Tuesday, October 14, 2008
"I know not what the future holds, but know who holds the future." anonymous
Has it seriously only been a week since this latest semi-crisis began? How is it possible that a mere seven days can seem like a lifetime? So many of my days, weeks and years are measured in speed. Be it lightning fast or painlessly slow. The desire to catch a glimpse of the future or return to the past often overpowers the gift of just being present in today. Today was a prime example of all of the above. As we headed to the hospital this morning for Zoey's blood redraw, I yearned to gaze into that crystal ball and know for certain that everything would be alright. I yearned to return to a time when life didn't seem so ..... heavy. Either one of those departures from the here and now would most certainly rob me of the magical moments of today. And interspersed throughout the craziness of today, there were magical, irreplaceable moments. Moments, mostly simple ones,that would have been missed had I had a choice and actually chosen, to fast forward past these difficult days or return to days gone by. These moments have and will continue to mold and shape us all, in ways we have yet to even comprehend.Even the inexplicably sad moments will be imprinted on our hearts and transform us .Today as I watched my little love cry and scream, as she was poked and prodded once again, I wished to take it all from her and told her just so, on many occasions. Today as I paced the house waiting for results, I so wanted to wish this day away. But if I have learned one thing on this journey the last 2 years, it is that through the adversity, emerges the realization that no matter the strides you have made in strength and faith, there is always room for more.And ... you cannot change the course of the moments, no matter how much you will it to be. One would have thought that you had been forced to dig so deep in the strength and faith departments, that the idea that there was room for more growth, seems inconceivable. But ..... I was in fact disappointed in myself, that I wavered in both areas today. Unable to let go and know once again, I am not in control.Realizing, that nothing can prepare you for that, which you are unprepared to hear. At one point, as the test results were taking two hours longer then they were suppose to, I was literally searching the house for Xanax left over from when Zoey was first born. Something to take the edge off and calm my nerves. I felt sick to my stomach. I was snapping at everyone and I was NOT thinking logically. Seeing I was teetering on just this side of sanity, Mark called the lab directly.They had just faxed the results to our doctors office but ... the office was closed from 12-2 for lunch. Mark asked the tech for results but she said if she gave him the results, she could lose her job. Hard to believe you can't have access to your own child's results when you want them. You often are left feeling like a second and third wheel in the care of a child you have seen through one medical crisis after another and still, you become an observer and a side line participant. Instead she and Mark played the guessing game. No joke. Mark gave her the numbers from the last time and she would say higher or lower. I am not kidding. This is how we came upon the initial VERY unofficial results and momentarily restored my piece of mind. The day was way too detailed and way too busy and it is way too late to try and retell the entire chain of events so I'll get to the meat of it. We went to Zoey's doctors in the afternoon and went over all areas of concern over the last week that he had been gone. First the blood work: White count went up to a normal range and platelets went up but still below normal. She is heading in the right direction though. She had some immature cells present but they were not the type, blasts to be exact, to indicate a Leukemia "trend"or precursor. These, as per the pathologists,perhaps indicating that her bone marrow was rebounding from some type of immune suppression virus.It still could have been a reaction to her vaccines, specifically the MMR. We probably won't ever know. We redid the urine catheter also and are planning to gather more tests to look into her little urinary tract system. Early in her life it was mentioned that she had one smaller than normal kidney and at the time it took a back seat but now is the time to revisit it. Zoey is still so tired. She ended up sleeping 14 hours last night and took a nap today in between all her stuff and was asleep by 7pm. I laid her down in her crib, went and got her jammies and I kid you not, she was asleep in under 2 minutes when I returned. I am once again exhausted. I started to post at like 9:30 and got side tracked and am now just finishing at 12:15 am. We are going to attempt therapy in the morning and try and get her back on track after a lost week. Thank you again for all the calls, emails and check ins. And of course the prayers. What a trooper my little Zoey is. I am so proud of this child. She continues to amaze me with her tolerance, resiliency, determination and strength. One tough girl, my littlest love. Keep the prayers coming. Please.