I’m not on Facebook often, but I was recently informed of update requests on Eme’s page and signed in to look. To be honest, it put a pit in my stomach as it’s never my intention to keep you in the dark. It seems trite to say I’m very busy (aren’t we all?), but it’s true. More than that, though, are the lingering after effects of this journey for me. Call it PTSD perhaps. I know other moms who fought alongside me for the lives of their children – similar yet unique journeys, each with their own challenges, blessings, and outcomes – and we all deal with it in our own ways. For me the memories are mostly too difficult to recall, and I do my best to suppress them. After being thrust into the spotlight for years, I crave peace and anonymity.
I’ve always said this happened to Emerson and to our family for a reason, and I’ve always believed something positive will come from it – not by happenstance, but because I decide to create positive change. I still believe that with all my heart, but I’ve had to let it go for now. The pressure it created was crushing – What will it be? What positive change can I create that fits the enormity of our journey?… it will have to be big, the price we paid is huge. And how on earth am I going to find the time and energy right now to accomplish it? I have faith it will come full circle in time, but for now I’m accepting that perhaps it just happened. No rhyme or reason or greater good, it just happened. Indeed our journey isn’t over yet; I’m still in the dugout fighting. And maybe for now, that’s enough. Maybe for now, caring for Emerson is all I have to do.
That said, I appreciate those who’ve followed alongside us through the years and I acknowledge the incomparable healing power of all your prayers. It’s not my intention to only update when Eme is in the hospital, but that, of course, is when I have time to do so. Our lives are chaotic and constantly changing – it’s all good, but crazy! Never a dull moment in the White household!
Emerson is (knock on wood) doing pretty well. We’ve been extra careful this winter & have all, so far, been spared this season’s nasty flu. And a new central line last fall, along with a new line protocol, has kept her infection free and out of the hospital. We are seeing an increasing decline in her kidney function, however, and weekly labs are concerning for the health of that transplanted organ. The dietician is adjusting Eme’s TPN formula weekly to accommodate for the kidneys’ declining ability to filter essential electrolytes from her bloodstream. There’s no doubt it’s a concerning development. We’re planning a trip back to Omaha soon to meet with nephrology and her transplant team.
Clinically, Eme has slowed down… despite a “healthy” winter, she doesn’t have the energy to do much these days. She’s sleeping more and tiring out quickly; we rarely leave home without her wheelchair anymore.
Educationally, we made the decision to home-school Emerson this year. Adding one more thing to my plate everyday has been a challenge, but we felt it best to control her exposure to germs in the winter months and also to provide her more targeted learning opportunities. As she progressed in grades at school, the classroom material simply became too difficult for her. Eme, as a likely result of 2 cardiac codes, has a very hard time grasping basic educational concepts. At age 11, she’s been working on writing her name, “EME”, for 6+ years with continued inconsistency. At home, we’re working our way through identifying letters of the alphabet and learning their sounds. It’s a tedious process! She’s so wise and savvy in so many ways, but educational concepts are a significant struggle.
Thank you, as always, for your concern and for your prayers… they are felt.
Happy spring to all!