked to the right, only to the left.
What did this mean for our daughter? Would she continue to grow and develop normally? Would she need medical procedures – surgeries, braces, etc? Would she be able to keep up with her peers? Would she be able to work as an adult? My brain was flooded with questions, some important and some not so important. Each question that came to mind made me think of more questions. I did not know what to say or ask. I left the office holding back tears; feeling overwhelmed and scared.
That was nearly sixteen years ago. Most, but not all of those questions running through my head that day have now been answered. Over the years, my husband and I have heard many diagnoses regarding all five of our children. Some were easier than others to hear. Some we had to discover on our own because the medical community could not figure things out. God has taught me a few lessons on how to deal with a diagnosis and how to move forward:
1. Take time to grieve. It is ok. It is good. Cry. Punch the pillow. Talk to your spouse, your friends. Give them the opportunity to serve you with their comfort and love.
2. Become the advocate your child needs. Research. Talk to other parents with children who have the same diagnosis. Never under-estimate the power of the “momma-gut” when working with doctors and therapists.
3. Help your child have a wonderfully normal childhood. A childhood should be complete with family and friend get-togethers, extra-curricular activities that your child is passionate about, and time to just play.
4. Remember the siblings. They will need to be loved and nurtured in a way that is reflective of the important role they play.
5. Different is ok. Your reality is going to be different than what you imagined parenthood to be. Your child’s path to adulthood is going to be different than that of their peers. Different is ok. What God ordains is always good. No, I do not mean that he “made” my child disabled and that it is good. However, He used the effects and realities of the sinful world to bless my child and myself (along with a whole host of others who have been blessed to know her). Our daughter has learned compassion and empathy towards others. She has learned to use her gifts and talents in unique ways with her physical challenges. As parents, we have learned so much about how wonderfully God created our bodies, how God uses our weaknesses and our challenges in life to bring us into a closer walk with Him. What God ordains is always good!
Brenda Wagenknecht is a Special Education Consultant who works with families, teachers, and private schools to help put plans in place for children with special needs, including brain connecting activities (a HANDLE program). She has Master’s Certifications in Severe and Multiple Disabilities, Cross-Catagorical Disabilities, Coaching and Mentoring, and Neurodevelopmental Learning. She is a foster and adoptive mom to 5 with 4 grandchildren. She has homeschooled for 15 yrs.