Here I am as I find myself late at night with a story on my mind and a message in my heart. It brings me to tears and it’s the second day I feel internally nudged to share more about my story about the sweet child we lost. When God Calls You by Name you know it, if you allow Gods voice into your life you listen and let it heal you. This is the story of how God quite literally named our dying baby.
I’ll never forget the moment. I went into my OB appointment fully expecting a healthy baby as we had heard a strong heart beat, my pregnancy symptoms were strong and all my labs revealed a “healthy” baby. Because of these facts and it being our fourth child I reassured my husband he could stay back for our appointment. I remember seeing a flash of my ultrasound and my sweet child was looking more like a cute full formed baby almost sucking her thumb. In that instant I fell in love more and in that same instant my heart dropped. The tech got quiet, she couldn’t see the baby’s profile.Where was her nose? I knew something was wrong. It felt surreal.
The tech left to get the doctor and I cried.
I called my husband and frantically said, “Something is wrong. I am sorry!”….. amidst my tears. There’s an odd ownership or guilt I felt at first when I knew something was wrong. My husband consoled and comforted me on the phone. I was transferred to a specialist the next day.
I remember the drive. We had never driven to Seattle faster. We both were physically sick yet trying to keep our mood as light and hopeful as possible.
My husband and I were meeting a genetic counselor and the best neonatal specialists in our region in less than 24 hours from my ultrasound. We thought we were looking at a cleft palate issue but deep down I knew it was worse. I knew my baby was going to die although I didn’t tell anyone at this point. I know morbid and odd but somehow I just knew.
Again another quiet ultrasound with an awkward wait as I look at my husband with tears in my eyes asking, “What will we do? How will we care for a child with no functioning?” Again, my husband reassured me.
The doctor returns to confirm our baby has one of the most rare and lethal malformations of the brain called holoprosencephaly. Her brain was lacking a frontal lobe and that was just the beginning. I haven’t let myself speak or look up the diagnosis for a year in fear of the anxiety it would cause me but today I did. Basically, our daughter had no chance at life whatsoever. There was nothing in her brain that would keep her lungs breathing and her heart beating once apart from me. Chances were she would die in my womb, be still-borne, not survive labor or even know how to come out if she made it that far or , although the likelihood was less than 4%, be born to then take her last breath. It was heartbreaking, scary and surreal. We had no choice other than to prepare to deliver our deceased daughter at what point we were uncertain.
I will never forget the love and empathy shared by the doctor that day. An image I’ll never forget was of a medical resident standing quietly by the wall, as he was learning, trying ever so hard not to cry with me. I felt for him. The humility, sadness and empathy was palatable in our exam room that day.
We entered this appointment with hope and left with a hospice visit and ultimately a funeral to plan.
As we drove 4 hours home in shock and sadness the need for a name became more important than ever. We needed a name for our beloved daughter. We needed a name to pray for (as we were still praying for and believing a miracle could be possible) we needed a name to say, “I love you” to.
Finding the perfect name was not coming to us in the urgency we felt we needed it to. Then just as Psalm 139 says, “Gods knows us in our mothers womb” he called my daughter out by name. As I pleaded and quiet frankly demanded and even cussed for our daughters name … God answered!
I remember the moment, where I was standing, what I was doing and in my mind quite frankly speaking to God , “Damn it, I need a name God… now! “. Amidst my tears and sense of urgency in the very moment of my request the name Tyia popped in my head.
God only knows I need meaning for my babies names and I always research the literal meaning of my children’s name before I choose it. So I rushed to find my phone and there it was as I searched the meaning, I knew it was the one. As I looked at my screen and it said Tyia – “Gods Gift”. I cried and contacted my husband and that was it, we both knew. Tyia our sweet daughter, with no chance for life here on earth, for us to go through the hardest thing we have ever faced yet God called her by name.
She was a GIFT and taught me more in the weeks to come than in all the years of my life. That though is for another time to share.
Gods impeccable timing is powerful!
My prayer to anyone reading this, is this: God thinks the same of YOU! YOU are a gift! For God to call a life that only lived 5 months, malformed and incapable of taking a breath on earth, a GIFT…… how valuable are YOU to God?!
Your pitfalls, your error, your “lack”, your “failures” …. God still sees each one of us as valuable, as His beloved and a GIFT.
How much does your baby in the womb matter, your child who’s made poor choices or your parent who may have lacked presence in your life? God sees who we really are outside of the illness, poor choices, fear or unknown. I have never experienced Gods presence more than in this time although it was the most painful time of my life.
I don’t know to what magnitude or why I feel so strongly led to share this story but I believe it’s for a reason and for YOU to take hope in God who IS LOVE, more deep and intricate than we can imagine. I encourage you to lean into God, let him call YOU by name and you may just find a promise and purpose for your life far greater than you ever imagined. Dovidenia. XO
*For more on our journey through infant loss see how we maintain hope and my letter to the daughter we lost.
