“Thadvocate”

Without further ado, allow me to introduce “Thadvocate” ❤️

What are we doing and why are we doing it?? Fair question. Answer: we are advocating (i.e. STANDING PROUD AND FIGHTING FOR) for our precious Kieran (a.k.a. Little Thad) by encouraging all to join our commitment to helping other families find the strength to “thadvocate” for the best interests of others.

ad·vo·cate

noun

/ˈadvəkət/

“A person who publicly supports or recommends a particular cause or policy.”

Unfortunately, Webster didn’t define how exactly the parent of a medically complex kiddo is supposed to take on the role of being an advocate; nonetheless, we have learned the ropes (sort of), and the catchy little phrase we came up with to describe being a ‘Thad’ ‘Advocate’ is, you guessed it,… Thadvocate!

Let me throw a little background on ya:

Shortly before Kieran was born in September 2016, he was diagnosed with a heart defect which resulted in an unplanned early birthday amongst unfamiliar doctors (followed by a short stay in the Neonatal Intensive Care Unit). His health circumstances sent us home with some technology that let us know when his ticker wasn’t “doing its thing.”

On Christmas day 2016, Kieran was admitted to AAMC due to several serious respiratory infections. After being flown to Children’s National Medical Center, he suffered a cardioresipiratory arrest during his stay in the Pediatric Intensive Care Unit. The time period that followed was full of trials and tribulations, ups and downs. But seven weeks and four hospitals later, Kieran finally came home in February 2017. Months later, an MRI revealed that Kieran had a brain abnormality, thought to be a traumatic brain injury due to a lack of oxygen to his brain during the cardiac arrest. While he is still currently considered developmentally delayed in a number of areas and his medical team cannot definitively predict the extent of what his limitations will be long-term, he has made great progress in therapy and shows an indescribable determination towards continued forward momentum. After exhausting a number of avenues for diagnostic testing, we came to learn Kieran’s encephalopathy (brain damage) was not actually a traumatic brain injury from cardiac arrest; rather, it is one of many complications associated with the underlying disorder of his central nervous system.

Kieran has several ‘secondary’ medical diagnosis and these, in conjunction with chronic respiratory illness, have made his experiences with sedation a challenge; however, he has successfully undergone multiple procedures to correct various congenital birth defects.

Unfortunately, Kieran has not been able to eat or drink by mouth since May of 2017. After a Gastrostomy tube placed in August 2017 proved insufficient, a Gastro-Jejunal tube was placed in January 2018. Kieran currently receives continuous nutrition, 18 hours a day, directly into his Jejunum (the largest part of his small intestine). Numerous un-avoidable hospitalizations have delayed or derailed Kieran’s treatment plan. That said, we remain hopeful that he will soon be cleared to participate in another intensive rehabilitation program with the best experts in the country. For now, Kieran will continue to receive services from several in-home pediatric care providers until such time as he is deemed stable enough to embark upon the next phase.

We would be lying if we said we aren’t scared of what the future may hold or what challenges Kieran may be faced with as time goes on. Nevertheless, there isn’t a day that goes by where we don’t pause and reflect on how truly blessed we are to be surrounded by family, friends, neighbors, co-workers, and others who encourage us to never stop fighting for this boy who DESERVES a long life full of love and happiness. We credit our extraordinary support system for giving us hope, positivity, and, quite frankly, the inspiration we need to stay strong [never allowing fear and emotion to overcome us]. From the bottom of our hearts, we are so very thankful and we are forever in debt to those who are sticking with us along this ride.          

So… what is “Thadvocate”??

It’s not a person, or a place, or a thing. “Thadvocate” is our way of life. It is our dedication to pushing back when the medical world suggests we ‘transition to support care’. It’s how we label our commitment to finding obscure resources that are out there for families trying to navigate a better way of life for their special needs child. Thadvocate is how we describe SPEAKING UP for Kieran’s best interest, and extending our efforts into something far greater than “accepting” the day-to-day struggles — Thadvocate is how we DO SOMETHING ABOUT IT.

I have invested nearly 16 years with my career in the Federal government. I am incredibly proud of what I have accomplished in my professional life — so, it was only fitting that our first born child, Noli Rowan, was born on June 23, 2013 [the 10 year anniversary of my entry into a life of supporting the fine men and women who fight for our freedom in the great U.S. of A.].  

Closing in on two decades of dedication to civil service, the love I have for such an important role in my life will always be my first ‘baby’. While I have enjoyed watching that particular part of my existence continue to grow and flourish, the welcoming of Noli [and subsequent pride of having Kieran join our story], presented an opportunity for realigning my goals (all the while keeping true to serving my country).  

On that note, many people don’t know that I handle parts of the “ugly” side of Federal government HR. I spent roughly 12 years in operational ER (meaning, I was the ‘bad guy’ executing disciplinary and adverse actions) taking away the ‘livelihood’ of other employees. I transitioned to a policy office not even 2 weeks after Thad and I married in 2015. It was only a few weeks later that we mourned the loss of our second pregnancy.

Between digesting the grief of losing our baby-to-be, settling into my new professional role, and attempting to play a cool, calm, and collected Mom to Noli, God somehow found us worthy meanwhile to be blessed with Kieran’s conception.  

Some days I feel like I have moved past that intense hard time of our lives. But many days, especially when I am sitting in silence, I feel presence of the angel we lost now sitting right over my shoulder. At first, it only brought me sadness. But lately more than before, whenever I am lucky enough to feel that precious soul around me, I’m comforted. That child was born to heaven and watches over us (and Kieran especially) every day.

Thadvocate is not a mission to raise money or solicit ‘sponsors’ for our cause. We simply wish to empower special needs parents (and their support system(s)) as they continue seeking strength and help amidst hopelessness looming. Little Thad is still here – he is fighting – because he has an inordinate network of folks rooting for him.

To any of you barely hanging on by a thread, feeling lost or overcome with grief, and/or perhaps contemplating giving up — I beg you to NEVER STOP FIGHTING. “The only battles you can consider a loss are the ones you don’t fight.” And, even if/when the time comes for you to navigate finding peace following a well-fought battle that came to a close, you should hold your head high for never giving up. Accepting transition to the next step (whatever that may be) should never be perceived as failure; rather, it is a chance to pause, appreciate, and applaud your passionate efforts, allow yourself to heal, and then embrace the next phase of your life’s gifted purpose.

Whatever grief you may be dealing with, find solace in knowing you are lucky enough to have found a treasure in life special enough to care so deeply about. **That is what “thadvocate” means — having something WORTH FIGHTING FOR, mustering up the strength to FIGHT FOR IT and making it your mission to HONOR that blessing, whatever road it may lead you down.

xo,

“Mom and Thad-dad”