WACKY: absurdly or amusingly eccentric or irrational.
Here we are two nights away from the girls' first Myozyme treatment on Wednesday, April 28th. From now on they will receive treatments every other week...forever. Yes, that's forever with a capital F or as my Latin speaking friends would say "ad infinitum".
While we are tentative to take this next step; we are looking forward to what awaits us. You see CHOP has developed creative ways to make their Day Medicine clinic (where the treatments will be held) a positive and fun environment. There is Musical Monday, Tiara Thursday, and for us Wacky Wednesday. So starting this Wednesday we plan to have the girls wear, share, act, sing, watch or just generally do something wacky during their treatment day to maintain a fun, upbeat spirit.
Now I know a thing or two about being wacky. In fact, I have been both complimented for being wacky and punished for being wacky. The latter mostly occurred back at St. Dominic Savio where Sister Superior just didn't seem to care for kids being wacky. Who knew? For the record, my bride is not new to wackiness either so our joint experience has provided us with a few ideas. And fortunately we have our fair share of friends and family who also fall into the wacky category, but for their sake I won't name names. Those who are smiling now, you know who you are.
So nearly a year after we took Maddie to that first doctor's appointment, five months after her diagnosis, and three months after Emma's diagnosis we are taking that next step in our New Adventure. While I know we are blessed that there is a treatment which will stabilize the girls' situation, I sit here with butterflies in my stomach and a prayer that somehow I could still take it all away before they feel that first needle prick and the rush of the medicine entering their blood stream.
I am not sure what our family will feel at that very moment, but am sure there will be a few smiles and a few tears. I am also sure that somehow we will remember that it is Wednesday and as such, we will find a way to be Wacky.
All the best and many thanks,