No human being ever gets totally used to a constant state of being ill whether it be a constant state of discomfort or a low level of energy nor does a parent get used to seeing their child feeling ill. A range of emotions ebb and flow for both the child and parent just as the days come and go. Some days are easier to deal with while others are just plain frustrating and painful.
I have watched my chronically ill son experience so many emotions through the years; sometimes accepting his current state of being and other times fighting like hell in disbelief that his body could and would betray him in such a manner.
So as a parent, you may ask yourself, how does my child get to some level of acceptance with his/her condition, so that they can just focus on making the best of what quality of life they do have?
Up to this time, there have been so many layers of acceptance my son has experienced.
I want to explain my personal definition of "acceptance" for my son.
First, I will start with what “acceptance” does not mean:
Acceptance does not mean giving up or giving in to being chronically ill.
Acceptance does not mean losing hope that things will change and get better.
Acceptance does not mean liking where you are.
Acceptance does not mean choosing to be or stay where you are.
Acceptance does not mean no longer needing to explore treatment options.
Acceptance does not mean losing your dream of living a fulfilling life.
I have come to cherish where he has landed most recently; a new level of acceptance for his state of health. His physical body hasn’t necessarily improved, but his state of mind certainly has!... and what a difference that makes for him, myself and the entire family.
The road to getting here has been arduous, long and difficult. Accepting means freeing up some of the negative energy that comes along with being ill.
Lately, I hear a change in my son’s choice of words when he speaks to me. I see a new level of peace in his eyes and facial expression. Some of his thoughts and words sound like:
We know a lot. Maybe it’s not everything, but it’s enough for today. We are not in a race anymore to find a solution and I’m accepting that.
This is “the life” I was dealt and I’m accepting that. I can spend less time on experiencing anger. It means letting go of some of the anger.
Being chronically ill is not changing any time soon and I’m accepting that. I can stop spending so much time on wishing things were different.
I am no longer in a rush to try new medications, especially since I have experienced so many side effects that come with them.
I honestly cannot tell you how my son has gotten to this place of self-acceptance. However, I have always been extremely transparent with him on his medical issues and options, keeping things open and honest. Additionally, I have always let him have a “voice” in our decision making and encouraged him to express his feelings.
As a result, while we haven’t always seen eye to eye, this approach has kept us moving forward. And I’m positive that it’s led to his current state of self-acceptance.
Sadly, he still experiences extremely rough days and questions his life. However, in this new state of acceptance more time is spent on, “How do I make the most of each day?”
And that means he’s now Brewing More Hope… just like me! #smiles
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.