One year ago we were visiting the hospital and our sweet Addie Leigh after a hectic day in airports coming home from my sister’s wedding in Seattle.
At the time-one of these nurses had a tiny human, One was cooking a sweet baby, I was in the middle of a chemical pregnancy, and two of them were just being awesome.
Today…one year later…Addie Leigh is done with hospital chemo and almost done with treatment. My sister has been married a year. The tiny humans are basically grown up, two of us now have perfect baby boys born 3 days apart, and another has a new blingy ring on her finger! And we are all still being awesome. (Obviously)
But time has gone on. As it does.
It may seem weird or morbid to miss them and I miss life at the hospital but….it’s where I see my baby. It’s where I walk where she walked and get to hug people that love her and us.
The people that held her and held us. The only people other than us that know just how brave my girl was…they know every aspect of those 8 months of our lives because they were there. They didn’t read about it on Social Media. They didn’t get text updates or secondhand stories. They didn’t try to make us feel ‘normal’. They didn’t avoid us or get uncomfortable around us. They witnessed just how sick she got and just how disabled she was.
They lived it with us everyday for 232 days. And I miss it.
I miss rounds. I miss keeping up with the Beads of Courage Journal. I miss writing everything in my notebook. I miss asking for meds and helping with therapy. I miss the terms that were part of my daily life. I miss unhooking the feeding tube and changing the sheets. I miss cleaning the room with alcohol wipes. I miss weighing diapers and hoarding bath wipes. I miss our walking route on the 6th floor. I miss catching up with whoever was on each day. I miss our techs, PA’s, NPs, and nurses. I miss Dr. Watt and Dr. Slone. I miss wagons and wheelchairs. I miss mouth swabs and diaper cream. I miss blood work printouts and medicine schedules. I miss gloves and hospital grade hand sanitizer. I miss the pink fuzzy pillow and the stack of clean blankets we changed out daily. I miss strawberry water and the best tator tots ever. I miss Princess Bibs and Minnie Mouse Hospital gowns. I miss the trains at Children’s and the stars on the ceiling. I miss massaging tiny feet and rubbing a fuzzy head.
I even miss the stupid talking elevators, beeping IV pumps, and sleeping on an egg crate.
I miss being around people who truly got it.
Most of all….I miss my sweet Sophie that all of these things revolved around. Everything about her…even the hard stuff because she was still here.
But just like this picture….time has gone on.
One year, 9 months, and 6 days.
Time without her and time away from life at the hospital that felt so normal. That time was so hard. So uncertain and so stressful but it’s part of our story. It’s part of who we are. And in a weird way, I love it. Just like I love these 4 (and SO MANY MORE on CCBD) and I love reminders like these of time spent with them.
Because ultimately these reminders remind me of my girl.
My brave brave girl.
And I can’t wait to take her little brother to this place and show him where she walked and all the people who love her too.