I like to put a positive spin on things….look at the bright side….make lemonade out of lemons. However, there are some days when parenting a child with special needs is really tough. Slow progress can be discouraging. The inability to fully communicate with a child can be frustrating and feel lonely. And, although I try to avoid it like the plague, I can’t help but compare my child to all those typically developing children running around in the world. There are days and moments where I feel fantastic and I see all of Taylor’s wonderful, God-given gifts and attributes and days when I feel like I can take on any challenge presented to our family, but every now and again, I get hit with a wave of sadness or anger. Sometimes I know what triggers it, and other times, it seems to hit me out of nowhere.
Taylor is a beautiful and lovable little girl and I have come to a place of overall acceptance with her diagnosis; however, there are still moments where grief overtakes me. Frustration sets in as I wait for her to reach her next milestone…..sadness hits while attending the wedding of a friend because my mind wanders to the fact that Taylor will likely never marry…..when I hear my nephew tell me, “I love you, Aunt Mander,” it pulls at my heartstrings because I am not sure if I will ever hear the words, “I love you,” from my own daughter. Other times, it is not a specific event or moment, but my own thoughts that trigger these feelings. On a beautiful day, my mind can wander to a place of fear….fear about Taylor’s health, fear about whether I am doing enough to support her, fear about what our life will look like in a few more years, and fear about what happens to Taylor if my husband and I pass away.
One might ask, “how can you grieve? You have not lost your daughter.” It is true that the type of grief we experience as caregivers is not always typical grief because not all of us have experienced a tangible loss. However, we begin creating dreams and expectations for our family and our children long before we ever see that positive pregnancy test. Having a child with a disability or complex medical needs completely shatters any ideas of what parenthood and our future lives will look like. Our children are here with us….but not in the way we had imagined. This is a loss. The loss of a life imagined. The loss of an independent life. The loss of a ‘normal’ or ‘perfect’ child.
I recently presented at the 3rd Annual PURA Syndrome Global Conference about this topic and there is a term for the type of grief we experience. It is called ‘chronic sorrow,’ first described in 1962 by a researcher named Simon Olshansky, who provided therapy for and conducted research on caregivers of children with significant physical and cognitive disabilities. Chronic sorrow describes the “waves of grief observed in parents of children with mental deficiencies as they struggle to cope with the loss of a ‘perfect child,’" and the term helps described these periodic, recurring grief-related feelings, such as sadness, fear, helplessness, anger, and frustration. It is estimated that somewhere between 50%-90% of all caregivers will experience chronic sorrow at some point in their lives, so it is extremely common. It’s important to note that experiencing chronic sorrow does not inhibit a person from experiencing a sense of meaning and purpose in life, and most people who experience chronic sorrow, still experience a sense of happiness, contentment, and satisfaction with life.
There are three main “triggers” to chronic sorrow: 1) Initial diagnosis and major health related events, 2) A recognized negative disparity between the past and the present, and 3) The occurrence of events that bring the disparity or sense of loss into focus. To give you a better idea of what chronic sorrow looks like on a daily basis, my PURA Syndrome family was gracious enough to both discuss and provide examples of how they have experienced grief and chronic sorrow as caregivers:
Triggers to Chronic Sorrow
1. Initial diagnosis and major health related events
Many parents experience a wave of grief before and after initial diagnosis. No parent envisions their child having significant impairment of any kind and significant medical conditions or developmental delays can annihilate the vision you had for your future. Potentially, a diagnosis could also bring relief from the unknown, as it did for us when we discovered Taylor had PURA Syndrome. Parents who have children with undiagnosed conditions can sometimes experience prolonged grief prior to receiving a diagnosis, as the uncertainties regarding the future can be overwhelming. Major health related events are stressful for any typical family, but even more so with a medically fragile child. Hospital stays, arranging care for a chronic illness or condition, and fears of the unknown can be emotionally draining.
“My biggest sadness or feeling of grief first came from wondering if I did anything to cause this. I couldn’t wrap my mind around the fact that it was just a random fluke. I wondered if drinking Diet Coke while I was pregnant did it, etc. I still question things to this day.”
At one point when my daughter was still in the NICU, I remember sitting on the couch at home and bursting into tears. The only thing that kept going through my mind in that moment was that she should be home with us and not still in the hospital. There was nothing I could do about it and I felt so scared and helpless because we had no idea what was "wrong" with her and why she was born the way she was.”
“I get triggered by regression of the unknown. My son was able to walk and balance just two years ago.”
“It kills me, it weighs me down a lot and I curse our luck, but what hurts me the most is thinking that she can suffer, sometimes I wake up crying in the middle of the night, just the fact that she suffers, destroys me ... We love her very much, I kiss her, and I hug her all day and she to me.”
