Meet Ellie

Usually my husband, Chris, and I agree on the important things, but when it comes to names, we are essentially opposites. Only one girl's name met all name criteria for each of us, and now that we know our daughter who bears that name, we understand that it is perfect for her in every way.

Eliora is her name; it means "God is my light." Our prayer since we learned of her life last June has been that our child would grow up loving the Lord, saved by His grace, and walking in the light of His glory. Her name expresses the truth that God is our Light - His Word is a lamp to our feet and a light to our path. This imagery of walking with our Creator as He illuminates our feet and path is especially meaningful now that we know how she will be particularly challenged to walk (more on this in later posts).

Allow me to introduce you to our sweet baby. Eliora (we call her Ellie, too!) has her father's facial features, piercing, deep blue eyes, dark hair, and a tiny chin. From day one her neck has been extremely strong, and she throws it around regularly. People often comment on her long fingers and adorable button nose.

When she cries or coos, her little girly voice is sure to win your heart. We have been told by many people that she has the cutest cry of any baby they have ever heard, and people in church know exactly where we're sitting as soon as she hollers in the middle of a service. Ellie's precious feet point outward instead of forward; this is because she was born with a bone deformity called Congenital Vertical Talus (CVT), which I will explain in a later post. Her toes are the most kissable.

Ellie's personality makes us laugh daily. Her eyes are expressive of her interest, disapproval, contentment, and pain. The changing table is her happy place, especially if she is naked and bicycle kicking her little legs. She loves bath time and will contentedly sit in her hippo towel for a surprisingly long time.

Ellie's best friend is the ceiling fan; she could stare at it all day. Lights and mirrors take second place. She's a girl who knows what she wants and waits impatiently for Mom and Dad to figure it out. Sometimes she wants all of the snuggles and sometimes she's Miss Independent who needs some time to herself. We have cherished every moment of getting to know this tiny human and her many quirks, preferences, and tendencies.

Some of Ellie's behaviors seemed inexplicable for the first several weeks of her life. I could not make breastfeeding work no matter how hard I tried, and even bottle-feeding Ellie my milk seemed to be so much harder than it should be. By this I mean that it would often take an hour or more to get half of the recommended amount of milk in her tummy. She was clearly struggling to eat, which made sleeping difficult and crying the norm. We made many trips to the pediatrician during her first few weeks of life because she was not gaining weight as quickly as they would have wanted, but no one could explain why she had so much trouble eating.

When Ellie was born and diagnosed with CVT in her feet, the doctors ordered testing to see if any other genetic abnormalities accompanied this condition. I was once again visiting her pediatrician to address Ellie's feeding difficulties when she was six weeks old, and this was the day we received the results of those tests and a second diagnosis. None of the "typical" things which are associated with CVT were found, but the tests showed an unrelated deletion in her fifth chromosome which results in a rare disorder called Cri du Chat Syndrome.

In short, children with this genetic defect are characterized by their high-pitched catlike cry (Cri du Chat is French for "cry of the cat"), low birth weight/slow weight gain, feeding difficulties, and several physical characteristics and potential health complications - all of which began to explain some of what we had been struggling with for no apparent reason. Ellie's pediatrician shared that physical and developmental delays on a spectrum are also to be expected.

Today is Day 2 of Cri du Chat Awareness Week. I plan to share more about Ellie's disorder and our experience navigating this unknown terrain throughout this week and then beyond through this blog. It has been created with the intention of telling God's story as it plays out through our daughter's life. This will no doubt be therapeutic for me, but I also pray that it encourages others and serves as a witness to the faithfulness of God.

When it comes to knowing our Ellie, the most important piece of her identity is that she bears God's image and was fearfully and wonderfully made exactly as He intended. As I share more in the coming days and weeks of how we have processed the news of Ellie's disability, know that it is marked with confidence in the sovereignty of God. This sovereignty is not cold, unfeeling, or random - it is loving, purposeful, and wise. We know and trust that all things He ordains are for His glory and for our good. Our faith in Jesus Christ is completely central to everything about our lives, and by it we have great joy, peace, and hope that is founded on our Rock and Redeemer.

My mom had an incredible response to her granddaughter's diagnosis. She relayed that her mind kept coming back to the blind man in John 9:1-3...

"As he passed by, he [Jesus] saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”

Jesus' words give us a reason for the trials our Ellie will face: that the works of God might be displayed in her. This is indeed an answer to our prayers, though not in the way we expected. Our greatest hope for our daughter is not that she will make a great name for herself through successes of various kinds; we hope to see Christ's name made great through her life and the greatness of our God and His purposes displayed through her powerfully. We pray that God would save her soul and hope others who see her will be drawn to the light of Christ. Let it be so, Lord Jesus.