Despite 2 or 3 ER visits for fevers/minor illness, some weird labs mandating numerous consecutive blood draws and a lot of worry on my part, regular clinic visits, regular blood draws, twice daily anti-rejection medication, a weird but resolvable period of time balancing LuLu's Prograf level and liver enzyme numbers- (that was a mouth full) we have had a phenomenal 16-month stint without being hospitalized. (high kick, toe-touches...GO LULU!, that hurt my groin because I am no longer a flexible cheerleader like I was 13 years ago- but she deserves a little cheer)
I never could have imagined we'd actually go more than several weeks or a few months without the interruption of a hospital stay in our lives. It has only been the past few months that I'm finally no longer waiting for the other shoe to drop. Maybe we will ride this wave for quite sometime before it crashes and we return to Primary Childrens Hospital, IV's and solitary confinement in the ICSU, I ought to just enjoy every minute until then. And, I am. It's been a rewiring of my brain not to think of every move we make in terms of "LuLu could get sick...if we-________" fill in a very normal, outside of our home activity such as a movie in a theatre or the aquarium. I know she really was given a literal second chance at life the day she was given Ashley's liver- and I have to let her live. (have to, have to, have to...note to self) I don't plan to home school, (which I would totally suck at anyways) she is in traditional preschool---and it's the traditional path we plan to stay on as long as we possibly can. She's in her second year of ballet with her best little friends and it still feels like a blessing from above every Tuesday as we gear up for dance. We've gone to movies in theatres, museums, the zoo, vacations, Disneyland, every park within 20 miles, play dates in other peoples homes and here we still stand. (visits do and always will exclude restaurant playlands and riding in the carts at grocery stores that have a car on the front end) I don't follow her around anymore spraying everything before she touches it, (well sometimes I do when I didn't forget the bottle in my trunk) though I want to in my heart every single step she takes. Germs to me are like the monster under the bed, boogy man in the closet, the creepy guy in the van with no windows. Actually, we own a bright neon green work van with no windows- but at least it's a tender, sweet, cute, young Latino boy named Tonio driving it. Next time we will invest in windows.
I still wish I had her in controlled, steralized environment every minute of every day, but know it isn't
I'm so grateful I no longer self-identify as a mother of an ill child though I'll never forget that feeling or my empathy for other moms walking in those shoes. That's all I felt like I was for a few years-- now I am just a mother who has to be careful with her precious, fragile immune-system-girl because of what may be trolling around the next turn.
I'd say we have been very lucky as our liver friend Lydia battled cancer after her transplant, our little Harmonee-major rejection issues for well over a year...many people are not able to hold on to life before an organ becomes available. The woman who received the other half of Ashley's liver died within the first several months post-transplant. I really wanted to meet her one day, put Ashley's liver back together- side by side with lulu. Maybe in Heaven. I know it could have been much harder, much worse or the worst tragedy in my life to lose her, but she is here and I am extremely grateful.
Our magic, SECRET recipe that I plan to sell for a lot of money, become mega rich and make some major headway on the worlds orphan crisis (146 million and counting fyi) is this:
16 cups of dumb luck mixed with-
2 1/2 cups of crazy, neurotic Mom & Dad
4 cups of Clorox bleach
dash of pink glitter
5 cups Organic Almond Milk
Daily princess vitamins
a smidge of Barbie hair blended with a Crayola crayon
Mix all together, Bake at 450, for 48 minutes
Cool, serve over ice cream while you pray with your fingers, eyes and toes crossed that the health Gods will forever be in your favor.