So the geneticist had given us the news, but what now? What comes next? He recommended Livi see all specialist to determine treatments. The first appointment to come was a brain ultrasound. As much as we all love Livi’s hair she had to have the “gunk” applied to her head to see beneath the surface. At this point, I was doing my best. Smiling, waving but wanting to go to the corner of my closet and cry. There were many nights a warm shower after an exhausting and emotional day would bring me to my knees. I would cry out to God, “why me?” He was preparing me for a life I had not imagined, a life before this moment I never thought would happen to “me”. There is more to come, there is more to life. When we see the one fighting battles others have never fought, it is there we see the immense strength in them. In return it brings us strength. This was the beginning of a change, a new life. What was happening and being unveiled to me was not a circumstance to overcome, but instead undergo. My husband Josh and I grieved at the same time, but our heartache came in waves. When one was down, the other stepped in, and stepped up, when it became too much to bear. To lift each other off the floor, the corner of the closet, or out from under the blanket; we did not realize the strength we had until our strength was put to test. Sometimes providing encouragement to one another and sometimes not saying anything at all. There were times when words could not be expressed of what our hearts felt. The days were long, the uncertainty would break a person. And almost did.
There were many mentors along this journey, people who had experiences of their own to share. People that did not, but were there to listen. One of my most respected is one of our grandmothers. Over the next few months our conversations became deeper and deeper into spirituality and self healing. “We will not put Livi in a box.” As in we will not let a diagnosis define her, she is more. “She was given to you and Josh for a reason. The care you give to her not many can, and the knowledge Josh can give is beyond others.” Every conversation I left encouraged, there was a purpose. Livi is ours, but more than that we are hers.
Time for the ultrasound results, Josh knew of the results and did not call. He came in one evening, eyes puffy. This was not unusual as we find time alone to cry and let go of some of the pain we feel. We were in the kitchen, as I’m sitting at the counter he states he has something to tell me. He continues on that it appears that Livi is missing part of her brain, the diagnosis is ACC. Agenesis of the corpus callosum. This is where tissue connects both the right and left sides of the brain, it can be missing either partially or fully. Her report stated it appears it is partially missing, and would need a clearer image of an MRI to determine. We tried to find comfort in every word in the report, every word the doctor said would be analyzed over and over until we had peace with each new diagnosis. The research began, again. Searching for comfort, searching for hope for our little baby, our miracle. Throughout this journey sometimes we found it, other times we did not. The word partially was there, well maybe it is not the part she needs! During our research we found that people had reported to have ACC and were labeled “normal.” There was hope, we found the word “partially” that we held onto until it was time for her MRI. The appointment with the neurologist was scheduled. Again, the wait continued.
We have all heard the statement, be kind you never know what someone is going through. And how true this is. We were walking through some of our hardest days, looks were deceiving. The change was starting within and it would not be outwardly expressed until later.
The next appointment was scheduled, ENT. Livi had a wheezing sound, or high pitched breathing. It was here we found out the soft tissue around her voice box was underdeveloped. This tissue would fall over and partial block her voice box causing stridor, or noisy breathing. It is often people think she has an upper respiratory infection, as it does sound like a typical cold, but again Livi is not our typical baby. Her lungs, hallelujah, sound clear. The new diagnosis was called Laryngomalacia. Ah a new word, a new diagnosis. “Laryngo” the doctors like to say. A word I could not even pronounce, and now it is a household word for us. Not only did Livi have this high pitch sound while breathing, asleep or awake, you could also see in her chest the struggle to breathe. There were nights we did not know if morning was coming. Her breathing was difficult, but we had seen the doctors. “It is Laryngo, she will outgrow it” we were told. As she struggled to breathe, remember she was also struggling to grow.
When someone asks what Livi has, meaning her diagnosis, it is not one, but multiple. This makes Livi a complex patient. As we began to navigate through her health journey we had to find doctors and medical professionals that were not scared of her, that never labeled her, but instead treated her for her. I envisioned her chart had a large red stamp on the front, “GENETIC ABNORMALITY” it would read. This would be told to us over and over again as the cause of her symptoms. Sure, genetics play a role, but we will not let that define her. When her symptoms were treated, and after each procedure she would undergo, a new baby was born. A new side of Livi came to life, and the joy this began to bring our hearts. Indescribable.
As I have shared before Livi was given oxygen immediately after birth and also unable to be awoken at the geneticist office, there is more to this as well. It was often we would say, “do you notice her color?” “Is she gray?” “Is she blue to you?” The answer was always, “yes when we are in this room”. In our living room we would regularly notice that Livi had a blue/gray color to her skin. Then the day came, the color was not a gray tone, not a little blue; she was blue. She would not wake up. She was not breathing.
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