But today…

With each new post there is more exciting information and new updates of Livi’s progress being documented as her diagnosis unveils itself to us. Our “normal” life is quite different than most. There have been times when Livi’s feeding tube has come out of her belly, left with a hole in her stomach leaking fluid. We then very diligently have to work to replace it. As someone holds their finger over the open hole in her stomach to stop the leaking, someone else grabs the emergency kit I made to have replacement supplies readily available. After grabbing the emergency kit and following protocol her feeding tube is then replaced. Then what? What happens next? I will tell you. The world did not stop turning, time did not stand still. We continue as we had moments before a medical emergency happened; cooking dinner, unloading the car, whatever it may have been. You keep going, fazed or unfazed.

We are normalizing our new life. Creating open conversations to discuss the good, the bad, the ugly, yet the beautiful that comes with raising children. All children. Recently my four year old was playing with her baby dolls, she was putting together “a cart” like the one I have. I have a cart I roll around our home that has Livi’s supplies on it for easy accessibility. Mia, our four-year-old, made her own cart for her baby doll. On her cart she had pads to go under the feeding tube, feeding tube extension, syringes. This is her normal. I try to explain to her that this is just our life. That babies are born different than others, how our baby is a miracle. She expresses “I know”, and then moves along to another topic, unaffected. Unfazed. She has made comments of how our baby is not strong like other babies she sees. I then tell her how different Livi is, sometimes I think it goes in one ear and out the other. Until later I see her on the floor playing with Livi. I exclaim how sweet it is that she is on Livi’s level and that Livi loves when she plays with her, as I am soon corrected. “I am doing Livi’s therapy!” This is Mia’s only sibling, this is what she knows of a baby. She does not care Livi is different, she is completely content being Mia, and having her sister be Livi.

I once was told I have two children on opposite ends of the spectrum. How true this is. Mia, my first born is off the chart, extremely advanced. Livi too is off the chart, just in the complete opposite direction. At each wellness visit you get a paper on a clipboard; it is a questionnaire to determine where your baby is developmentally at each age. It will list a skill or milestone and then you check either yes, sometimes, or not yet. With Mia the answer was yes, on every question, every time. On each skill I would be compelled to write descriptions too. It would state can she say 5 words? I would check the box marked yes, and want to elaborate on just how advanced her vocabulary was. I work diligently with both Mia and Livi, but in a completely different way.

Previously at each of Livi’s wellness visits the nurse would ask me a few questions, and after the third or fourth “no” or “not yet” there is a distinct change in my voice and demeanor. She then turns from the computer and faces me and asks “how is Livi?” I then boast with how wonderful she is. Her own kind of wonderful. Different than I had planned, different than I had ever expected. But indeed wonderful. I tell of the intense workouts she is doing, how her personality is beginning to shine. I could brag all day of how wonderful both of my girls are. Without milestones, without testing, just simply being themselves.

This is a testament to my own heart. To live without others approval or checklist of who I am, but live by being true to my own self-identity. As I undergo this journey Livi has brought us to, I am reminded daily with Livi’s nickname “Liv”, to do just that. To live and be our best self.

With Livi’s first birthday there was a day of reminiscing on the year we had. The year of some highs, but some very very low lows. There is a lot I do share of Livi’s life and how we transformed our hearts and minds like never before, but undergoing this transformation is no easy task. As a complex care mom, dad, or caregiver it is likely you too know of the struggles one endures as you adjust to a new normal. You can read between the lines of my struggles within this first year and really understand the depth of where I have been. There were times I would go into a spiral trying to figure out what I did for Livi to be born with her condition. Was it the recent vaccine I received? Was it the color dye in the Gatorade I had? Although I have been reassured over and over again it was nothing I did, one cannot help but ask why? I carried her in my womb. She was my responsibility. I ate vegetables and protein. I exercised as much as I could stand, while being nauseated and pregnant. What did I do? I can tell you; I took her life for granted. I never saw this coming, it would never happen to “me.” This last year I have underwent a radical transformation, from Livi I now see the world in a new way. I have made it to the acceptance phase, what a journey it took for me to get here. Not giving up hope, but accepting that she will be different. She will check the boxes marked “yes” on her own time. And in her own way.

Livi had her 15 month checkup today. It was one of the best checkups we have had yet. As the nurse began to ask the milestone questions, the lump in my throat appeared. I smiled lightly. A question was asked, I responded “no”. The questions continued, each followed by the answer “no”. Then, all of a sudden there was a question I answered “yes” to. Could it be? By the end of the questionnaire I had answered “yes” twice. At the beginning I was preparing myself, my heart to tell the nurse “like please don’t ask these questions, just mark no.” But today, today we answered yes. Livi is not only growing, Livi is thriving. In her own way, on her own time. But today, today was fulfilling to my soul. Our living, breathing, walking miracle.

“When I can’t see past the dark of night

Remind me You’re always by my side

You’re by my side”

-Sons And Daughers, by North Point Worship