On January 21, 2008, I became a mother for the second time, when Isabella entered our world through the beauty of adoption.
Isabella’s journey with Alpha-one Anti-trypsin deficiency began at just 6 weeks old when her diagnosis was confirmed. There is no medication or cure.
Full disclosure: I am Isabella’s mother but have also worked as a Registered Nurse for quite some time. With that being said, pain wasn’t necessarily “new” to my life.
Unfortunately, our family realized fiercely that pain also derives and portrays its ugly head in other obscure cruel ways.
Fast forward to March 2020, when I was called into the surgery hallway following Isabella’s EGD scope with banding procedure. The surgeon had known Isabella since she was 6 weeks old, but I could sense something was wrong. And it was. Standing alone in this hallway I could feel my legs shaking and saw the doctors mouth moving as he explained “Isabella’s disease is progressing…I am very sorry to say she is developing portal hypertension, which in turn is causing all sorts of havoc, most concerning now Esophageal Varices. I don’t feel comfortable that you and your kids live in Bryan, OH, it’s too rural of an area if Isabella has a varice, it could hemorrhage and your hospital could not save her life.”
Ok. Fine. Boom. Done. We will just move. The 3 of us…I’ll do WHATEVER it takes.
His response “good…but even still, she needs a liver transplant…and she will probably have to wait.”
In that second every mentality or perception of any goals other than Griffin and Isabella did not matter the same. The focus shifted and I became almost obsessed about planning for everything surrounding “a future liver transplant that she may wait for years.”
And she/we did. We waited. For YEARS.
I had to obtain new employment, a flexible remote job to ensure I could be home to also take care of Isabella, and juggle my responsibilities as a mother to Griffin as well.
Fast forward: in August 2022, Isabella’s days were getting worse. She had progressed and now developed Hepatopulmonary syndrome. Her lungs were now in jeopardy, the Hepatic Encephalopathy a beast holding her hostage, and her brain was being deprived of oxygen. It was more than my 16-year-old son, Griffin, who was Isabella’s first best friend, my fiancée and my best friend, Ryan, or myself as her mom could watch her endure.
I remember some of those days being so heartbroken watching Isabella struggle to complete even the simplest daily tasks. Then it seemed like bad days were turning into weeks. I was petrified. Thinking “Lord…help me. My family is LITERALLY dying before my eyes.”
My mom heart crushed. My kids and their spirits I was also losing. Isabella rarely laughed anymore, rarely. Griffin started isolating… In my mind, greater than EVERYTHING, was the blatant fact that Isabella was running out of time…her body was getting tired, lungs and kidneys shutting down, and all this while Griffin was watching. I had to show him how WE fight. Both of them. So I did. And in front of my children, I hit my knees and prayed.
“Guys, this is how we fight now…”
I remember Wednesday, April 5…it had been nearly 9 months of this nightmare. I felt BETRAYED, defeated, drained…in the interim Isabella was unable to go to school, Griffin wasn’t plugging in, nothing was happening right, losing benefits, insurances, pharmacies, Ryan’s working so much overtime…
The noise was so loud yet my house too quiet. As the days went on, Isabella too became more and more aware of death. She even said “mom, I know I’m going to die if we can’t get this.”
On April 5, I laid my head down next to Ryan. We were praying, and I remember I was crying, and so so ANGRY. I remember yelling to Ryan, “I can’t even save my own, how could I not be able to save my own…what will Griffin think of his mom when she loses his sister, all of my relationships that matter, the only trust I need, gone…”
My thoughts just absolutely out of control. I was losing my grip on hope. It shook me because hope was all I had left. I just prayed “stop. Please just stop this all now!! I need you to fix my family and save us all NOW.” I have NEVER EVER prayed so specifically and…angrily.
God knew the battle with Alpha-one was burying my entire world…and these people, all of Ryan and I’s children, our grand babies…OUR world.
The next morning, around 6:16 AM, my phone rang: “This is Angel. I’m a nurse calling from Pittsburg. I am with the liver transplant team coordinating with Dr. Hashimoto at Cleveland Clinic…good morning and congratulations. We have an offer for your Isabella.”
What??? Her name is Angel? With a liver???
Yep. I declare to have officially been transformed into a blessing junkie!
The losses of jobs, absence of wages, houses, cars… it has been a task not for the weak. We have all felt EVERY pinch from the transitions that this horrible disease has caused, but especially Isabella. However, we are forever humbled at the ultimate sacrifice of our donor and his family.
Isabella, whom “god is her oath”, underwent a successful liver transplantation, with Dr. Koji Hashimoto et Al at Cleveland Clinic’s Children’s Hospital on the morning of April 7, 2023…how “divine” as it just so happened to be Good Friday.
Isabella is thriving and doing SO WELL!!! She and I remain in Cleveland for close monitoring, and we will have to be away from home for around 4-6 weeks, at best. Isabella has challenges we know she will face in the future. We are ALL still fighting for her full comeback story. We hope you will all join us while we prepare for the next chapter in her journey…
IT IS SO EXCITING to watch her plan, dream, live, smile, and LAUGH again. Thanks be to God that our family has more mountains to climb, and new memories to make now. To all reading about my world through Isabella’s journey…THANK YOU…this liver momma’s cup truly runneth over.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.