We went to our first clinic in December and they set us up with a local place and covered Alyssa’s leg braces, but beyond that they continue to follow up with us. Today was the first follow up. It is an astounding thing to be surrounded by people who are all there because they *want* to help people not because they have to. Each of the Shriners gives their time, talent, and education and does it with a happy heart. There are the lovely Shriner’s clowns and just an overall positive atmosphere. The wait times are a bit …ok a lot… longer than a typical doctor’s appointment. However, the wait is worth it.
In December Alyssa was still very squarely in her phase of being terrified of anyone with a hat…which made a trip to the Shriners… well… interesting ;). This time she did quite a bit better. She even did well with the clowns. Well, mostly did well with the clowns. One of the clowns asked me what was ailing her and I said “It’s a disorder called IP.” To which he replied “Oh, what does IP stand for?” … I chuckled a bit and replied “Incontinentia Pigmenti…. yeah… IP” and he laughed out of nowhere and scared her. So, she cried for a bit but luckily the woman who set us up back in December recognized her and came over with a book to distract her.
We played for a while and the most endearing little girl was talking to Alyssa… in Spanish 🙂 . It’s amazing to me how a smile can cross all language barriers. The little girl was so kind and gentle and asked me why Alyssa wasn’t talking to her. I explained that she didn’t know how yet. Alyssa had gotten a little kitty balloon from one of the clowns but this little girl had run around and gotten a bunch of balloons. She turned to her mom and said “I have a bunch of balloons. I’m going to give her one.” (in Spanish of course 😉 ) She handed Alyssa a balloon with the biggest smile and ooooh the squeal of delight 🙂 . After a bit more play the little girl ran to go hug one of the clowns to get herself a sticker. She saw how entranced Alyssa was with the bright orange sticker….and turned to run back to the clown. When she returned with a second sticker in hand Alyssa was nothing but smiles. It was so astounding to me that one child who didn’t speak and one child who spoke a language that the other rarely hears could communicate so well.
By the end of the afternoon we discovered that Alyssa’s braces fit well and her bones seem to be growing appropriately! Hopefully with some extra physical therapy and working on getting her a gait trainer we’ll be able to get her some more time on her feet. She came home plus a few heart-warming tales, a couple of balloons, and an adorable little tiger. A big huge thank you to the Shriners for all you do 🙂