Tick tock tick tock tick tock – remember that clock? That was the endless countdown that was going on in my head as the minutes ticked closer to transplant. I simply have that clock going on now but with the opposite impact – we are moving AWAY from the big transplant date! Can you believe we are celebrating 3 months post liver transplant – 3 months! 13 weeks! 91 days!
Let me explain why THIS 90 days was such a HUGE milestone to me.
Many of you have asked how I have made it through this time… I have decided to share with you some little things that have helped me as we maneuvered through this in hopes that it may help you along the way of your journeys as well…
KNOWLEDGE is CONFIDENCE
At the beginning there were so many things we did not understand… Diagnosis = Biliary Atresia (what the heck was that?) to CURE = transplant (ummm we KNEW the definition of this but WHAT??) – I was thirsting for information on everything what was the disease? What was transplant?
The Cleveland Clinic Children's staff AKA the EXPERTS were and still are SO helpful – they were patient and informative and the docs even DREW me examples and worked through scenarios, they gave me statistics and numbers. They told me things and I listened, I journaled, I captured the words, theories, philosophies, phrases… Often I had to think through that night after or the next morning to understand and comprehend everything we were dealing with. I would go back and ASK MORE and more…
A wise man – Dale Carnegie once said “Get ALL OF THE FACTS. WEIGH all of the facts. Then COME to a DECISION.” Thank you Dale Carnegie – thank you. (https://www.dalecarnegie.com/assets/…/Secrets_of_Success.pdf) And that is what I HAD to do to get through - be non-emotional and very focused on WHAT we were dealing with.
After I started getting a handle on “IT” I thirsted for more. I needed more. I needed to pacify the agony of the unknown and get my hands wrapped around what the “technical side of this information” and how it translated into “real life”.
I needed the internet in a way I had never needed it before. I was afraid though because as we all know as great a tool the internet is others have created it to act as a weapon with false info, bogus claims that were falsely created, there also were true stories that did not have happy endings (I had to pick and choose when I read through those) I had to be defensive for my own good in what I allowed myself to engage in…
In our day and age, we have the gift of being smack dab in the information generation and Social Proof is everything. I needed to find people (real people - no catfish please) who were going through or had gone through this journey.
I needed the pioneers to share what their journey was like so I could know the highs and lows the scaries and the celebrations. And combing through the internet I found quite a few Mamas who had children that journeyed through liver transplant and they painted light and began to illuminate color on my blank canvas of what life moving forward was like. (I was so pleased and relieved to hear their stories – more than any of them will ever know)
One Mama I was pointed from our tribe was just a 4-hour stretch south of me in Cincinnati. She and her daughter Bea had just gone through the same thing we were embarking on – she bravely and courageously donated her liver to her daughter – successfully. She kept a blog (http://www.make-statements.com) through their whole experience sharing everything transparently with honesty
There was another mama that someone in our tribe connected me with who had two little boys go through this – TWO.
These brave women shared pictures, words, videos, emotions, statistics, medications, everything – I scoured their blog and emails hanging on their words and inspecting every picture listening to their emotions and stories – I am happy to say all of the kiddos and families are doing great!
These Mamas had given me a gift - exactly what I needed: information, details and hope.
I had emailed Hillary (Bea’s Mother) with questions the day before I was to find out if I was in fact a qualified match for my little man. They were almost exactly 3 months ahead of us on their own journey.
She said this to me in one of the emails “If I could tell myself 3 months ago that we would be where we are now - it would have eliminated SO much doubt and worry. Everyone's journey is different but I want you to know that I am starting to see the light and Brodie will be there soon too.”
So that was on my list of goal – 90 days out. 90 days out. 90 days out. If we can make it 90 days out, WE can do this. We can and will do this. AND WE DID!!!!!!!!!!!!! Here we are.
Knowledge is Confidence. When you are dealing with something – anything – get the facts (from reliable, trustworthy sources), weigh the facts – and continue to use them as a source of strength. Continue to pull courage from what you know. That confidence – that SWAG is what you need.
Whether it is walking into a Medical Appointment, pitching an idea at work, trying to make a decision for yourself, child or parent – make sure you know what you are dealing with.
Get the facts.
Reach out to others who have done this – have an open mind – listen to what they say. Then you choose – what you will arm yourself with. Your choice what to focus on. You decide.
“Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go Out and get busy.” Dale Carnegie
I cannot agree with this more. Knowledge give you confidence. Confidence destroys fear.
Big, little, medium, life threatening, daily, work, personal challenges all come at us sometimes all at once, sometimes one at a time. They all take us to have courage, patience and reach within to figure out what our best options are – for us.
I cannot tell you how many times I went back to my notes, emails, blog, pictures and repeated – we can and will – we can and will – we can and will – and here we are – WE DID AND WILL CONTINUE!
So be brave BGVT Warriors – be brave – on your challenges give yourself 90 days and make sure to look back to see how far you have come. You will be amazed!
XO - TT