For 28 years of our 41 years of marriage, my wife, Joann, and I had the honor of being caregivers to our youngest son Johnny. He was born with multiple unique malformations, and needed quite a bit of special care from his Mom and me, well mostly his Mom. We were also blessed with our two older sons that helped care for their little brother and also helped Johnny develop a keen sense of humor and treated him like any other little brother would be treated. Through the years together our family was different, yet as normal as most families. The older two boys grew, went off to college, got married and are now raising families of their own.
For most of the last 13 years or so of Johnny’s life, it was, Me, Mom and Johnny everywhere we went. Whether it was church, the store or a restaurant, it was always the three of us. We always drew a lot of attention, pushing Johnny in his chair, his appearance (he always dressed in an attention getting outfit) and signing to each other to communicate. You always knew when the Ashleys showed up.
Much of Joann and my identity was wrapped up in being caregivers for Johnny. The Deaf community even called me and Joann, “John’s Mom and Dad” for years, we still have that identity by many. This is true for most caregivers, while, they are busy managing the needs of those they love, others will identify them with the person they care for. The time and attention it takes to be a caregiver can be consuming. We become what we do, as opposed to who we are. There were even times that people introduce us as having, “A disabled child.” It is a labor of love, so we gladly do what needs to be done, and wear the title of caregiver as a badge of honor. Whether it be for an aging parent, or a spouse or (like us) a child with special needs, we freely lose our identity, to be attached to the care of our loved one.
About two years ago, when our son suddenly graduated to heaven, the grief was overwhelming. The sense of loss was more painful than anything I have experienced in my life. This is to be expected when someone loses a child. It is not the natural way things are supposed to happen, we are supposed to outlive our children. The one thing that was not expected however, was the loss of much of our identity. So many people had associated us with our son, and now we a just a couple and not a trio. We walk into a restaurant totally unnoticed, some people don’t recognize us at first because Johnny isn’t with us. Relationships we have had for years with medical professionals abruptly came to an end. The “New Normal” isn’t normal for us.
When caregiving comes to an end, there are so many adjustments that you have to make that you have never considered before. Not having the same identity is part of this new life that you are not prepared for. There are many emotions including guilt that you must deal with. Suddenly you have time to do things you could never do before. You feel guilty for enjoying an afternoon. I remember feeling guilty because I didn’t need to take Johnny to dialysis for the first few weeks after his death. No doctor appointments, no breakfasts to make… there is a new found freedom that you didn’t want, but now you have. People your age take the empty nest for granted, yet yours comes with great pain, and yes, a feeling of guilt.
The “New Normal” is a phrase that I personally don’t care for, because, there is nothing normal about the life you now have. Of course being a caregiver isn’t “normal” to most people. Life comes in stages, Ecclesiastes 3:1-8 To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace. Each stage of life has it’s own set of challenges.
As we navigate this time in our life we are mourning a little less than last year. We still however, have to deal with the feelings that are associated with this “New Normal.” Like all of us that have been caregivers, losing our own identity to the ones we care for is alright.
I have been identified in many different ways in my lifetime. Some good and some I would like to forget. However, my favorite way that people have identified me is as “Johnny’s Dad,” and there is no identity crisis there.