An Unexpected Journey
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.
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Thankfully Gluten Free…Our Journey to Diagnosis
The spring of 2008 was a challenging year for our family. Whenever I saw another family go through a scary time because of health issues with their child, I always felt very sorry for them, but could not imagine how I would make it through something like that. Little did I know, I was about to find out.
Our precious two year old daughter, Savannah Grace, was normally a fun loving, outgoing toddler. She was a vivacious, healthy little girl with a gigantic appetite! But in the spring of that year she gradually became clingy and more grouchy than usual, so we thought she was going through a stage. What was more unusual were the tummy “issues” that she was having. It had suddenly gotten worse, and we thought she might have a milk allergy or something similar, so we took her to the pediatrician. The doctor wisely knew something was majorly wrong with Savannah Grace when she saw how distended her little belly had become. She immediately ordered a blood panel to be administered and helped us get an appointment with a specialist at La Bonheur hospital in Memphis.
As we waited for our appointment, Savannah Grace was getting worse by the day. She would barely eat anything, and insisted on sitting in my lap when she did. Afterwards, she immediately got sick. She was miserable. We prayed over our baby, and waited on the appointment. We were ready for answers.
That day finally came, and my husband, Ryan, drove our family of four to Memphis. We had heard that our doctor was gruff, but we also heard he was the best! He took one look at Savannah Grace, felt her little tummy, and gave us some bad news. He said that something was very wrong with Savannah Grace, and probably had been for some time. He started reeling off the list of tests she needed, and the possibilities of horrible things that could be wrong. The doctor said that our sweet little two-year-old daughter could possibly have Cancer, Cystic Fibrosis, Chromes Disease, a parasite, Celiac Disease…. the list went on and on. We left the doctor’s office crying and afraid. We were scared to put our baby through all of these tests and were terrified of what the results may be. We prayed over her in the parking lot and tried to gain our composure before the drive home… and before the calls to our worried friends and family.
Next was the wait. The weeks that followed are now a blur. I remember feeling overwhelmed and sad, but also I felt a kind of numbness. We sent e-mails out to everyone we knew, begging for prayer. We were asking everyone to pray for Savannah Grace to be healed, or to have a parasite or Celiac Disease. These were the least detrimental of the possible diagnoses from our perspective. Through the weeks of waiting and testing, we were finally able to cross some things off the list, but, the doctor said that her colon was extremely inflamed. She was also horribly malnourished, and had been loosing nutrients when she went to the bathroom. Illness showed all over our daughter…her skin was pale and she was very thin except for her belly, which was incredibly distended. Every day that went by was worse than the one before… she was so very sick. Mother’s Day was approaching and I remember thinking that all I wanted for Mother’s Day was for my baby to be healed. During those few weeks we prayed, quoted scripture, and waited for what seemed like an eternity.
Then, one day, it finally happened. We got the results! Our prayers had been answered. Savannah Grace had Celiac Disease, and could be completely treated with a gluten free diet. I knew it would be a challenge as a mother, but I was thrilled begin this new journey! I never thought I would be so grateful for a mere dietary restriction. Savannah Grace showed miraculous results; they said it could take up to six weeks to recover but she was back to herself in 10 days! Our doctor suggested that our entire family get tested, so we later discovered that our other daughter also had Celiac Disease.
Although my husband and I were overwhelmed with gratitude to the Lord for healing our baby, going gluten free was a little more challenging than I had imagined. Thankfully, I was already very aware of what my children ate, so I only needed to learn to read the labels. This proved more difficult than I anticipated because legally gluten doesn’t have to be listed with the name “gluten.” It can be hidden under broad ingredient labels such as “natural flavors” or “spices.” If we introduce a new product into our family I call the company to verify the gluten free status. My goal is to list everything in my gluten free notebook, but this can be a challenge with three kids to take care of! We eat lots of fruit, veggies, cheese, rice, and plain meat, which enables me to primarily shop the outer perimeter of the grocery store. If either of my girls are going to an event that is not in my home, I call and ask if food will be served, and try to replicate the menu. This could be considered a hassle, especially now that I have school aged children, but I consider it all joy! There is not a day that goes by that we are not affected by being gluten free, but it serves as a glorious reminder of our God. He is a God who answers prayers, a God who heals, and a God who cares… even about going gluten free.
