This beautifully written piece is from my mother. To gain her perspective, is to gain knowledge on the family compassion side of things. I only know what I experience, so to hear the same story in another form is eye opening. Hopefully it will be just as compelling for you...
The moment my granddaughter, Olivia, was born in September of 2019, after nearly 40 hours of labor, we were awestruck as this beautiful little one took her ‘ol sweet time entering this world. There were no typical cries to announce her arrival as she was placed in my daughter’s welcoming arms. Instead, my granddaughter lay there weak without a sound, with very little movement. Upon the routine examination, the nurse would raise her arms, but they continued to fall limp to her sides, exhibiting very little strength. Not long afterwards, the medical staff made the decision to have her examined by the NICU team, however she was returned to the birthing room shortly thereafter, with what seemed to be a clean bill of health.
The following day when family came to welcome this new little baby, she was then taken for labs where a NICU nurse passing by, had noticed the discoloration in Olivia’s lips and recommended she be given oxygen immediately. Sadly, Olivia spent the first month of her life in the NICU. This was only the beginning of what would eventually be a series of events that led to her current state of disability. It is speculated, while in the womb, that she suffered a severe HIE event (Hypoxic Ischemic Encephalopathy). The short version? A lack of oxygen which resulted in a lack of blood flow to her brain, subsequently leading to severe brain injury. In addition, they later learned that she also has a gene mutation which they believe is contributing to her seizure events, low muscle tone and global developmental delay. We would later learn, the chances of her talking, crawling and walking someday, were slim to none, just short of a miracle.
Little did we know, how different life would look, now that my precious little granddaughter was considered a special needs child. The numerous trips to the ER during cold and flu season and the handful of anti-seizure meds, pale in comparison to the day Olivia ended up back at the hospital in the PICU department with COVID in mid-July of 2022. I will never forget watching this tiny 2-year-old as she fought for her life and every breath that followed, even with the help of a ventilator. The most difficult moment was when the doctor had to obtain a verbal consent from my daughter over the phone, to allow them to hook her child up to the ECMO machine (a form of life support) by surgically attaching sizable cannulas in her neck. The doctor made it clear, she had little chance of survival and without this, she would die.
I listened as my daughter fell silent on the other end of the speaker phone. I knew then, tears must be falling as she made the most difficult decision of her life. Bravely, she consented and asked that even though she too was fighting COVID herself, if they would make an exception for her to see Olivia one last time, since there was no guarantee she would survive, even with the use of ECMO. The hospital graciously agreed.
I was allowed to remain in the room as they prepped my fragile little granddaughter’s body for surgery and then ushered into another room down the hall that was empty, where the “aloneness” surrounded my very being. The words of the doctor echoing in my head and the realization of how circumstances can quickly change, finally hit me. After the sudden reality that I could lose my granddaughter forever, I found myself crying out to God, begging for her life to be spared.
When my daughter arrived at the hospital at 3am, the memory and the pain of watching helplessly, while she stood speechless in front of her tiny child and witnessing for the first time, all the numerous tubes coming in and out of Olivia’s lifeless body, will never be forgotten, The month that my granddaughter spent in the hospital felt like eternity as we all watched and waited for a miracle, realizing we had little else to cling to. In mid-August, Olivia made a miraculous full recovery and was released to come home. Such an unexpected yet joyous moment for all of us.
In the 2 years following her recovery, my daughter and I had many discussions regarding the possibility of me leaving my job and becoming Olivia’s caregiver. The choice was not a difficult one as it broke my heart to see the countless sacrifices she made along the way, on her daughter’s behalf. The sleepless nights and the numerous trips to the hospital ER that sometimes turned into NICU stays, became her new normal. What troubled me the most, were the deep dark circle under her eyes that became increasingly evident of a life deprived of adequate rest. It was clear she needed some help.
In mid-May of 2024, I made the decision to transition from my job of 18 years at Valley Medical Center to being my granddaughter’s caregiver. I realized that it’s not enough to see a need, you have to be willing to meet the need. My only regret? That I waited so long.
As the question is posed, what motivates me to be a caregiver? Just knowing I have the opportunity to not only make a positive difference in my granddaughter’s life but also help lift the tremendous burden of responsibility from my daughter’s shoulders, is just the start to what motivates me. The choice to take on the role of caregiver was not a difficult one, given the circumstances that led us to where we are now. Olivia’s life story, coupled with the numerous opportunities to show unconditional love, compassion and patience in assisting her with her needs, are just a few reasons where my motivation comes from.
Over the past 8 months, I not only learned how serious and important this role is, but I am growing every day as an individual, through each unique experience with Olivia. I am truly grateful for each moment I get with her and seeing her light up as my daughter sings to her, “You Are My Sunshine”, makes my day. I find myself seizing every opportunity to remind her of how much she is loved and although her verbal skills have not yet allowed her to say “I love you” back, her beautiful smile tells me everything. A long time ago, I stopped asking why unfortunate things happened to my precious granddaughter, and started asking, “How can I help?”
