We were delighted to bring home our second child, Liam. He seemed to be a healthy baby boy. We thought he was perfect: 10 fingers, 10 toes, and startling blue eyes just like his big sister, Sophia.
As the months went by, I began to notice that Liam was not developing like his sister had – or like any of the other babies that I knew. My very first realization of this came when I took him for his six-week pictures – a stress-filled experience that took two tries and yielded only one or two halfway decent photos. I remember driving home and wondering why, when Sophia was that same age, we had been able to get her to concentrate on me and end up with so many great photos, whereas with Liam, not only was he fussy, but we could not even get him to look at me or a toy long enough to take a good photo. That experience left me with a sick feeling in my stomach and a nagging worry. Time passed and Liam grew, but he didn’t meet milestones. He didn’t roll over or sit up during his first year of life. He didn’t learn to crawl, walk, or run.
As it became apparent that something was amiss, we began to search for answers. We visited every specialist I could think of. Our pediatrician thought that I was overreacting and that Liam would eventually catch up and be just fine. After all, every baby develops on his or her own time schedule. Despite his assurances, I was calling every medical professional that I could find. I had to find out what was going on with my son. We spent hours in doctors’ offices (in addition to the hours we were spending in therapies) and underwent many tests requiring sedations, blood draws, you name it. We left no stone unturned.
Finally, one afternoon our world was tipped on its’ side with a phone call. Liam’s pediatrician read me a diagnosis that I had never heard before, MECP2 Duplication syndrome. He went on to say that what Liam had made him severely cognitively disabled, would give him great physical challenges, and would extremely decrease his life expectancy. I had never allowed myself to consider that Liam had something so severe and that he might have something that couldn’t be fixed. As if Liam’s diagnosis weren’t enough, I also learned that I carried the duplicated gene. It felt like our dreams for our beautiful Liam were shattered and on top of that, what about the family that we had planned and hoped for? What about more siblings for Sophia? Would she never have a typical brother or sister whom she could play with, fight with, and confide in? How would we take care of Liam? How would this affect Sophia? The questions in my mind were endless. I was shocked, rattled and devastated.
That shock and devastation has numbed over the years. It has been replaced by a lingering sadness and a fierce love for our son just as he is. As the years have gone on we have certainly faced life-altering challenges and daily struggles. We have learned all sorts of medical things that we never knew (or wanted to know!). Liam’s kind and gentle nature have encouraged everyone he meets. He has taught us about a deeper love for others. His very needs and existence encourage us in a closer relationship with our God. We have enjoyed friendships with teams of professionals who have loved our boy and taught him and us so much. We have seen that sibling relationships of every kind are beautiful, fulfilling, aggravating at times, and worthwhile.
While we have learned and grown and loved our boy, it has not been without an aching heart. We still lament the life that we hoped for. We are sad for all of the things that Liam misses out and all of the medical challenges that he faces. The day to day caring for Liam and the difficulties of aquiring help along the way can make us bone weary. This special needs road is not an easy one. Yet we know that even in this unexpected life of ours, God’s grace abounds. He heals, restores, comforts and strengthens. He is a God who saves.
“He who did not spare his own Son, but gave him up for us all–how will he not also, along with him, graciously give us all things?” (Romans 8:32)
We are so thankful when God allows us to see glimpses of his restorative and comforting hand here on earth. These are the moments that give us courage to go on. They remind us that God is before us and behind us and on every side.
My book is a collection of stories about moms who have faced unexpected and difficult things in life with a child who has special needs. Show Me Your Mighty Hand uses challenges faced by Mary, Jesus’ mom. She faced difficult and unexpected things and God’s faithfulness to her can be an example of God’s faithfulness to every mother.
As you read the stories in the book, I hope that you are encouraged by God’s presence and promises in the lives of each of these moms. I want your eyes to be opened to his presence in your life, your child’s life, and your family’s life. I pray that reading these stories encourages you to trust God’s plans even when you don’t understand them.
Wendy Heyn taught early elementary students in Christian schools for ten years before staying home with her three children. Her experience as mom to Liam, who has MECP2 duplication syndrome qualified her to write Show Me Your Mighty Hand, available through Northwestern Publishing House.
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