We are a gluten free family, and are living this way with thankful hearts.
What is Celiac Disease?
Celiac Disease is an autoimmune disease of the small intestine, which interferes with the absorption of nutrients from food. People with Celiac Disease cannot tolerate gluten, which is a protein found in wheat, rye, or barley. Celiac Disease is not an allergy, and it is hereditary. Gluten can be found in a huge variety of food, but can also be found in everyday products such as shampoo, medicine, vitamins, and lotion. Symptoms are across the board and may include but are not limited to diarrhea, constipation, skin rashes, stomach pain, distension of the stomach, anemia, depression, joint pain, migraine headaches, etc. Please visit www.celiac.org for a complete list of signs and symptoms.
Rebecca Carwell is a former Elementary school teacher who now is at home with her husband and three children. She has become an advocate for Gluten free food availability at many restaurants in her community and offers mentoring and information to individuals experiencing Gluten intolerance in her area.
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My Mother had Alzheimer’s
My Mother had Alzheimer’s. She was diagnosed with moderate Alzheimer’s disease in February 2004. My Dad passed away in October 2001. The disease seemed to rapidly progressive after his death. I hate this disease. It robs you of memories and all those things that make up who you are. One of the hardest parts of this disease is having a Mother who doesn’t remember you.
My Mother and I had a special mother-daughter relationship. We were close and so it hurts all the more. I was the oldest of four daughters and there was five years between the next sister and me. That means I had five years all to my self. And yes, I was spoiled! Mother and I enjoyed many of the same things. She taught me to sew and cook, and her love for arts and crafts and home design transferred to me. She was a social person and enjoyed being involved with church and other social organizations.
Mother and Daddy took me to church and taught me about Jesus. I asked Jesus into my heart when I was twelve years old during a revival. My Mother accepted Christ when she was a teenage girl and my Dad was older when he accepted Jesus as his Savior. I know she loved the Lord because she told me so and she also modeled the love of Christ in her life. She was not perfect and neither am I. She was my Mother and I loved her.
As we dealt with this illness, many thoughts crossed my mind. Why did this happen? How do you handle the emotions that go up and down on a day-to-day basis? And the following question came to my mind:
“When you forget who you are or who your family is, do you remember Jesus?”
The answer to that question according to my way of thinking is yes. I believe you do. As the disease gets progressively worse, you may not be able to express it but perhaps somewhere inside the presence of Jesus is even stronger. Since the Holy Spirit lives within each Christian until the day we die, He is still there because His promise says, “I will never leave you or forsake you.”
The Lord allowed me to see glimpses of His presence in my Mother on several occasions. One night, I spent the night with Mother. Mother and I had a pleasant evening and I thought she remembered my name although she never called it. When she went to bed, I asked her if she wanted to pray. She said she did and begin to pray, “Dear Father”. She prayed a very sweet prayer and even prayed for this “sweet lady that was staying with her tonight”. And then she spoke to God in these words as she ended her prayer, “I love you, I love you, I love you. Amen.” Mother never forgot how to pray and she remembered all the words to the many hymns she had learned. Mother died on June 8, 2011 when she simply forgot how to breathe.
Thank you Father for allowing me to see You through her and thank you for your care for your children even when our mind doesn’t remember.
Sandra Hardage is a retired public educator who has had experience in public school, public television, adult education and ended her professional career as the Media, Technology and Distance Learning Coordinator for an education cooperative. She is the founder of My Journey of Faith Ministries and leads several studies for women, couples, children and youth. You can read more from Sandra on her My Journey of Faith Blog.