“We have the MRI results. There is an area of damage in her brain. It looks like she will have cerebral palsy.” I still get teary just writing this nearly eleven years down the track. The recollection of her diagnosis is a painful and lonely memory. A young, neonatal nurse came into the small room with me to face the senior doctor so I wasn’t alone…but I was. I cried with shock and complete lack of understanding…and fear. She cried too. It helped. Anything else may have seemed trite. I don’t revisit that moment as much now but bad days or illness or big events still bring back similar feelings of loss, sadness and grief. “Progressive, periodic, pervasive and permenant” sadness.(1) That is chronic sorrow.
Living grief is an odd concept…after all, my child is alive. She is here. It does not lessen my love for my her. Nor does it mean I would change her (for my own sake anyway…I would take away her pain if I possibly could). She is exactly who she is supposed to be and has taught me and many others lessons which humble me and make me grateful…for her and for life. But my grief is still there. I live life running alongside it. Sometimes it jumps in my path.
Only recently I came across the concept of Chronic Sorrow. I did some reading. It fits like the proverbial glove. Yet I am a little reluctant to oversell it for I am painfully aware that, compared with the ultimate loss some of our friends feel every day, I am so lucky. But there have been a few difficult days lately. Hard in my head…which makes everything a challenge.
There was the day I picked her up from school at lunch time…usual for a Thursday. It had been a positive day for me but the teacher said she had been sad before going outside for some fresh air. I noticed the odor first then felt her wet clothes. Accidents happen to all kids, even continent ones, but I cried and cried. Missy smiled at me but it was heart breaking to see that my non-verbal princess had been unable to say she needed help.
Then came a Sunday morning. Time for a sleep in right? Well not really. A tube fed child who is on 9 morning medications needs to stick to a routine. But last Sunday I didn’t want to do it…I really didn’t. I lay in bed weeping at the thought that I had to get up and do the same old thing…then more tears of guilt for not wanting to. Crying in need of a break…and more crying with the realisation that soon she would head to respite and I would get one…but I have so much trouble leaving her. No winning there.
To top off the week one of Missy’s carers had to cancel a shift due to a family emergency. My first thoughts were of how I would have to rearrange my morning so I could stay home in the afternoon enabling Missy to still have a sleep. While washing the dishes it hit me. She wouldn’t be able to have the planned shower. I howled. I’m talking ugly crying with a capital U. It is such a “normal” expectation (in our lucky land anyway) to be able to cleanse oneself. To not be able to help my child with something so usually simple crushed me.
Then there was today. A trip to our Children’s Hospital Emergency Department. No rushing with lights and sirens (grateful) but still a worrying, tiring day. Another blood test…another threat of admission…another reminder that she has more of this hospital stuff than most. She was patient and brave and we are home…but now I sit pondering the “what ifs”…again.
These are all examples of the challenges of parenthood…and more particularly the challenge of parenting a child with additional needs. But this time a week of hiccoughs hit me hard. Harder than usual. As described in “Living with Chronic Sorrow” triggers can be comparing usual milestones, a health crisis and simply the constant caregiving itself. Any and all of these can bring about a recurrence in the intense feelings of sadness, anger, frustration and, the parents’ special friend, guilt. And so they did. All of the above. The funny thing is, reading about this as a condition first described in 1962 helped. Others deal with this too. I’m not going crazy (well maybe just a little!). This kid is a gift of smiles and lessons so I will keep on running with the sorrow…she’s worth it.
(1) Eakes et al., 1998
For further information http://www.chronicsorrow.org