To Heidi, Randi, Derril, & Kyle

The day I thought my digital piano was starting the long, slow process of gasping out it’s last, I sat in an empty chapel and played notes that tried to restrain my tears, but could do nothing to erase the depth of my sorrow.  I am the most mediocre of piano players on my very best of days- I learned from books in my 30’s because it was a dream that never withered with circumstance- but it alights and sustains my spirit in the way very few things can.  By some miracle my aging digital instrument held on for dear life.  But Heidi, one of my fabulous sisters-in-law, heard of my concerns and asked if I wanted her unused acoustic.

Definitely.

And just like that, a plot to get the piano to my home was hatched amongst a handful of individuals from the loving family I married into. To Heidi for her generosity, to Randi and Derril for driving so many hours up through- and camping out in- the snow to bring the instrument to where we live, to Kyle for helping to unload this precious gift and taking away my old digital:  THANK YOU. My heart is humbled and infinitely grateful.  I can never repay what each of you did, and you may not have fully understood the significance of these gifts to me back in January, but it returned a key to part of my joy that was locked away- caged.  Thank you.

Some Reading to Consider

Living Like Livvy, by Andre Govier

In this book, Mr. Govier presents one family’s journey of love taken from interviews with Livvy’s mom (Sara) and writes it as a first-person narrative from her perspective.  The early months of Livvy’s life progressed much as any typically developing child’s would.  At 21 months, however, the first signs and symptoms of Rett Syndrome began to manifest itself, and this book briefly details Livvy’s short life, the struggle for an accurate diagnosis, and some of the unique and heartbreaking challenges that occur for individuals with this rare condition.  This book is a short read, and I think it presents a very balanced picture between the sorrows and the joys of loving and raising a child with significant neurological impairments.  

In recommending this book, I have to acknowledge a deep appreciation that its proceeds directly benefit a charity that is funding research for a Rett Syndrome cure.  Though this incredibly debilitating condition has not touched the lives of anyone I personally know, I believe there is great value in learning about and support others in the difficult journeys they may be called to walk.

A Note of Appreciation to Hannah

My dear friends, loved ones, and those of you who check in and read up about our own family’s journey from time to time:  Hannah has reached a point in her life where she would like to pursue some of her own passions and create content of a very different nature in some other corner of the internet.  In talking to me this past week, she indicated she would like to take an extended leave of absence from writing for our blog for now so she can focus her spare time on doing this- with my blessing.  She says she will let me know next time she feels like writing something she would like to share here.

I love and support her.  When I chose to start writing about our family’s experiences, I had not anticipated her wanting to be a regular contributor. I am profoundly grateful for the insights she has shared, and for all of the ways she encourages me to think deeper about why I do things and to improve myself in the process.  Hannah and I are very different thinkers- sometimes it’s like watching an episode of the Odd Couple when we are having a discussion- but I value her perspective and compassion.

As always, my commitment remains to only write about her contributions in our family that she feels comfortable publicly sharing.  She also gets to veto the use of any pictures of her she doesn’t like.  When you look inside this window at our family’s journey, please know there is a vast and unseen part of my world that is equally invested in all things Hannah.  She is, and always will be, as treasured and cherished as Tony is.