Numb can best describe how we felt when we first heard the list of diagnoses and conditions assigned to our 27-week premature baby girl. Some we had heard and others would become intimately known as time crept by over the years. To my husband and I, she was Emma Grace. To the medical world, she was a mess. A fragile, neonate, hardly worth fighting for and saving. Numerous times we were advised to remove the ventilator and let her die. After all, she would enjoy no quality of life according to the hospital ethics team who decides on those matters.
When medical providers speak of her, these are terms and labels we most often hear:
Group B Strep
Reactive Airway Disorder
Gastro Intestinal Reflux Disease
Strabimus, Lazy Eye, Near Sighted
Epilepsy (Myoclonic Startles, then partial clonic-tonic, then grand mal)
Intra-Ventricular Grade IV Brain Hemmoraghe
Bilateral Hip Displacia
Then we added procedures such as:
Omaya Reservoir to drain spinal fluid from her brain
Feeding Tubes of several varieties: NG-Tube, G/J Tube, G Tube, Mickey Button
VP Shunt (sometimes two shunts at a time)
Strabismus Eye Surgery
Bilateral Hip Surgery
Scoliosis Surgery to insert metal rods in her spine
Vegal Nerve Stimulator Placement to control seizures
Nissen Fundal Placation
Oh and we’ve added in dozens of other procedures like MRI, Ultrasounds, CT Scans, PET Scan, Endoscopys, nearly 80 blood transfusions, Shunt revisions, VNS replacement, and daily doses of medications that would be difficult for most adults to consume. Her list of therapies, depending on what is happening in her life at the time, have included: Developmental, Aquatic, Hippo, Speech, Occupational, Physical, Language, and Feeding therapies.
Yes, this is the life of our little neonate, now on the precipice of celebrating her 13th birthday in a few weeks.
But in our home, she isn’t any of those things listed, she is Emma Grace: smart, sassy, fun loving, beautiful, Daddy’s girl, momma’s joy, Spencer’s sister, and refreshing soul to all who meet her. A beautiful child who loves to toss a ball, tear magazines into tiny shreds, put toys in and out of containers, pass cards to a partner, play the Wii just often enough to irritate her brother, a girl who absolutely loves to eat, and a child who loves music. She laughs at bodily noises like coughing, sneezing, and other things! She loves to shake hands at church, refuses to let a collection plate pass by without dropping a coin or crinkled up dollar in the church depository. She is incredibly opinionated about her hair accessories and what type of music can be played in her presence. She is just our daughter, our precious, complicated, Emma Grace.
The journey of allowing her to have an identity outside of her list of diagnoses has been a long one. I remember times of almost “apologizing” for her behavior by saying things like: she has cerebral palsy, she’s autistic, she can’t see well, etc. I wanted people to give her grace. I wanted her to have a reason to be accepted. It took a while for God to heal my heart and teach me that she is completely perfect as she is in His eyes. No apology needed.
Trust me, I am not minimizing how a diagnosis or label can rock your world. No one wants to hear that their child is less than perfect. All sorts of emotions and reactions occur when this happens. We want our child to fit in, to have a chance at a full life, to do what other children can do. I get that. But I also realize that there is no “normal.” God creates one-of-a-kind masterpieces. He never duplicates anything. Every person, snowflake, sunset, rainstorm, grain of sand, fingerprints…they are all unique.
Let us allow our children to be unique as well. Embrace a label, research a diagnosis, educate yourself on a medical condition or procedure. But, don’t, PLEASE don’t, let that become your child. Use those things to gain knowledge, to obtain services, to help your child. They are tools not end results.
My husband and I have had our world rocked so many times during our lives as parents. Unfortunately, from a human perspective, we have encountered loss and disappointment over and over again. But, from a eternal perspective, we have been chosen to add four babies to Heaven’s nursery, parent two children who share our DNA, care for dozens of children in our home through foster parenting, mentor dozens of young people, and counsel and encourage scores of parents as they endeavor to do the same. And the common theme has been that all of these people, to us, have names and not labels.
If you are on a journey of parenting a child that has been labeled, please know we understand. We would love to hear your stories and walk the journey with you. We understand it is a journey filled with fear, uncertainty, isolation, and pain. Please leave comments on how we can specifically pray for you or encourage you. Feel free to “like”, “share”, or “forward” this blog post to anyone you know who may be sharing life with a child that has a label…we would love to learn their name.