The St. Louis Children's Hospital
St. Louis, MO
About a week ago, Gracie and I went to happy hour in the lobby of our hotel. There were two adorable little girls playing together who looked a little older than Gracie. Gracie asked me if she could play with them. I told her to go over to them, use nice manners and ask them. So, Grace walked over and said, "Excuse me, may I play with you?" I overheard the older of the two girls ask (with the most adorable British accent), "Did you ask your Mum?" Grace just stood there. Who??? My what?
After we cleared up that Gracie's Mum did indeed say she could play with them, the kids were off playing hide and seek. We have since come to learn that their names are Olive and Olivia and the two of them have become friends while staying at the hotel over the past 3 weeks. They both have siblings who have been diagnosed with Cerebral Palsy and recently had surgery at the St. Louis Children's Hospital only a few minutes from our hotel.
Anyway, let me go back to playing hide and seek with the kids. After a while, the girls became bored with hide and seek and Olive asked me if I knew the sleeping bunny song. Of course I do! She asked I if would sing it so the kids could play. Of course I will! If you don't know the sleeping bunny song it is quite silly. The children lie on the floor pretending to sleep while you sing a little tune and then you yell, "Wake up bunnies!" and they hop around the room like crazy bunnies. So, we started playing and as children often do, they wanted to play again and again and again. After a few times of playing, more children started to join us; Willow, Ellie, Hari, and Ellis. They all have Cerebral Palsy. Hari was able to walk over to us ( I just found out that since his surgery this week he was able to walk for the first time unaided and he's only a little older than Grace), but the other three crawled. They weren't able to hop like Gracie, Olive, or Olivia, but they held their own. Willow and Hari held onto a chairs, while Ellie hopped on all fours. Ellis just liked singing along. I was in awe at what just a silly, little song could make happen. I had never experienced anything quite like it. All 7 of the children, with all different abilities and disabilities and at all different stages in their lives, were able to play together because of music. It was beautiful.
We were lucky enough to get invited to Olive's 5th birthday party as well. It was a lovely, princess themed party complete with a tattoo station and British party games (Musical Statues and Pass the Parcel).
Over the past week, I have learned a lot about these families and what they have all been through. Most of the families that are staying at our hotel are from the UK where Selective Dorsal Rhizotomy surgery isn't offered. Dr. T.S. Parks of the St. Louis Children's Hospital has refined and studied the procedure more extensively than any other surgeon and families from all over the world are flocking here to have Dr. Park perform the surgery. Obviously, the families must do some serious fund raising due to the medical fees, travel, and housing here in America running the families at least $70,000. The surgery lasts about 4 hours, after that the child is immobile for 3 days and on day 4 they begin intensive physiotherapy. One of the mom's here told me that after the surgery it's similar to a baby learning to walk for the first time, it takes about 12-18 months for them to build up enough strength to walk unaided. It's amazing to me that a lot of the kids here arrived in wheelchairs, some having been told they'd never be able to walk, and a few weeks later are able to walk out of the hotel holding their mom's hand.
Olive and Willow headed home a few days ago and Olivia and Hari left this morning. Grace, of course, was sad to see them go. Fortunately, they gave me their info before leaving so we'll be able to check in on them once in awhile. It has been extraordinary meeting these wonderful people.
