In addition to Isabelle's bench at the MU Women's and Children's Hospital, the room where she was treated was also dedicated to her. When her grandparents and uncle were there for the TJ's Garden groundbreaking ceremony, they were able to take pictures of her room plaque for us.
While I'm glad they could be there on our behalf, I'm very glad we weren't. These pictures alone bring up emotions from the worst days of our life; taking me back to the hours and days when a mother's mind goes from believing in the best to being engulfed by the worst.
That door, the nurses desk outside the room, the space between when I asked the doctor on the first night after Isabelle had been admitted and was (in my state of shock) stable, "how do parents recover from this?" meaning nothing more than 'how do they recover from such a fright?' not doubting for a second at that moment that Isabelle would be fine. They were going to mend her - that's what doctors do. Of course they would... After all, I was playing with her in the yard that morning, she napped next to me that afternoon, she ate dinner a few hours before I stood in that very doorway... She was obviously going to be okay - this sort of thing doesn't just happen. It can't. Not to her. Not to us. When the doctor replyed, "At first it's the siblings that keep you going, then it's one day at a time, then one week at a time, and eventually it gets easier."
I was left dazed by such an answer. I remember laying next to Isabelle in the hospital bed after that, trying to make sense of it all. The reality just beginning to set in... Why the EMT responded "no, not always" to my question "she's going to be alright; people recover from this sort of thing, right?" when he was trying to clear her airways... To the doctor at St. Mary's Hospital in Jefferson City speaking to me as though it was a miracle they started Isabelle's heart again (in stark contrast to my thoughts of "of course you did")... To the nurse manually pumping oxygen into her lungs as they were preparing to helivac her to Columbia who, when I asked, said Isabelle's eyes were opening wide at times because of brain activity (small seizures), and I said "that's good right? brain activity is good" and she whispered "yes" in a manner that I now see was weighted in pity... To the security guard at the ER in Jefferson City saying "I'm sorry" as we raced out of the door to meet Isabelle in Columbia where she was being helivac'd, to which I defiantly thought "don't tell me 'sorry' - everything is going to be alright"... To being frustrated at the time by the number of friends and relatives who were boarding planes... * Why were they coming? Everything was going to be alright! Why others were crying but I was just waiting...waiting for her to wake up and be Isabelle again, waiting to get any amount of good news, waiting to understand why on earth our child seized, aspirated and had an arrest upon going to sleep (which we later learned via her autopsy that it was caused by a viral infection in her brain leading to meningoencephalitis). Waiting desperately to have Richard by our side... Everyone seemed to know the fate we were dealt - but me. This is one of the many discerning realities about shock, about experiencing the unthinkable. In hindsight it makes you angry - to know you were the only one believing in something that...wasn't. It wasn't until the following morning when I asked the nurse, "when will the medicine wear off?" thinking, or rather hoping, there was some kind of anti-seizure medicine being administered forcing her into a comatose state, who responded with heartache "there is no medicine - this is her." That was the first time I began to really absorb the gravity of our situation.
These pictures are about all I can handle as they so vividly bring up those surreal, horrific minutes, hours and days when the world as I knew it became no longer. And these pictures are the closest we will ever be to that room, on that floor, in that hospital. Ever, ever again.
Our gorgeous, strong Isabelle gave us two more days and nights to be by her side before she gently passed away in her own time as I was rocking her in my arms. I may never fully understand how this is our reality. I may never understand why bad things happen to good people. I may never know why that aggressive, fatal virus chose our adored daughter. But I do know that she was loved beyond measure and her life, as tragically short as it was, was a vibrant, happy life.
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* We were very grateful to be surrounded by friends and family. Friends from New York to Portland, from Hawaii to Chicago, from Arkansas to Germany and all places in between, dropped what they were doing, boarded planes or got in cars, and rushed to our side without a second thought. They filled my parent's home on air mattresses and helped bear the weight of our grief. Some took nearly exclusive care of our precious Sebastian while we were in the hospital while others went shopping on our behalf so we'd have something to wear to our daughter's Celebration of Life memorial... Other's cooked and others helped in who-can-count-the-ways.... And each and every one of them helped to hold us up in those very surreal, horrible, days. It is at times overwhelming how many wonderful friends we have in our life, who - no matter the time or distance - is there for us when we need them. You know who you are and we love you so much.