Thank you to all of our readers for continuing this journey with us. A journey that was unexpected, difficult to begin, hard to envision, but our story. After Livi was born a poem titled “Welcome to Holland” was sent to me by numerous people, this poem has helped me overcome my own expectations of life. It states that having a baby is like planning a trip to Italy. You plan, prepare, and pack for Italy. You board your flight, but it lands in Holland. You are devastated as you did not plan, prepare, or pack for Holland! But once you look around Holland it is its own kind of beautiful, slower paced with lovely flowers. You must learn a new language and make new plans in the midst of navigating an unfamiliar territory. You cannot mourn that you did not make it to Italy or you will never enjoy the beauty of Holland. An unexpected and unplanned beauty. Different, but indeed wonderful. This is life with a disabled child. As I lay in the hospital birthing my “normal” child, my plane soon landed in Holland. I was completely overwhelmed, my plans were changed and I did not even speak the language! Ah, why would this happen to me?! My A type personality was shattered to the core; for many months I was picking up the pieces, making new preparations and new plans. In this journey with Livi we have learned quite a bit as we move at a slower pace, meeting people we would have never met if we did not “land in Holland”.
We recently seen a new neurologist, as he is reviewing Livi’s geneticist documents he describes how it is hard to tell what Livi will be, as her diagnosis no one else has. Stated in her chart as “not documented, not in the database.” It is not common, or even uncommon. It is unknown, uncharted. Once he read the report from the geneticist he turns to me and says, “he did not expect her to survive.” What once would have caused a lump in my throat I now boast with confidence. No he did not, he did not expect her to survive. The geneticist was surprised she survived birth, stating since she did he did not expect her to survive life onward, and if by some chance she beat those odds he did not expect her to have a good quality of life. Livi is breaking barriers, she is shattering words. Livi is living, breathing, and one day will be a walking miracle. I speak this into existence. I work tirelessly to give Livi the “quality” she was never expected to have. Livi is an angel living amongst us. She is teaching us the true meaning of life, how to be patient and humble, and how to love without words.
We love Livi the way God made her, the world may call it imperfections but we call it beautiful. On one of our recent hospital stays the nurse comes in for shift change, she is to review Livi’s chart to begin her care through the night. One statement she said was on my mind for days to come, she said “and I read she has a genetic problem.” She was quickly corrected to “genetic abnormality.” Livi is not a problem, she is an anomaly.
Just because Livi is not physically curious does not mean she is not mentally capable. Livi is living proof to not judge someone. At first glance you may see an incapable baby, but upon time spent near Livi you begin to notice all the little things she can do. We celebrate milestones of course, but we also celebrate inchstones, which are smaller movements and developments. There was a time when Livi was a newborn I was taking a photo of my husband, Josh, holding Livi. Josh is not one for photos, so he did not want pictures taken. He was tired and laying back with our baby. I responded with “this may be all we have one day, a picture.” As tears welled in both our eyes he agreed to the photo. I was not taking this photo for social media or to send and show everyone, I was taking this photo for me, for us. There were many days we were uncertain how much longer we would have baby toes to kiss, a face to wash, a back to pat. Remember it was a miracle she survived birth, and since she did she was not expected to survive life itself. Those were the doctor appointments we sat through and endured. Our baby is a miracle, our baby is an angel on earth. And we, we get to be her parents.
Where is Livi now? Livi is rolling, holding more and more sensory toys each day, grunting and laughing. She wears leg braces to help develop proper alignment of her feet. She will soon begin learning to stand. The inchstones, those are what we celebrate every day. Livi no longer uses any medical equipment at night. When once she would not drink half an ounce, she is now drinking three while propping her hand on the bottle as to help hold. She is still learning to sit unassisted, but improving each week. I once said “Livi can say whatever she wants, as long as she talks”, I may very well change my mind on this as she has quite the spunky attitude. This attitude is one of a fighter, a survivor. To battle breathing and swallowing intolerance one must be strong. Livi, is living a life uncharted and we get to document the record. How amazing is that.
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