I had taken time off from writing, between Livi and her sister Mia our summer schedule was extremely full. Livi started a very rigorous therapy schedule which I will soon unveil and show her progress. We have met some very incredible people who have played a crucial role in Livi’s strength. Right before Livi started physical therapy, occupational therapy, and speech therapy we still had a fragile and quiet baby. I write this not to have anyone feel bad, or have sympathy towards us, but to connect with anyone who is struggling with being a mom, dad, or caregiver to a medically fragile babe. I’ve walked in the trenches, I feel you, I hear you. Keep going. And to those who have never experienced set backs, be kind, you never know the brittleness of someone’s heart. There is immense strength in each of us.
Livi never cried. She was not happy, nor sad. She was never cold, nor hot. She was simply here. Hardly able to breathe on her own, struggling with severe reflux. The pain and irritation her throat has endured. Never upset. Never expressing her emotions as a baby normally does.
There were many nights I cried myself to sleep. When dark came and everyone went to sleep. I began reading online, as I began to read, I also began to cry. What was my new life going to be like? I was mourning the life I had planned for. The life I had prepared for. But each morning the sun would rise, we would wake up and start the day fresh. I would wash my face, put on the smile my toddler needed to see and begin my role as “mommy”.
One night in particular I expressed to my husband Josh how “she just doesn’t cry.” “She doesn’t need anything, she doesn’t want anything. She’s just here. I can take her from a warm bath to a cold December room, and nothing.” She would lay there waiting for me to dress her low tone body. Wait for me to feed her to sustain her life, but never demanded food. She never cried if the bottle was an hour late, she never made a fuss. This particular night was one I rolled over and silently cried until my eyes closed. Then morning came and the day continued on completely normal, my new normal. Then night came. This night was different, Livi was whining. We were used to not sleeping because she was not breathing. But this time, this beautiful time. She was breathing, and whining! She kept us constantly awake all night with this whining. Not once did I get upset with the lack of sleep. I was overwhelmed with joy, my baby was “crying”!
As Livi gained strength from the nutrition she is now getting with a feeding tube, she also gained her voice. Her cry. She is extremely content, a warrior with incredible strength and resilience. As I tried to pull myself up from a deep place of sorrow, I started teaching Livi words. Whether she would be developmentally delayed, or even intellectually disabled, I would not let that define Livi. Sure, she is not learning sign language and descriptive words I was teaching my first born at this age. But Livi is indeed learning, and the joy it brings. Our first word was “kiss”, I would ask for a kiss, as she made a movement, I would then kiss her cheek, and repeat the word “kiss.” This word would be repeated daily for approximately 2 weeks. Then our next word, “hug.” I asked Livi for a hug, as she made movement, I would hug her and repeat the word “hug.” During the daytime Livi gets an immense amount of hugs, from all of those around her. She is the queen of snuggles. However, when it gets night time, Livi must sleep in her own bed for multiple safety reasons but also because she wears a pulse oximeter on her foot and she gets a continual overnight feed of formula through her feeding tube and pump. This, this is when Livi now cries, at night when she prefers to be held. When placing your hand on her chest, she instantly stops. God hears our cries, He answers our prayers. I once cried out, “please let my baby cry.” And another time, “please help my baby to gain knowledge.” Answer my prayers He did, Livi CRIES every night because she KNOWS what hugs and snuggles are. God is reminding me, he is still in the miracle business. We should never give up hope.
Livi cries at night when she wants to be held, she cries when she rolls on her stomach and doesn’t want to do tummy time, she cries on long car rides when she wants to join in on the conversation, Livi cries. She gets all snotty, and really upset sometimes. I am reminded of the answered prayer those tears are.
“we should never give up hope
'Cause we serve a God who turns impossible Into living, breathing, walking miracles” -Walking Miracles by Matthew West. This song is blared over my speakers, over and over and over again. The first line I sing, then rewind and sing the first line again. Rewind. I replace the first line of the song with Livi’s name, and sing much louder than my blaring radio. I will never give up hope, not that there haven’t been times where giving up hope seemed easier. God made Livi a warrior, a small human with enormous strength.
She is defying all odds. No one can predict her life. And for my A type personality this has been one of my biggest struggles, not having an exact plan. I take each day one day at a time and control what I can. Which is actually very little. When it comes to organization and planning I am on it. When we were given Livi’s medical equipment and supplies in cardboard boxes at the hospital during discharge after her g tube (feeding tube) surgery, I was ready to organize and ensure that I did everything exactly as described so that Livi would have the best chance at surviving. On my kitchen wall I created a spreadsheet. It detailed each item that needed to be replaced, how often, and dates for the next 2 months where one could initial in the box when the product was changed. My kitchen cabinet where I once held my serving platters and floral vases was re organized with a turntable full of medicines, different syringes, and labeled containers of supplies.
One afternoon our home health came to deliver some supplies we needed immediately, she noticed the spreadsheet on the wall and inquired about it. We all chuckled at my organization. But this. This is what I could do, what I could plan for. I knew in 2 weeks on the exact day to change out her nasal cannula, I knew 1 week on the exact day to change out her g tube extension. Initials were by each product date to be changed for verification. When my life was spiriling out of control, when my future was unknown. I quit my job, put my career on pause, and took on the role of full time stay at home mom, a complex care mom.
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