In August’s issue of My Journey of Faith, my dear friend Heather shared the story of her daughter and how her family is adjusting to the “new normal” of having a child with a disability. I have had the honor of praying with, listening to, and learning from this amazing mother, and God has shown me his mercy, love and grace through her life. This story is only the beginning and I am so overjoyed she chose to share it with us. – Carissa Hardage, Editor
For the August issue of “My Journey of Faith” magazine, I was asked to consider writing about “new beginnings” in my life. Most specifically, I was asked to write about the last year I have spent adjusting to my unexpected new beginning of life with a child that has a disability. It has been a season of ultimate heartache and deep sorrow, but Our God has been very close and His hand has provided everything we have needed. Surprisingly, we have even found great joy in His comfort. How could I pass up an opportunity to tell you of our God’s faithfulness? It is ONLY for His glory that I share our unplanned, new beginning.
You see, when I think of new beginnings I think of fresh starts. Uplifting and positive stories. Stories of how some “choice” someone has made, puts them in a position that society would say is better than where they started. I would say that I have had six “new beginnings,” in my life so far. My first new beginning occurred when I was six and gave my life to Jesus. My best friend had died, and I knew that she was in Heaven and I, too, wanted to have that eternal security. Blessed assurance was mine when I asked God to forgive me of my sins, and a deepening relationship with Our Almighty started right then. That part of my journey transitioned to finishing high school and beginning college. That was the beginning of my second journey in life. Such a great season and rite of passage. It wasn’t long after that, I married my best friend and high school sweetheart. We began our journey together, my third journey. Several years later, we decided we were ready to begin our family and with the birth of each our children, NEW LIFE began! What a wonderful and exciting part of our journey. We were blessed with two beautiful, healthy boys first. When our oldest was six, our middle son was three, we welcomed home our precious little girl. Her gender was a surprise until birth, and we were tickled PINK to have a little girl! For six months we believed our Lydia was healthy and 100 percent perfect. She was born right on time, she was a great size and more beautiful to us that any other little girl in the world. Our entire family fell head over heels with her from the instant she arrived.
By about six months of age most babies have excellent head control, begin to sit up, roll over frequently, and maybe do some reaching…Lydia wasn’t doing anything of those things. We were given some very alarming news that she might have a life threatening disorder and possibly die within her first year of life. As you can imagine, we just couldn’t believe it. We were shocked and horrified that this wasn’t some minor muscle problem. As we sought out expert neurologists, genetic tests, MRI images, and EEGs, we began to PRAY earnestly for the Father to help us. Our friends began to pray earnestly. Our pastors and our families all began to pray. God revealed to us immediately that she was His, and that He was in control. It was as if God was with us every step of the way. What He has called us to walk through, He was equipping us to handle only through His power from the Holy Spirit. Step by step. There was peace in those days and there is peace today.
After several appointments, we were given a diagnosis. Lydia has a rare brain malformation. It isn’t genetic, and there are varying forms of severity. Ultimately, it is just the way God made her. Learning that she would have some disabilities was not a new beginning that we would have chosen, but it was a new pathway on our journey. A detour in our planned route. The doctors are unsure of what her limitations will be and there aren’t a lot of “positive” outcomes, but our God will have the final word here. We will continue asking Him to help her grow stronger every day. One year into this diagnosis; He has done just that, one day at a time. Although we don’t understand why this has happened, His word says “My thoughts are not your thoughts. My ways are not your ways.” (Isaiah 55:8)
Our new beginning has brought us closer as a family, something that seems shocking to me and I don’t want to say it lightly. With so much heartache and alteration in our home and daily routine, our God has been VERY PRESENT in our time of need. We rely on the Lord in such a different way than we ever could have if everything were “normal” and Lydia were perfectly healthy. God has taken us by the hand and allowed us to have our days of sorrow, but He hasn’t allowed us to stay there. Days are now full of physical, occupational, developmental and speech therapies. Obviously, we never would have planned spending time this way. However, God has given us the most wonderful people to work with Lydia. Our therapists are our angels His hand has provided. He has been FAITHFUL in every way. He has graciously given us everything we need from a wonderful and supportive group of family and church friends, to a unique insurance program in Arkansas that covers many of our expenses, and the list goes on and on. Although it isn’t the beginning that we would have started on our own, it is well with our souls. “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28).
Psalm 127:3 says that “Children are a heritage from the Lord,” and James 1:2 says to “count it all joy, my brothers, when you meet trials of various kinds.” We can see Him at work in our lives and in our family, and we know that we can trust Him. It’s a very sobering thought to consider that He knows just how much we can handle, and He will not give us any more than that. I pray that our lives glorify Him as we cling to the Hope that He provides. We know that this is all TEMPORARY! This world is not our home and we press on toward the prize for which God has called us heavenward in Christ. (Ephesians 3:14)
Heather Nix is a former public school educator for Jonesboro School District and a realtor for Exit Realty. She currently resides in Jonesboro, AR with her husband and three children.