We're back- and bigger and better than ever.
Last year, we set our goal to $700- because in Theo's words, he was "seven, duh".
This year, when I asked him his goals, he confidently hit me with "TEN THOUSAND DOLLARS". And so, we've set our sights high, and decided to shoot for the stars. Last year I was, once again, left speechless by the overwhelming outpouring of love and support. When all was said and done, we had raised over $3,000.
If you know us, you probably know our story.
If you're new here, we became part of the UPMC Children's family in March of 2020. Theo, who is now eight, went to sleep on the night of March 16th like any other four-year-old, and woke in the early hours of the 17th with stroke like symptoms.
In short, his left frontal lobe contained an arteriovenous malformation that had ruptured and bled out. A series of scans showed that he had a cluster of unruptured aneurysms still intact within his left frontal lobe. Theo was placed into a three day long medical coma until his brain was stable. Our plan was to stay in the NeuroICU for two weeks, undergo surgery, and then recover.
However, lockdown set in and the ORs closed. We learned that surgery was off the table, and with a 25% risk of rebleed in his brain in the first six months post-hemorrhage, we would have to take Theo home and just wait.
So we did. We just waited. I kept a pulse oximeter on Theo and tracked his vitals on my phone. I stayed up until 4 am every night, then woke Karl up so we could watch him sleep in shifts.
Finally our call came- May 12, 2020- two days after Mother's Day, Theo would have a resection of his left frontal lobe. I woke the morning of surgery after little sleep. I pulled a still dreaming Theo from his bed, and in the stillness of the dark morning, laid him in my lap. I took selfies while he slept on me, his head heavy on my shoulder like he often did in infancy and toddlerhood. I took way too many selfies. Looking back, it looks unhinged, but I knew that I was glaring straight into reality with the knowledge that these may have been the last photos I ever had with him.
Due to covid restrictions, only one parent was allowed in the hospital. I prepped Theo for surgery with the sterile wipes and dressed him in his panda bear gown and mask. I signed waivers and reassured him, but really reassured myself, that we'd be okay.
Surgery was supposed to be six hours. I waited seven. Eight. Ten. Thirteen hours later, he was ready for me. He had suffered a stroke during surgery, and it had become sickeningly real to me that every one of the "that won't happen, he'll be fine, mom" sections that I signed in his waivers were more terrifying than I could fathom. We were in it.
But recovery was beautiful. It was as flawless as it could have gone for a boy who just went through everything Theo had endured. When he was able to get out of bed, we walked to the sunroom for meals. We ate popsicles and counted dogs down below.
Everyday continues to be a part of our healing journey, inside and out. We continue to learn and grow, and when I say Theo is our hero, it is no cliche- it's our honest to god truth.
This is our big why. I could never truly put into words where we've been, or where we're going- or how the hearts and souls who have loved us through it have made this whole, wild journey possible. We could never do it alone,