The Final Weeks

This is a story of incredible love, devastating loss, and a stirring of hope …

One year ago today the earth went silent for us. One year, 365 days revolving around the sun without Jordan on this earth. 365 days since I held him, brushed his cheek, or felt his breath.

It was February 5, 2018, Jordan’s final day of life. I was in utter shock and agony, and somehow typed out these words, “…we trust that God will provide beauty from his ashes.”

Those words were posted here one year ago, and I want to take a moment to thank my Facebook community for hearing me.

Since this day last year we have counseled, prayed, experienced, read, despaired, googled, you-tubed, mourned, fundraised, grief-grouped, walked, shared, we’ve nurtured raw and unhealing wounds, journaled, been lost, grieved, felt hopeless, been angered and confused, encouraged and inspired, isolated and lonely, supported and incredibly loved.

Yet…with all that effort we still bleed…openly, fiercely…we bleed…to delve deep today to my very core, I found an open wound remained abraded and raw. A year has given me time to wrap this wound ever so carefully and mute the pain ever so slightly. But today…I am compelled to undress it, let it feel the rush of cold air once again…heart racing, I am overwhelmed and panicked, the anguish there remains unchanged…and yet so much else has changed.

Those final weeks of life we had with Jojo were tenuous. It would take pages and pages to unearth all parts of Jordan’s story, but know that it started one day with a “typical” fever. Fevers for Jordan were actually not typical in that every fever carried the potential for a dismal outcome. In the past, we had been through many fevers and had recovered from much worse events. Jordan fevered for two days and was left with laryngitis and an abnormal breathlessness. Knowing what Jon and I knew, the possibility that he had experienced a viral brainstem assault was a devastating thought. As a parent, you FIGHT and HOPE for the life of your child no matter what the possibilities might be.

We were admitted and spent a week and a half in the hospital digging for answers, pressing on with hopes of finding a conclusion and securing a treatment. It is important that I take a moment here to express my utmost gratitude to the Mission and CHOC staff and physicians for their efforts, care, and compassion; we will always share a special bond with you. Understanding the complex inner workings of Jordan’s body is always an investigative journey, even for the experts. Test after test, scans, blood draws…Jordan’s acute change of health had far more questions then answers. 

Finally, through deductive reasoning, the pulmonary sleep specialist confirmed the life-giving, breath-signaling brain stem had withstood a significant injury to Jordan’s already compromised mitochondria. We were devastated, but not giving up hope. Would Jojo bounce back again from this virus like he had done so many times before, no one knew.

Gale-forced winds of prayers blew ‘round the world and we reminded ourselves, “God is good, loving and just, and ultimately sovereign.” Though our insides began to unravel, we held hands on the firm belief that we trust in God’s providence, provision, and care.

With heavy hearts, no treatment possible, and only the great unknown, we were discharged with a impaired brain stem. After a very brief stay back at home, Jordan’s body was clearly growing weaker, his breath more labored. Another ER visit and hospital stay would be our reckoning. 

Jordan’s oxygen saturation went from reasonable to a complete cessation of breath…there are no words to describe this traumatic experience. Modern medicine did afford us intubation and vent-dependent breathing. This gave us and his devoted brothers several days and hours of quiet, unspeakable and powerful moments with our precious Jojo…hand-holding, kisses, promises, prayers, hair locks, visits, handprints, questions, and heartbreaking protests. We NEVER EVER gave up hope.

Much anticipation, medical management, pleading prayers…the moment came…we gave Jojo the very best chance to succeed off the vent. For 90 emotional, brave, and inspiring minutes we were gifted his voice, his personality, his dreams, his desires….we as his parents and caretakers of his failing body emptied everything we had left to give him in that moment…over and over we told him how we loved him, how proud we were of him, and how we’d see him out front of those pearly gates(I told him he’s probably going to get a greeter position). 

With every sunrise, sunset, and starlit night we miss you our precious Jojo….your sweet spirit, your tender voice, and those beautiful eyes. Jojo, you are a one of a kind given to this earth but for only seven years. You will ALWAYS remain deeply embedded in our hearts and continue to inspire us how to live. You showed us how to be present in our moments and how to love profusely. The impact of your life holds a marked space in the hearts of so many, both young and old. This extraordinary impact on others has given me the view and gratitude to God for turning your ashes into something of beauty.

Thank you Facebook family for standing by us these past 365 days. Thank you for bearing our burdens, for sharing Jojo’s story and for strengthening us through your words of love and encouragement.

There is still much to traverse and much unknown that still lies ahead, but one thing is certain, we will be living like Jojo.