AUG 23, 2016 marks the beginning of the year that changed our lives forever. It was the beginning of the most traumatic and painful experience we've ever had.
I remember the call as if it were yesterday. "Babe, Taya's gonna go home to pack a bag and take the baby to the hospital for monitoring." I was in a beginning of year training and decided to take that phone call as a welcome break from the monotony.
As I get in the car this morning a faithful tune is playing on the radio. "Thy Will Be Done" is a song that got us through the rough times when the K-Love radio station played 24/7 in Brooky's room. When we couldn't understand and didn't know if Brooky would make it to the next morning.
That is the day Brooky looked like the cutest little swollen chunky baby. So swollen she only had slits for eyes. Unbeknownst to us, what seemed like just some extreme weight gain, was actually the first signs of her organs screaming out that they were in the process of shutting down.
It's the day Sheldon was so excited because he was actually able to join Taya at Brooky's doctors appointment. I was at work and received this picture as a teaser via text that morning.
We banter back and forth about who gets to spend time with the grandkids, so this was not out of the norm.
Before the appointment ended, the cardiologist calmly told them to get the baby to Children's hospital just to be sure everything was OK. Our cardiologist is such a professional when it comes to not inciting a riot when there is actually a need for one. This is the same doctor who, after looking at the sonogram, calmly called to tell Taya she'd like to have the baby induced, on July 13th. No shock and awe, just a calm 'pack your things and make your way to the hospital.'
I know now she recognized the dire straits we were in, but didn't want us to panic or go into shock.
Once Brooky got to the hospital she was taken to the Cardiac Intensive Care Unit which was said to be 'normal procedure' for cardiac babies (if only we knew then what we know now).
Our thinking was we'd be there a couple days, get medicine, get better and go home. Sadly, this would be so far from the case.
Well things became worse as we learned the swelling was abnormal and they wanted to watch it.
As we look back we remember Brooky spent much of her first month unable to hold food down. Many babies do this and again we thought (at least every one except Dude) it was totally normal. She would literally get rid of everything that went in one way or another. Well this was the first indicator that her intestines were slowly dying because her weak heart was not able to send an adequate blood supply to her other organs.
We were then informed that she had to have surgery on her intestines and they slowly removed all but a little less than 10% when it was all said and done.
Soon we were told she would not make it. That we should gather family and prepare all the resources necessary for her impending passing.
We got to know Dr. Scott and his team (palliative care) so well we were on a hug only basis. We were unaware of the fact that his only purpose was to help families through the grieving process as they lose their baby. The statement he makes that always stands out for me is "Brooklyn is the talk of all our meetings because no one understands why she's still here."
Many of you have joined us on this journey so I am not going to rehash everything, but I will say this is an extremely emotional season.
We walk the tightrope of mustering the effort it takes to go to the hospital every day, but loving that little face so much that the minute we turn the corner to her door (wherever it may be), all that dread and frustration melts away.
We have wondered what could be the purpose of the pain she experiences. We know now that the many stories of nurses, doctors and hospital staff that have deemed her a miracle versus a medical success is a start. We hear the stories of the reignited faith, the return to church and the overabundance of prayer from everyone including people who have never prayed before. The stories that humble us and bring us to tears when we think of this year and all that has transpired that we can't put into words, even if we wanted to.
So with all of that comes the ask. We have declared August 23rd (and every day following that Brooky is here to celebrate) as Brooklyn's Healing Heart Challenges Random Act of Kindness Day.
We'd love for Brookys story to help others, and in the words of Dude (Sheldon Sr),
"I keep asking God to heal Brooklyn's heart and the heart He keeps healing is mine".
So use your random act of kindness to heal someone's heart today.