The Path No Parent Wants to Take By Mary Aggarwal, Founder and CEO of Circle 4 Parents
This is the first part of a two part series that covers the absolute hardest times in parenthood: the fears and emotions when dealing with a permanently disabled or terminally ill child, and the second part will be on being a parent of a child who has passed on.
Based on my own experiences as a parent, there is no other harrowing decision as a parent than that having to be made in the context of the care and treatment of a seriously ill child. The pain and fear going on in a parent’s mind – and the rollercoaster of emotions, are just filled with angst and confusion:
“Why did this happen to my child??” “What have I done to deserve this?” “I would rather take their disease than them.”
While all will agree that a child’s best interest is always the first thing to consider, and prolonging the child’s life as much as possible is the ultimate goal, unless there are clear indications that the life to be experienced would be an intolerable burden on the child.
However, believe it or not, how those interests are to be played out and by whom, is a much more difficult question, especially given the difficulties in measuring pain and suffering experienced by a child who may not be able to communicate, unsure how a child’s condition might develop, and the irreconcilable disagreement between doctors and families regarding opinions about the quality or tolerability of the life the child might have in the future, if treatments are to be initiated or continued. Parents have to be the first and foremost decision makers in these sensitive times. They have both legal and moral responsibility to make healthcare decisions for their children and on their young children’s behalf unless their child is emancipated. Ethically, these decisions should be made by the child, their legal guardians and/or parents and the healthcare team jointly together.
But these decisions are not easy and do not come without an emotional and mental taxation. Even the fact of knowing that your child may not survive the illness or disease, parents need support and help. It can start with having a good relationship and understanding with your health care team. Both your doctors and the healthcare team need to have cooperation with the family in understanding their wishes and needs.
These decisions are so personal that sometimes, parents’ own personal beliefs may interfere with the best possible decision for their child. Parents may have strong religious beliefs and think that a miracle or divine intervention will save their child. In these cases, parent may insist that their child continue treatment even if there is no hope of survival.
Some things to remember as a parent living with a terminally or chronically ill child:
Be involved and live in the moment with your family and child capturing moments.
You can let loose a little with rules: let your child wear their superman costume to school or dye their hair red. Let some things go.
Doctors and their team do not know everything. We may put a lot of faith in the medical community, and rightly so with their knowledge and experience, but do not be afraid to do some of your own research and know that you are the best advocate for your child.
Do not be afraid to ask for help, as raising a sick child is a full time job.
If you find out that your child is going to die, it may be hard to really grasp what is actually going on, even though we think we understand what that means. Death is real and it is final. It’s important to find ways for your family to talk about it.
You are stronger than you know- whatever obstacles you or your child face, do not let anyone push you around. You have had to make some tough decisions for your family, and you tapped into unknown resources of strength and courage.
Understand that you will have regrets. No matter how hard you try for your child, the treatments and drugs, you will always second guess yourself and your decisions. Try to limit these regrets and be confident in the decisions you do make. You have always only done the best for your child that you can.
Know that everyone will have an opinion, and that is okay. Learn to ignore anything that isn’t helpful, even from well meaning friends and family.
Accept your feelings of jealousy of others, watching other families with healthy children, but try to move past it or learn to live with it.
At Circle 4 Parents, we offer several different sessions for parents dealing with very difficult times: Coping with Stress, and Raising a Resilient Family are a few examples. We also offer one-on-one private coaching sessions to help families with the privacy and support they need.
On behalf of all of us here at Circle 4 Parents, we want to be there for you in times of need and we want you to understand that you are not alone.