After a very long, seven-year journey of infertility and pregnancy loss, my husband, Casey, and I found out we were expecting. I had extra testing and monitoring during my pregnancy given our previous stillbirth, but everything always came back normal. However, at 31 weeks I began having contractions during a baby shower at work. I went to the hospital and was checked out but sent home on bedrest for a few days. Unfortunately, my water broke the following day, and I began hemorrhaging severely.
words + photographs DR. AMBER ENNIS
Our miracle child, Everett, was born via emergency cesarean birth at 31 weeks. He was 3.5 pounds and 13 inches long. He was not able to breath on his own and had to be intubated. He developed several complications over the next couple of days, including a brain bleed and a partially collapsed lung requiring a chest tube. He had multiple blood transfusions, IVs, a feeding tube, and constant monitoring. It was so scary to see such a tiny baby hooked up to all the monitors and tubes, but as a nurse practitioner, I felt God had been preparing me for this moment. I was able to understand what was going on with Everett and the treatments he received.
From birth, Everett was such a happy baby. He rarely cried despite the hard battle he was fighting. By the amazing power of God, Everett slowly but surely started improving. I was finally able to hold him when he was nine days old. As I did, I prayed constantly for him. I prayed for healing and for his future. I specifically prayed he would be able to come home for Christmas. Everett spent 48 days in the NICU and was finally released to come home on the evening of Dec. 23.
Over time, I began to realize Everett was not meeting his developmental milestones. Because he was born so early, this was to be expected. However, as time went on, he fell further behind. Again, I felt as if God had been preparing me all along for this moment. I realized something was wrong. But with the help of my education and knowledge, I was able to advocate for Everett and enroll him into multiple therapies. When Everett was two, his doctor decided to run some tests to see if something else was causing Everett to be delayed. Everett had blood work done, as well as an MRI of his brain. The results revealed our miracle baby had cerebral palsy and Tetrasomy 18p, a rare genetic condition where there are four copies of chromosome 18 instead of two.
At the time, I was heartbroken and scared about what the future would hold. I did a ton of research and found out Everett is 1 of 250 known cases of Tetrasomy 18 worldwide. I learned he would most likely have physical and mental delays, but he would also have a normal life expectancy. Trisomy 18 (three copies of chromosome 18) is way more common, but it often causes babies not to live through infancy. It amazes me by having four copies of Chromosome 18, Everett will most likely live to old age.
After receiving Everett’s diagnosis, I cried for days. Knowing your child is going to struggle to do all the things we take for granted like walking, talking, learning and eating is just heartbreaking. In the midst of the pain, God impressed on my heart He is going to use Everett in mighty ways. God is going to show His power and love through the life, struggles, and triumphs of this extraordinary child.
It was during those first few days I decided I would never put limits on Everett. I would push him to reach his highest potential and provide him with all the opportunities I could. Everett started in physical therapy, occupational therapy, feeding therapy, speech therapy, and even aquatic therapy. Everett started walking with the use of a walker when he was three. He started taking some steps on his own when he was four. His fifth birthday was in November, and he is about to get rid of the walker all together. He started talking when he was three and a half and can probably say 50 words or more now. He is now able to tell us what he wants/needs, which has been so helpful. He has started swallowing some real foods, such as chicken nuggets, fruits, and vegetables.
I won’t say it has been easy; the progress has been slow. But steady. I have often felt inadequate for the task of parenting Everett. I’m sure all parents feel the same at times, especially those of use with special needs children. However, God often presses upon my heart how He gave Everett to us for a reason. I had no idea we would have Everett some day when I was going through nursing school and eventually a nurse practitioner program. God was preparing me all along to be Everett’s parent. On many occasions, I have been able to use my medical knowledge to advocate for Everett. I have been able to enroll him in the best therapies, helping him to keep making progress. God knew what the future would hold and prepared me for it, unbeknownst to me.
Some people may question why God would make a child with disabilities. I know God has made Everett extraordinary, not just because of his extra chromosomes, but because God has made him for His purpose. Everett is a light in this world. He is the happiest, most determined, and resilient person I know. He brings joy to everyone he meets. He is a frequent flyer at all the therapy places in our area and everyone knows him by name. He has to say, “Hi,” to every person as we walk in, including all the people in the waiting area. So many people have followed Everett’s journey from birth. We are told frequently what an inspiration he is with all he has gone through and his ability to just keep smiling. God has definitely shown us how He can use all things for His glory, including this special child who has inspired so many. AE
Dr. Amber Ennis is a follower of Christ, wife to Casey, mother to a daughter and to a son who has special needs. She is also a family nurse practitioner who teaches online at Herzing University. Amber and her family live in Nixa, Missouri.
Cover Miracle baby Everett going home on Christmas Eve Eve with his mom, Amber, and dad, Casey.
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