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.
December 1, 2018- By God’s grace, we brought home our son- a seven year old boy from China (James) who has cerebral palsy. So much of the start of Seeds and Leaven was a desire and conviction that the, His Hands, His Feet, His Heart rhythm was adding a new beat (and one that started out speaking Mandarin). This is the part of the story where even I am waiting and watching as God plays out His perfect story in these days of our lives. We have been entrusted with these three and one another, and our prayer is always that He would get the glory as our fleeting time unfolds. He is worthy.
At all times.
In all things.
No matter what.
20 thoughts on “Our Story”
Your sweet babies are absolutely beautiful like their mom. What a great testimony in faith and knowing that God’s plan was made just for you and your family. I will prayer that you all find the answers you are looking for!
Thank you so very much! We are so humbled by how God is choosing to use our girls. Hope you are doing well.
Thank-you for sharing this wonderful testimony. The girls are precious and I am absolutely certain that God will continue to reward your powerful faith. Your honesty is equally impressive and gives a bit of hope to those like me who struggle with much smaller issues.
Thank you. I have learned that He is most pleased with our vulnerability and honesty; and the more we open up, the more we are able to connect with others.
This brings to mind the truth of the words;”Suffering produces credibility and common-ground”…but even more than that,it is a ‘bright and beautiful platform to reveal His Grace in your testimony and in your lives.”Thank you”,for allowing the Father to use these precious girls,for His Glory.Sue4Him
Morgan, I am absolutely positive that lives will be changed because of God’s grace in your life. Your unwavering faith and trust in God and your desire to bring glory to him in all circumstances ministers to us all. You and Hugh and Bailey Grace and Ally continue to be in my prayers and on my heart each and every day. What a blessing you are to all of us. Thank you for sharing your journey. Love y’all!!
We appreciate your constant prayers and encouragement! God has been so faithful to us and the only appropriate response is praise and acknowledgement toward others. You are such a wonderful source of support and love!
Thank you so much for sharing your story. As a fellow believer and a parent of a child that has a very unknown future, it is always encouraging to hear of others that grasp what God is trying to teach us through these times. That it’s not just about having a positive attitude, it’s about trust and a God who is incredibly faithful in every moment. One of the biggest things that God has taught me is that praising Him always helps, it’s unexplainable, yet true. ((HUGS))
Could not agree more. Thanks for reaching out, Megan!
Has your girls been checked for Spinal Musclar Atrophy…
They have. Thanks for checking, Janice!
Your story is all too familiar to me. I also had twins and mine were born before 35w because they were no longer growing. One of them has global hypotonia with no official diagnosis as to why. He was diagnosed “failure to thrive” and we also experienced blood tests, MRIs, genetic testing with no answers. We had an early interventionist visit us weekly as well as having weekly weight checks, feeding therapy, physical therapy and occupational therapy until he was 3 years old.
At 18 months old, he had consecutive grand mall seizures and I figured we would finally find out what was truly wrong. We didn’t but God gave us a gift…the day after we came home from the hospital, he took his first steps. That was a miracle!
He is now 5 years old and thriving. He will never “catch up” with his twin brother in size, weight or capabilities but he is a happy child with an big personality and does’t seem to be bothered by his limitations. God has been gracious to us as I know He will be to you too.
I share our story because when I read your story, it took me back to ours and how painful it was to go through this journey but at the same time there was so much growth in our lives spiritually because we had to completely depend on God. We had no control and could not see the future. Honestly, at times, his future looked bleak and I lived in fear. After years of infertility and 3 miscarriages…I couldn’t understand this new trial. When I would get frustrated at his lack of improvement, God would remind me of where we came from. He changed my perspective so that I could see the gifts that He was giving. Your story did that for me once again today.
I love your perspective and pray that you will persevere in your faith and hope in God.
I found your blog through the hypotonia facebook page. I love reading it! It is very inspiring and your faith is amazing!!!
