I’ve been thinking a lot about the notion of HOME. Or rather, many signs have been pointing me to think about it. Certainly, the gift of having my older college-age children home for the holidays has reminded me of how home as a nest is really only its proper self when my children are in it. Then during the holiday, we went to a powerful art exhibit called “When Home Won’t Let You Stay” which explores involuntary migration and its impact on refugees through contemporary art. The most provocative piece for me was a sculpture composed of a teen’s belongings all packed up by the artist into one form – including clothes, sports equipment fitting within the frame of the bed – following his deportation. Then my favorite online yoga instructor’s annual 30-day sequence for the new year is called HOME. And finally, last week my husband Charlie and I had the heart-breaking pleasure of hosting a young couple and their newly diagnosed baby in our home for a late afternoon meeting in front of the fire, quietly getting to know each other and talking gently about the road ahead for them with their daughter. The next day, the couple emailed to say that, inspired by the fireside conversation, they had gone out and bought a fire grate and screen so that they too could have a cozy fire in their new home. I imagine they felt that building a warm and cozy atmosphere at home is an antidote to the cold dread and anxiety that pervades the body and mind in the face of an untreatable and fatal condition.
So, what is HOME? On one hand, if we are fortunate enough to not be homeless, we take it for granted. It is where we live. Our base of operations. On the other hand, it is something we are constantly working on, curating, honing. Frederick Buechner writes that home is where “we have shelter [and] we are surrounded by the reassurance of the familiar.” But I remember experiencing my daughter’s Tay-Sachs diagnosis as an evil stranger invading my safe space and threatening my familiar. Buechner also writes that “to be really at home is to be really at peace.” * How can parents build a peaceful shelter both literally and figuratively against the storm that is illness, hospitalizations, medicines, emergencies anticipated loss and grief?
Our daughter’s disease trajectory was predictable and her symptoms were manageable, which allowed us to set and ultimately achieve, with her pediatrician, the goal of keeping her at home throughout her entire life. We continue to be very attached to our home that has witnessed her life and death and has held us safely in the years that have followed.
I know that for other families, long hospitalizations for their child are part of the package and the hospital becomes a familiar second home that is a source of care and a place of safety. Or for others, the physical and psychic space between their personal home and the hospital is one they must travel often and with mixed feelings.
And for some, the best home for their child is one that is no longer under their own roof but a residential place with 24/7 care from others.
Parents want nothing more than to provide a safe and loving home for their child and for their family. What it means and requires to feel sheltered, reassured, and at peace will be particular for each family. At this beginning of the new year and decade, my wish for you and everyone in the Network is that you feel strong and confident to move into the space that awaits and that you and your child feel “at home” where you are.
* From Wishful thinking: A Seeker’s ABC by Frederick Buechner.