After Red’s diagnosis, one of the biggest life lesson has been to simply, LET IT HAPPEN.
I have to take a back seat and let her progressive disease happen. I have to let her get sicker and I have to let Chronic Kidney Disease (CKD) overtake her body, putting her at profound psycho-emotional and physical risk.
We have to wait for “End-Stage”: the biggest exercise in patience of my life.
This is an incredibly challenging way to parent: being the bystander while profoundly negative experiences happen to your child — this is at odds with parenting as a practice.
So how should parents prepare to let their child’s disease happen? How do parents accept or become peaceful with the idea of their child’s steady health decline? How do parents let all this horror happen?
The World Health Organization has devised a Quality of Life Assessment which presents variables impacting how the lived experience of say, End Stage Renal Disease (ESRD), might alter how you are in the world.
For Red, I must learn to let the following happen:
1. Increased Physical Pain and Discomfort. She has chronic stomach pain from g-tube infections, problems and post surgery sensitivity. ESRD will bring added pain; dialysis, added discomfort; transplantation, a series of acute and chronic pain.
2. Reduced Energy and Playfulness. Red already tires easily and crashes.
3. Disruptions with Sleep and Rest. At 2, she already has chronic leg pain that keeps her up at nights (a symptom of CKD); nightmares, attachment issues; fear of being alone.
4. A Loss of Positive Feelings. Red is full of life, humour, curiosity, social interest and loves being with people. She kisses, hugs, touches and is OPEN to the world. There will come a time when her disease overtakes these positive feelings and fills them with negative ones: fear of death, pain; ostricization; ‘otherness’; being a freak; abnormality; feeling left out, alone; scared).
5. Reduced Self-Esteem and Jeopardized Body Image. Right now she’s proud to be a ‘super-tubie’ and is not self conscious about her tube, scars, lack of eating or other things that make her different from children. My goal is to creative positive self awareness around her tube, her stunning battle scars and her oddities in such a way that builds confidence and self acceptance. No easy feat.
6. Increased Dependence on Medical Technology. Red is dependent on her feeding pump to survive. Eventually, she may need dialysis which will greatly restrict her mobilization and ability to travel and even attend school. It’s like watching the light go out from behind their eyes: immobilization in childhood is a leading cause of depression, suicide, self hatred and asocial behaviour.
7. Increasingly Medicalized Landscape. With an increased dependency on medical technology comes a surplus of intrusive medical equipment that can dominate Red’s environment: her bedroom sports an IV pole, she falls asleep to the glow of a feeding pump; our kitchen is equipped with syringes, feedbags and medications; our change table is stocked with gauze, saline washes, iodine, silver nitrate, disinfecting creams and medical tape.
8. Educative Disruptions. Red will be spending a lot of time in the hospital as inpatient and outpatient. Undoubtedly, her school attrition will be impressive. Learning, concentration and keeping up with her peers academically will be challenging. She’ll feel left out, estranged and forgotten as her peers engage in normalizing developmental activities.
9. Threatened Personal Relationships. With yo-yo’ing in and out of school, Red will likely have less friends, social support and access to peers when she’s needs them most. Kids with serious problems, in an adult environment experience a loss of childhood and nativity. Kids with progressive diseases are conditioned to prepare for ‘the bad’ and thus, have a built-in mechanism for expecting negativity. This can make childhood relationships difficult as most children don’t have to deal with such sophisticated experiences.
10. Jeopardized Personal Beliefs. Red’s beliefs about life, God, love, hope and faith may be put at risk by her progressive disease. Maintaining a positive outlook in the face of a disease that will result in life altering experiences, set-backs and possibly loss of life, sets a strong ton for life and living — this kind of lived experience in childhood may alter her foundational personal beliefs.
As her Mum, I have to let it happen.
My duties in parenting are changed. Building strength of character is now a matter of survival. For Red, encouraging tenacity is a prerequisite to her future hardships; Instilling grace, gratitude and self acceptance are a must if she is to get through it (quite literally, alive).
If I am to let her disease happen, to bloom so fully that it might caste her in a permanent shadow; then I see no other way than to prepare her for hard living at the ripe old age of 2.