September 10, 2013
Yesterday we received “the call” I’d been hoping for and dreading all at the same time. After 2 ½ years we have answers. A diagnosis. It’s so strange to say that. I’m scared to write it. Zachary has Lowe’s Syndrome. Say what? I cried lots of silent tears on the phone yesterday as I listened to the Genetics Counselor and asked questions, learning what’s next. I let the tears flow as I headed later to Kohls with a couple of the kids, but now I don’t know how I should feel. Am I supposed to be happy I have answers? Am I supposed to be scared about what’s ahead? My bloodshot eyes feel swollen from yesterday’s tears, but for now I feel done crying. In reality nothing for today has changed other than a label. Zachary is still the same sweet boy I woke up to yesterday. We’ll cheer him on and help him learn new skills just like we always have. I’m sure this emotional ride will take many forms but I wake up this morning grateful. Grateful for the reminder of what a special gift Zachary is. A surprise pregnancy turned into a special journey with a joyful, quiet, fun, determined little boy who gets to live his life with extra attention and love from family, friends, and doctors.
A diagnosis brings concerns to the forefront. We now know what doctors need to be seen next. We know there is a fear of kidney failure and his brain development will be watched closely. But this is why we wanted answers in the first place, so we can be prepared and know what to expect. Further testing will be done to determine if this X chromosome make up was inherited or brand new. This can be critical information for other family members down the road.
Today I thank God because he has walked with us for the past 2 ½ years and he’s not going anywhere. He answered our prayers for a diagnosis. As I told a few family members and just a couple of friends yesterday when we got the news I felt an amazing sense of peace wash over me. God’s got this! I was suddenly “okay.” So thank you for your prayers. I can truly attest that they are upholding us right now.