Morgan and Hugh,
Thank you for sharing your story! I am glad to have it as a resource to pass on to others I know who are walking a similar journey. Your honesty and your faith are so wonderful! God bless y’all!
Thank you for sharing your story. We are in a very similar situation with our 23 month old son. We have no diagnosis and are waiting to receive results from a full genetic exome sequencing performed at Children’s Hospital of Philadelphia. I am so glad you have received proactive care in Birmingham. We have struggled to receive help there. I had to beg our neurologist to take a closer look and convince her that all was not normal. Our little man’s smile (complete with dimples) can light up a room! Though he too cannot sit unassisted, feed himself or talk. It’s so uplifting to read your words. It can be lonely sometimes; reading about people in a similar situation is comforting in a way. May God continue to bring us closer to Him and be glorified in and through our situations.
Thank-you for sharing these wonderful testimonial thoughts. It strengthens my own faith to see pure, unadulterated love in your words. God bless you and keep you this day and every day. The boy with dimples will be on my mind and in my prayers today.
I just wanted to reach out after reading (a lot!) of your blog. My friend posted your recent post about seeking others who may share a similar diagnosis as your sweet girls. I can’t say that I can be much help there, but I did have twin daughters that were born on February 23 and one of them died on February 25th. I saw that Feb 24th was a big day for you in their development and it just seemed too close to home… Anyway, I know our stories are very different- but there is also commonality and heartache that is similar, that’s what drew me to your story…
BUT what kept me pouring through the site was your writing. I cried as I read your words because so many of the pleas to God, I’ve plead, too. Thanks for writing out these thoughts with his glory in mind. It was uplifting and restoring for me to read.
Lots of love. Lauren
PS Find me at http://www.aspiringkennedy.com or firstname.lastname@example.org if you ever need anything/want to connect! I hate comment fields for not being better ways of communicating. 😉 xo
Hi, Morgan! I worked for your wonderful dad 30+years ago and he and Sheryl are very special to me. I remember when your sister was born and we moved back to Huntsville, Al while your mom was expecting you. I met you at your dad’s surprise 50th birthday party. You are an amazing Christian young woman and your story has touched me. I will certainly be praying for your family. I got in touch with Dr. Bacon a few weeks ago and he told me about his family. I am ordering your book today.
We have 2 children, Anna Catherine 30, and John Harding 22. My daughter’s husband had a tragic accident 5 weeks after they were married and suffered a severe traumatic brain injury. It has been a very long 5 years…8 brain surgeries, shut placed, shunt revisions, MANY setbacks. We were told he probably would never recover. They came to live with us after he could not continue rehab. He was on a PICC line and feeding tube, non verbal and not aware he was in this world. We did everything for him. Our daughter was so afraid he wouldn’t remember her or that they were married…loooong story. He is on disability and doing so much better. He is walking without a cane and able to drive.
Your honesty touched me and convicted me. This is not the life we wanted for our daughter. They are Christians and did it all right. That is not a guarantee. You can read of the accident and his progress on his FB page, Praying for Jeremy Hays.
God’s plans are certainly higher than ours. So many lives have been touched and changed by his story just as your story has changed lives, some you will never be aware of. Thank you, for your honesty. I’m an open book, always have been. I am proud of our daughter for never leaving his side but it has not come without consequences. She needs healing in many ways. I look forward to reading more if your blogs, now that I’ve found you. You have an amazing family and you are a product of their love and support, but mostly God’s grace.
I know you have much on your plate, but I will be praying for strength, comfort and peace for you and your precious family. Your girls are BEAUTIFUL!
Just found your page and blogs through another special needs friends page. Have enjoyed reading your beautiful words. We have twin girls who’s birthday is Sep,12,2013 so they are close in age with your girls. They are Ttts survivors born at 26 weeks. Both have cerebral palsy and one had many other medical complications. We live about 45 minutes from Birmingham. Love and prayers to your family.