April 2, 2011. The day the Lord graciously allowed me to marry my college sweetheart. We met at a Special Olympics meeting, and it truly was love at first sight. We dated for almost five years while the Potter continued to mold both of us into the husband and wife He desired us to be. Albeit messy and imperfect, I would not change a second of our dating years because it was through all the ups and downs that He prepared us for what was to come. We are stronger for every bit of it. Already, the Lord was showing us that He would pick up the broken pieces of our lives and make something beautiful. Our wedding and honeymoon was that of a dream.
Hugh was in medical school at the time, and I was a Social Worker at a therapeutic day-care, Children’s Place, Inc. I worked with high-risk families and families who had children with special needs, and Hugh determined He was being called into Pediatrics. Thread after thread of our lives being sewn together for His ultimate plan. We went on several mission trips during Hugh’s years in medical school in which God drastically changed Hugh’s views on the nations, the Gospel, and what that might look like in our lives. When God called us to residency in Birmingham, Alabama, children were not the top priority on our to-do list. BUT GOD.
September 24, 2012. The day we found out that we were pregnant. As we prayed through the initial surreal emotions involved, we quickly got to a place where we were excited and comfortable with adding a baby to our family. Hugh is a twin, but for some reason, we never even contemplated the possibility of us having multiples. As we sat in the ultrasound room at our first of many appointments and were given the news that there was not one, but two babies, in my womb, I was hit with the stark reality, maybe more firmly than ever before, that my life was not my own and our plans are not God’s plans. I was scared. Scared that I would not be able to carry twins; overwhelmed with the idea of taking care of two babies during such a busy season of life. It seems as if just as we get comfortable with where we are in this journey of life, God throws a curve ball in our direction in order to fix our eyes back on Him.
Hugh began to memorize Psalm 139, and I began doing all that I could to have the healthiest, longest pregnancy possible. We knew that it was a possibility that we would have our babies prematurely, we knew that multiple pregnancies were high risk, but for some reason I never worried. I truly felt the Lord carrying me through the whole thing, and knew our babies were in the palm of His hand. Amidst a lot of sickness and fatigue, the girls continued to look great and we had no reason to believe that they would be anything but perfectly healthy, developing children.
April 24, 2013. The day our lives were changed forever. I was 36 weeks, 6 days pregnant with the girls, and things had been going well. Because of a lack of growth from one of the girls for a couple weeks, our doctor decided it was time to go ahead and deliver them. It was a seamless delivery, and both Ally Ruth and Bailey Grace came to the room with us at first. Due to a low blood sugar and a low temperature, they were taken the the NICU. No breathing or feeding issues, and the nurses continued to tell us that we were the healthiest babies they had taken care of in the intensive care unit in a long time. We were blissfully grateful that everything seemed to be “okay”. ,
Fast forward through a couple blurry months of nighttime feedings, sleep deprivation, and simply trying to survive the newborn trenches. It became apparent to our doctors, to family members, and to us if we could have even begun to admit it, that something was just “not typical” about our girls. As they developed, they just seemed to be behind their peers in many ways. Grief is a funny thing; and Hugh and I needed to be given the space to process these truths. Like any parent would, we so desperately wanted to believe that the girls were going to catch up soon. We began making appointments with some specialists and went ahead and put the girls in early intervention, “just out of precaution”, we told ourselves. At some point, as parents, we all realize that God’s vision for our family and our children is different than our own. For those of us who have children with unique needs, this truth comes all to quickly and is piercing to the very core. We went to the neurologist in November, November 14, which is my birthday, to be exact. After hours of talking and examining the girls, and a couple of blood tests, she determined that she wanted us to begin physical therapy, but said that we would not do any further testing unless the girls were not sitting by the time they were 10 months old. We breathed a sigh of relief, knowing that they would be sitting in no time. They weren’t.
February28, 2013. The day our neurologist informed us that the girls hypotonia (low tone, which is the initial description the girls were given) was not benign. I will never forget as long as I live her looking us in the eyes and saying, “I am very worried about your children. This is not benign hypotonia, and I think something is very wrong.” Wrong? I remember thinking. There is NOTHING wrong with my babies. Blood tests were scheduled, an appointment with the geneticist, an MRI was put in place, and Hugh and I left with heavy, heavy hearts.
A couple of years and a few researched tests later, we have been given the diagnosis of HECW2. At this time, our girls are two of twenty-something in the world that have this de-novo (not hereditary) disease. We have so many things unanswered, yet we serve a God who is The Answer to EVERY mystery, and who holds each chapter of all of our lives in the palm of His hand. As my husband often reminds me, we are, “perplexed but not in despair” (2 Corinthians 4:8) because we know a Greater Hope awaits us. While we may have a semblance of a diagnosis, no true prognosis or estimation of what the future will look like for the girls has been given. This has resulted in us living each and every day like the gift that it is. We will serve Him and Him alone. Regardless of what tomorrow holds, the difficulties that we know have the potential to arise, whether or not our girls ever have mobility, we will serve Him. I am so thankful that He knew in His wisdom to give us a life story that we would have been afraid to choose for ourselves but that ultimately is bringing us closer to Him and has brought so much glory to the Eternal. We pray. We wait. We praise. On some days, we grieve- but never without Hope.