When I found out the news of your birth defect I was scared. Fear raged so fiercely in my body that at times I could not focus, blink, or even muster a word. I remember one moment after hanging up the phone with the doctor I felt like I couldn’t breathe, I knew air was coming in and out of my lungs but I felt as if I was suffocating. I knew nothing about your condition; it was something I had only seen on those sullen commercials of children in foreign countries with bare feet on dirt roads, commercials with the famous voice-overs pleading for the viewer to help.
I never met anyone with your condition growing up; no kids in school were like you so the news we received was uncharted reality for us and we were scared for you. During pregnancy, I was required to have many extra ultrasounds, and each time I got to see your little face, my heart loved it more.
Every time we saw you, the guess on the severity and extent of your condition changed, sometimes granting us relief and sometimes intensifying our worry. We prayed for God to heal you completely because we didn’t want our precious daughter to endure one second of what was to come, but we knew the most important thing was that you were healthy in every other way.
During your birth, I was afraid. We were told any time I rolled to the left your heart rate declined. The nurse said that made her nervous so she made me stay on my right side. Fears of the worst flooded my thoughts—were your lungs filled with fluid, something we were told could happen with your condition? Was there an associated syndrome that was not previously found? What was going on in my own body that was causing you harm with a simple position change? During the hours I labored I sang out to Jesus; I turned on my favorite songs and placed my phone by my head and I sang, I prayed, and I cried for you to arrive safely.
As time grew closer and your arrival was upon us, my fear started to engulf me and I finally just prayed, “God she is yours, if you take her home to you in these next moments, I understand because I love her that much, too.” The time came and our room filled with people, many more than when I delivered your sister. The NICU team stood by our door awaiting the worst; the neonatologist stood in the corner watching and waiting to jump in and save your life, if needed. Your daddy hung by my side encouraging and waiting to see your face.
You came and I was tired, I was scared, and everything stopped for a moment.
The cord was wrapped around your neck and my doctor said she could not slip it over your head and to STOP PUSHING. I did. She cut the cord from your body and I gave the last I had in me and you were born. I was allowed to see your face for just a brief moment before they passed you to the neonatologist so she could assess your condition.
You were stunning—the most beautiful sight I had seen since your sister arrived, and I loved every inch of your precious face.
Your daddy held my hand and could see you across the room; I could not see you at all. At the time, it seemed overwhelmingly loud with the OB and nurses working on me and the other team looking at you—a seemingly deafening commotion. I was waiting for any reassurance, any sound that told me you were OK—and finally we heard the neonatologist yell out, “Her palate is intact, her palate is intact!” I laid back started sobbing saying, “Thank you God, thank you God,” over and over. Your daddy was crying and I think a few of the staff had tears flowing, too. That doctor’s voice will forever be etched in my memory, I will remember the sound of her shouting those words for all of my days.
For 10 weeks, I loved your face. I loved every wide smile, every inch of your lips. I thought you were so beautiful. When the time came to repair your beautiful face, it was so hard for me. I loved you unconditionally, just the way you were, but I knew for you to ever be able to talk, eat, and live a normal life, you would have to go through the repair. Ten weeks seemed so young to have this done, but the best of the best said the younger the baby, the better the outcome.
Surgery day arrived and you were your blissful, happy self, snuggling me in the waiting area for the doctors to come for you. Your team came and one of the doctors carried you away cradled in his arms, just as if he were taking you away for your morning nap.
I would never again see your face as I had loved it from the moment of your birth. Photos and my memory would forever be the only reflection of your beautiful, wide smile.
We were told we would be called every hour with an update. The waiting was excruciating,
I wanted to be with you, to be in that room making sure you felt no pain, making sure you were being cared for the absolute best way, but your daddy and I just had to sit and wait. We were called assured everything was going perfectly, but surgery was going to take longer than expected. Then, finally we were told you were heading to recovery and we would be taken to you soon.
When I laid eyes on you again for the first time it was mystifying.
I knew you were my beautiful girl but you looked so different. Your cheeks, nose, and lips were all so different. Your eyes were swollen from the IV fluids and anesthesia, and even though I saw your precious pear birthmark on your thigh and the flecks of red in your hair, it was bewildering to think you were the same baby I handed over hours before. The site of the repair was bloodied, black, and swollen, I was so fearful of the pain you may experience; I asked God to give it to me, if any pain had to be felt then I would feel it for you.
The next days in the hospital were the most challenging of my life. I felt helpless. Your daddy had to go home to help with your sister and it was just us. People have this misconception of times like this—they think the doctors and nurses take over your care, but that is not true. The parents are the full and complete caregivers. The nurses were amazing as they checked your IV and brought you pain relief, and a couple of them even went above and beyond brining you a mobile to hang on the hospital crib.
I cared for you with every inch of energy I could muster. I held you for hours on end just looking at you, praising God you were healthy, and thanking Him for your life. I held you for hours and I cried.
I cried because I still could not believe my child had to endure this.
I cried because I knew we would be there again and again in the future with more surgeries needed to fully repair your birth defect.
I cried because I thought about the future and how you will be always be beautifully different from everyone around you, always bearing the scars of how you were born.
I cried because after being awake for over 72 hours, I was walking the four-foot radius from your IV pole with my knees and back in so much pain that I thought I would collapse but I knew I HAD to keep going—you needed me to keep standing, walking and holding you.
I called out to God through my tears to please give me everything I needed so I could be everything you needed. On day three, you were laying in the hospital crib looking at the mobile the kind nurses found for you. As I was sitting next to you stroking your arm, you looked over at me and smiled—the first smile after your face was forever changed. I leaned my chin on the crib and sobbed. Your new smile was the most beautiful sight, and in that moment I realized how grateful I was to fall in love with your smile not once, but twice. Getting to see a baby’s first smile was a once in a lifetime experience moms only get once with each child and here I am getting to do it twice.
Now, months later, everyone says you have the best smile, not because it’s different but because it’s yours.
I want you to always know that I thought you were beautiful before and I often miss that beautiful, wide smile. You will forever be beautifully different, and I pray you know what a miracle you are to our family.
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