Every expectant parent has dreams for their child’s future. It’s a natural part of becoming a parent. We imagine cheering them on at little league games, dance recitals, basketball, debate club.
We hope. We wait. We anticipate the joyous arrival. We allow our minds to open doors to the future. But what happens when life slams the door on your dreams? What do you do then?
I was overjoyed to find out that I was expecting our first child. My husband and I had been trying to have a baby for a very long time.
Noah was born one month early, but he was in good shape. He only had to stay in the hospital one extra night. Life as a new mom was good.
As he grew, I began noticing that when other babies were starting to focus on their momma’s gestures and figures moving on the TV, Noah wasn’t, and his eyes were constantly moving back and forth. Our pediatrician said there was nothing to worry about, it was probably a lazy eye, not to worry about it until he was six months old. Well, unfortunately, I, as a first-time mom trusted what my pediatrician said.
Shortly before his six-month birthday, Noah was sick, and we saw the same pediatrician. He asked: “Have his eyes always done that?” I reminded him about the previous visit. His reply was that it was not a lazy eye and I needed to take him to a neurologist. Those are never words you want to hear about your baby. We saw the neurologist and an ophthalmologist. We were given several possible scenarios. Doctors decided Noah needed an eye exam under anesthesia.
A few days later, we arrived at the hospital, early in the morning. I snuggled him, dressed him in hospital pajamas, kissed him and said goodnight. After an hour, the doctor came out and asked us to follow him to the little room. Being sent to the little room is never a good sign.
He told us Noah was blind and nothing could be done. I cried for about a minute, then asked, “What do we do next?” I knew God had something amazing planned for my boy, even though right then, it was hard to imagine. I had so many concerns. How would I know how to help him? How would he learn? I had never even met someone blind. Why would God allow this?
I spent the next day, just holding Noah and praying. God soothed my soul. He gave me hope by letting me know that Noah was His child too. He would always be there to guide him and me through this journey.
Noah’s doctors believed he had something called persistent hyperplastic vitreous or PHPV. However, that usually only occurs in one eye. He had it in both eyes, so we needed to see a geneticist. Our six months were filled with doctor’s appointments and prayer, prayer for answers, prayer for peace, prayer for understanding.
The tests showed he had Norrie’s Disease. Children with Norrie’s can have a multitude of symptoms, ranging from behavioral problems, autistic behaviors, and blindness to hearing loss. Blindness was one thing. This was something else. I didn’t know how to face it. Worse than that, I found out that I was the reason he had this. With Norrie’s, women are the carriers and men display the symptoms. It killed me to know it was because of me that Noah would face these incredible obstacles in life. Again, I pleaded with God. How will I raise a child with these special needs? I’d never spent much time with special needs children. Will he be able to learn? Will he be like other children? It was heart-wrenching. But once again, God met me in my pain. He said daughter, I am with you. You are not on this journey by yourself. Trust me.
Now, fifteen years later, I won’t say it’s been a bed of roses. Some of the toughest times for me were when we attended events with other children. More than once I have left a birthday party nearly in tears as I watched other children happily running around playing games, while Noah sat with me. There just wasn’t anything there that he could do. But God doesn’t promise us that life will be easy. He promises us that He will be with us through the difficult times, and He has been faithful in that. Each time, He would give me a glimpse into some other amazing trait Noah has, like how well he plays the piano by ear and by memory.
As he has gotten older, I sometimes tire of listening to him talk nonstop about one particular interest, as part of his autism spectrum, but then he reads me the story of a country he created, with rules and religion and I think how incredibly blessed I am to have such a creative, smart child.
God blessed me with a son who will never be like other children, but he is kind and thoughtful, intelligent and creative. He is my perfect gift from God, and I can’t imagine my life without him.
I serve a God of hope. I serve a God who says that he will stick closer to me than a brother. In Jeremiah 29:11, God tells me that He knows the plans he has for our lives and they are plans for hope and a future, plans to help and not harm us. I knew many years ago that even though I could not imagine the life my son would have; God already knew and He was already putting things in place.
God’s hope can allow you to see situations differently and help you look forward to each new day. How will you let your hope in God help you change your perspective and look at your life in a new light?
Karen Hollowell lives near Richmond, Virginia. Having been a public-school teacher for most of her adult life, she recently left full time teaching to focus on writing and spend more time with her kids. She enjoys family activities like attending Christian concerts, travelling and playing at the park with her two children, Noah and JiaXin,
On those rare occasions that she has to relax, Karen enjoys reading while snuggling with her two cats, Benny and Belly. Faith, family and living out God’s purpose for her life are her most important life goals.