“When my son was diagnosed with PURA, I went on Facebook to find out more to be told that he was the oldest one that they have found to date and then we lost him 7 months later, the upset when the PURA family were asking when he died….was this the cut-off point? To watch him dying and the pain that he was in and not be able to stop it. I find it so hard to be without my boy every minute of the day and although we are PURA family, l feel we don’t fit cause he is not here. We never had much, we lost a lot, but for me, losing my son was the biggest loss of all….he was so loved and such a big part of our lives.”
2. A recognized negative disparity between the past and the present
From the moment you find out you are pregnant, you are likely filled with hope and wonder about what life will be like with that child. Your mind fills with hope and dreams for the future and you quickly envision that child hugging you, saying, “I love you mama,” playing sports, completing school work, smiling, laughing, and engaging with friends and family. Chronic sorrow creeps in when you recognize the present is vastly different from what you thought it would be.
“When I look back at videos of my older son when I was pregnant it breaks my heart. He was so overjoyed to know he was going to have a little brother, it was like I was giving him the best gift in the world. Now knowing that they will never be able to play basketball in the driveway or play-wrestle or just do normal brother activities just tears me up. It's not fair.”
“When we made the decision to adopt again my oldest daughter was so excited to have a sister to play with and to be her forever friend. I know she loves her sister and at the same time wishes for what she longed and planned for.”
“My sister and I were pregnant at the same time. From the day he was born I’ve been feeling such a mixture of feelings. It’s overwhelming to have a nephew a few months younger than your daughter and watching him getting older and milestones away from my own baby. All his giggles, playing and babbling fills me with happiness because it is the best sound in the world and then I’m overwhelmed with sadness because my daughter doesn’t do any of the things he does. We got pregnant together, so they could be best friends and they could have a childhood of playing together and looking after each other and the realization that this won’t happen breaks me. My sister is my only support and for some reason I have times where I need a break from her own little boy. And this makes me feel ashamed and so sad but at the same time I feel the need to be away from the perfectness of my nephew. It’s embarrassing, and I feel so bad for having these feelings, but I just don’t know how to overcome this.”
3. The occurrence of events that bring the disparity or sense of loss into focus
Milestone occasions are particularly difficult for caregivers of children with special needs. When Taylor was close to turning one year old, I had a incredibly difficult time. We did not have a diagnosis at that time but there was a realization within me that my daughter had significant delays. Although I forced myself to go to playdates and maintain contact with my support system, I also didn’t want to. Every interaction was a reminder of how 'different' Taylor was from her peers. I could see the progress Taylor’s friends were making and I couldn’t help but compare. Around one year, children learn to walk and talk - huge developmental milestones that Taylor was not even close to achieving and it broke my heart. Events that trigger chronic sorrow could be representative of big life events like the first day of school or a graduation, marriage, or pregnancy announcement, one’s internal thoughts, or it could be found in small, day-to-day interactions with your child, friends, doctors, or even at the store….
“When I can't figure out what she needs/wants. I have to walk away and feel so guilty for needing to be away from her to maintain my sanity.”
“The fighting to get equipment, the fighting to be heard, the fighting to give him a quality of life….”
“Every time I have to explain my daughter and her behaviors to brutally honest kids my heart breaks a little.”
“When people go on about “what an amazing mother I am,” or “I don’t know how you do it.” I don’t know why, maybe because it feels like pity? But this is a huge trigger for me.”
“Knowing that I will never hear his little voice calling for "mommy" or "daddy" is just devastating.”
“Seeing a baby smiling and walking on the box of diapers I tried to buy recently had me in tears running for the door.”
“Cyclical grief always catches me near my daughter’s birthday. I want to spoil my daughter with the special thing that she wants but she still has the same toys as she did years ago and doesn't need anything else. And there is usually nothing that I can buy her that will hold her attention for long. Each year, I go to the store and almost have a panic attack and have to work through it. It is the time of year that reminds me of what she isn't. A lot of the other time I can ignore it and focus on what she is.”
“I am always wondering if I am doing enough to help my son become the best he can be. My son is doing really well but I tend to feel a deep sadness come over me and ask myself why am I feeling this way? And I realize it is because I am trying so hard to do everything I can to make him be the best he can be and I think it drains on me sometimes.”
“I once burst into tears when I went to a toy store and saw the dolly pushchairs and thought my daughter will never play with them...”
“My biggest fear is the life my PURA child will live after my wife and I have passed. This is a chronic fear and it chokes the life from me often.”
I noticed that many parents expressed embarrassment, shame, and guilt about these feelings of grief, which are sometimes experienced years after initial diagnosis. I think there is a bit of an expectation that caregivers adapt to their circumstances and not experience, let alone express, these waves of sadness, despite the fact that chronic sorrow is such a common occurrence among caregivers. Caring for a child with a disability is incredibly challenging work, and if any of this post resonates with you, know that you are not alone in this journey. We love and value our children, but it is also normal and appropriate to grieve for the life we had once imagined.