Soon we will leave for Cleveland. Seven days scheduled away, for the girls and I . We enjoy the comforts of home and I will miss the peaceful chaos of our being together. My husband can’t go with us this time, and that’s okay. We will miss him , and Max ( more pics to come) , but we are looking forward to staying at my father’s house. He has four boys- the girls love being silly with them, and generally just hanging out, playing barefoot in the grass . Rare time spent together to be savored.

There will be high points of the trip- no doubt. Quiet moments with my father, still a new friend in my life, a lunch with an old contact who helped me search for him long ago…( more on this later..).Great conversations with his wife, whom I admire and am happy to call my friend.  There may be challenges too… two EKG’s, two metabolic work ups, one EEG, two kidney doctor checkups complete with finger pricks, two brain MRI”s with MRS, complete with anesthesia , lots of labs– and the question and answers with our expert doc. Three days of driving into the clinic ,and always unexpected developments . Yet still, we are blessed to have this place to go, to have the support, the knowledge and expertise, even if it’s a plane ride away.