The long awaited moment when baby Shu emerged, our world changed forever – HE Was born without a heartbeat or breath, he did not move or cry. Our son, Levi, had been born with severe brain damage. We were told by the Pediatric Neurologist he would not have the reflexes to clear his airway (suck swallow, gag, choke, cough), his quality of life would be very poor and there was nothing they could do to improve his situation. No medical reason could be given for “why” this happened. It was an understatement to say that Levi’s prognosis was uncertain.
Miraculously, after three long weeks in the ICU we had the opportunity to go Home. As first time parents now facing ICU-level medical complexities, we were elated and fearful to be home. We relied on our faith that there would be a hopeful outcome for Levi: a life full of love and joy no matter how long or short his life might be.
At 22 months of age during a routine clinic visit for Levi, one of our Doctors said to me, “Dannell, I am amazed that we are all sitting in the room today, that Levi is with us, and he is doing as well as he is doing.” In hindsight, at 22 months of age, I would say this was the moment when we could have shifted from running a sprint to running a marathon. Instead, we continued to run at a sprint, providing 24/7 ICU level care at home, doing everything we could day and night to give our child the highest quality of life possible, knowing that at any moment -whether we were with them or not – whether we were awake or asleep- that Levi could die in a moment’s notice.
Our friends at Crescent Cove have taught us, through living out their mission today with generosity and love, that there are key things a family needs to keep going: Respite in both the small and big moments of life. Thanks to Crescent Cove we have had a massage therapist visit our home to give Levi, mom and dad massages, meals delivered, a special trip on a firetruck, and a long weekend get-away.
We as a family have peace of mind that when Levi reaches his end-of-life, we will have a place to go (that is not a hospital) where his medical needs will be supported and we can focus fully on being mom and dad and savoring his final moments together as a family. We are one of thousands of families in MN who TODAY are living with a child with a life limiting condition. It is our vision that every family would have access to quality respite and moments of pure joy to help strengthen and sustain them to run this marathon with perseverance, and peace of mind that when their child enters the end-of-life stage, there is a place they can go and be together as a family. Together we can open this house!