No big surprise, but I am constantly struggling to find balance in my life. As a caregiver who is navigating the rare disease world and ALL that entails, it is hard to find much time for myself (or to cook dinner for that matter).
I spend my days trying to keep Katherine’s little hands and feet as busy as possible, which is challenging for a child who cannot walk, lacks balance, and struggles with speech and fine motor skills. Needless to say, I haven’t had much spare time to post lately, so I want to share some pictures of our fall here in Kentucky. As you will see from the photographs, Katherine is happy and loving our daily projects and adventures.
Also, our friend David Wheeler wrote a wonderful article about our family for The Motherlode blog in The New York Times – “When the Diagnosis is Rare, Parents May Know More Than Professionals.” I encourage each of you to read it and share. Thank you David for writing this important story. We hope it will empower others in the rare disease community.